Our Cora Bean

World Down Syndrome Day

2012-03-20T16:50:00.000-07:00

March 21st is World Down Syndrome Day. A date chosen to honor, celebrate and raise awareness for individuals with Trisomy 21.

Last year was the first time I had ever given World Down Syndrome Day a thought. 1 year ago I wrote Cora's birth story, just 9 weeks after I’d ever had much cause to think about Down syndrome at all. 9 weeks after her arrival into my life changed everything. 9 weeks after I had discovered something that I now feel was always destined to be a part of my life. Something that seemed to fill in the gaps in my life and give me purpose that I realized I had been seeking.

Sometimes I wonder how it is that I was so unaware in the past. How is it that I had never known someone with Ds, that I don’t remember knowing any children with Ds growing up, that I barely remember even seeing anyone with Ds? I had to have. I knew what Ds was on the most general level, but I had never really thought much about it.

And now, of course, it is everywhere. Yes, I do seek it out. I love to be involved with our local group, the Northwest Down Syndrome Association. I love to read the blogs of other parents with children with Ds. I love to get together with the handful of local friends we’ve made, linked by our love for someone with an extra 21^st chromosome. Yes, now I see Down syndrome. It made my day last week when Cora and I ran into a beautiful little 6 year old girl and her mama. I looked at her daughter and smiled. Perhaps her mother wondered why until she looked at Cora and I saw that little spark of recognition. We both smiled and talked about swimming before they scampered off to the pool while Cora and I got dressed.

Now I get caught up in stories about Ds in the news, thoughts about education and inclusion, and worries about what the new prenatal testing will do to our communities and to our society. I am both heartbroken and encouraged by the stories of abandoned children in other countries seeking homes with new forever families.

It may seem odd to suddenly find myself a part of a family that I had never acknowledged or recognized before. A family consisting of so many backgrounds, faiths, beliefs and stories. A family that most of us didn’t know we were looking for.

I think that the thing that I am learning since Cora entered my life is how important people with Ds are in the world. Because it really does seem that there is something bewitching about so many people with 3 copies of the 21^st chromosome. I know how offensive platitudes about “special” people can be, yet underneath the annoyance I find myself wondering what it is about that extra chromosome that adds something indescribably compelling. My own exploration of this is admittedly limited, since my daughter is only 14 months old. But she has something that undoubtedly draws people in, that makes them smile, and that captures hearts.

As my wise sister Mira has told me, she thinks that that enigmatic quality is really Cora’s survival mechanism and her gift to the world; that her charisma contains something that other typical kids don’t really have. Perhaps it’s something impossible to put a finger on, yet equally impossible not to recognize. These are sentiments that I’ve heard echoed many times over by others as they describe their loved ones with Ds. That there is just something more, something mysterious that enriches lives, compels deeper love, teaches a truer understanding of what is important in life, brings one closer to their true self.

What is this quality? As a relative newbie I’m not really qualified to answer that. But I am certainly excited to watch it unravel in my own life, as I witness Cora maneuver her way through milestones big and small, drawing others in as she goes, leading my own heart on a string. And I am blessed to be surrounded by so much inspiration and so much joy in this community we’re lucky enough to share.

Join the blog hop for 3/21 by visiting With A Little Moxie or My Stubborn Little Miss to check out other great posts today.

Flashback- The Unbearable Cuteness of Bean

2012-03-18T11:39:00.000-07:00

I've been out of touch the last few days, up visiting family. We've been relaxing, cooking and laughing, and forgetting to take pictures or open a computer.

But I've been thinking about this video. This sweet little 4 month old Cora Bean. Oh so tiny and sweet, with her bobbing little head and soft little cheeks. Looking at old baby videos recently has been tickling my fancy.

So I thought you might like another peek too. My little Sweetie Bean!

Raining Cats and Dogs

2012-03-12T16:37:00.000-07:00

Today it is rainy and it is cold. I keep seeing other blogs that show families frolicking in the sun, playing in the grass, even out in swimsuits.

Not us. We are stuck inside. What's more, I don't have a car today, so a trip to the library story time and even the grocery store is out.

So I thought I'd give Cora the chance to make a mess and create a masterpiece.

Perhaps I'm biased, but I think she's quite the artiste.

Plus she looks great in blue.

And red.

Why, just look at the fruits of her labor!

See, she's proud!

But an easy clean-up it was not. I approached her with a baby wipe or two and quickly realized that was laughable. So I had to grab her from behind and plop her in the tub. You may wonder why her bathtub is a catering bus tub. Well, let's just say it comes in pretty handy with a child who seems to like to go #2 only in the bathtub. Ahem. Makes for easier clean-up. And it gives her practice sitting up in the water. Fancy baby gear from Cash and Carry.

Luckily Cora is quite washable.

But Melissa and Doug's washable finger paints did NOT remove well from the high chair tray.

Guess I'll keep scrubbing.

No She is NOT "Downs"

2012-03-11T10:45:00.000-07:00

If you are part of the community of families who love someone with Ds, you've no doubt heard all kinds of misdirected comments about your child, many of them from medical professionals. And very likely, even when your child is healthy there are still many reasons to visit doctors and specialists. Cue the comments about "Down's kids", how "they" all are, and sometimes you even hear some doozies that really hurt.

When Cora was in the hospital we had a nurse that really raised my hackles. Close to jumping up and defending my daughter from what I am sure was just careless phrasing, I decided instead to take the opportunity to try and educate, and just sent off a letter to the pediatric director at the hospital. I have no idea if it will even be read very closely, or if it will make any kind of difference. But I would love to do my part to help raise awareness, a little bit at a time.

Here's a peak at my letter.

Dear Director:

My daughter was recently admitted to your hospital. What began as a routine tonsillectomy and adenoidectomy for a 13 month old ended as a readmission for dehydration, subsequent respiratory distress and a PICU stay for aspiration pneumonia secondary to swelling. It was a very stressful experience, but we are very grateful that our daughter experienced excellent care during this health crisis and is recovering very well.

My intention in writing this letter, however, is to share something with your staff that is very important to me. After my daughter was diagnosed with Down syndrome shortly after birth, I learned of the importance of using people-first language. This means referring to an individual as a person first and their disability or diagnosis second. My daughter would simply be referred to as a “child with Down syndrome” rather than a “Down’s child” or “a Downs.”

One recent experience has stood out for me, although it was not the first or last time a health care professional has used this type of language. Upon readmission, Cora’s nurse commented with surprise, “Oh! She’s Downs.” I could not understand the medical relevance of that remark and it was so hurtful perhaps because there did not seem to be medical relevance. The defensiveness I immediately felt unfortunately lingered throughout our stay. These types of statements are dehumanizing and imply that my daughter is simply the sum of her diagnosis, rather than a valuable and cherished member of our family.

Moreover, the correct terminology is Down syndrome or Ds and is not Down’s. While it may seem like a small detail, using the correct medical terminology is important, especially when used in a medical setting by medical professionals.

In the relatively short period of Cora’s life we have learned much about the stereotypes faced by people with Down syndrome. While we are aware that her diagnosis has had an impact on her health, she is a vibrant and healthy girl. She does not “suffer” from Down syndrome and she certainly does not fulfill all the stereotypes about people with Ds, neither socially nor medically.

Even so, we know that she will likely need additional medical care in the future and we intend for her to continue as a patient at Randall Children's Hospital. Your hospital has cared for her in the NICU, during her successful open heart surgery and during her recent stay. We are grateful for the wonderful care she has received.

But we would love to be able to play a role in making the environment at your hospital just a little more hospitable toward individuals with disabilities and their families. I would be honored if you would allow this letter to be shared with your staff or to be used as the impetus for training in people-first language.

Thank you Grammi for the adorable new onesie and headband!

Just Don't Use It

2012-03-07T08:44:00.003-08:00

Today I ask you to "Spread the Word to End the Word." This is a campaign to end the use of the words "retarded" and "retard" as slang.

Because even if you "don't mean it like that", there is no doubt that these words originated from speaking about individuals with cognitive disabilities. People like Cora. But now it has evolved to refer to anything that we want to call stupid, dumb, worthless, or vile. And that hurts.

Even the medical community is using this phrase less and less frequently, aware that its use as slang has made it offensive. It is now considered a disability slur, a hate word.

So take a few minutes to think about how using this word would make a mother like me feel. How it would make anyone who loves someone with an intellectual disability feel. How it will one day make Cora feel. Even if you think that this is an issue of being "over sensitive", it's really just a matter of respect.

So take the challenge today and make the pledge. Pledge to Spread the Word to End the Word and stop using the words "retarded" and "retard."

These Baby Blues

2012-03-06T09:11:00.000-08:00

These baby blues... this little face... have wound their way around my heart.

Baby Bunny

2012-03-04T19:28:00.000-08:00

Cora had her Early Intervention evaluation on Friday, so we updated her teacher and therapists on her progress on several levels and set new goals for the next year.

She was there during the evaluation, sitting on the floor playing with the speech therapist, while we tallied up the things she has been doing and the things she has not.

So, of course, this weekend she has decided it's time to start doing several new things. Of course.

She has been signing for sure now. She signs "milk" often while nursing, but not always on demand. She is signing "all done" every time she finishes a bite of food and every time I ask her if she's done. And just today (after increased efforts on my part to use it consistently) she started signing "more!"

A few times today we've noticed her sitting and practicing her signs, running through all three of them. It kills me with how freaking adorable that is! I am so proud of her.

But the favorite new thing she did today is still running through my head, making me giggle every time I think of it. While reading Runaway Bunny for maybe the third time today, each time we'd look at the illustrations, I would use my finger and point several times to the "mama bunny" and "baby bunny" on each page. I typically do this when I read the story. But I decided to add something else this time, so after pointing to the bunnies, I would point to myself and say "mama" and touch Cora's chest and say "baby."

Then I decided to see if she would replicate any of this. She isn't really interested in pointing to things or doing motions on her own (although Nick DID witness her clapping on command today!), so in true Cora fashion she used my finger to point when prompted. This time when I said "mama bunny" she grabbed my finger and touched the mama bunny picture. Then when I said "baby bunny" she grabbed my finger and touched it to her OWN FOREHEAD! And repeated it several times in succession, and again a couple hours later when I said "baby bunny" when not even reading the book. My sweet little girl thinks she is the baby bunny!!!

This just kills me with the sweet adorable cuteness of it all. It also excites me, knowing that she is becoming more and more able to convey her understanding and to express herself. It also shows me that she is understanding a lot more than what she can express (even if she refers to herself as a baby bunny...). I'm just so happy about it all.

So excited to see my girl growing and developing. So so proud.

"Look at this Mum!" Cora is showing off the onesie designed by Grammi along with Auntie Mira's legwarmers.

"A Secret Garden for Cora" quilt, made for her birthday by our lovely friend Daniel.

Getting Ready for Bed

2012-03-01T07:44:00.000-08:00

A video, as requested by Favorite Auntie Mira. Perhaps not the best resolution, but still showing some Beanie love.

Fattening Up

2012-02-29T14:37:00.000-08:00

This little girlie is fattening up quite nicely. We didn't weigh her today, but are thinking that she'll be back up to her 17ish pound self before very long indeed.

Mum mums aren't very fattening, but they sure are fun to eat!

I think I may need to re-think how I am trying to motivate this girl to move. Never what you'd call motor driven, since she's been sick and recovering she does NOT want to move. Cue the little pouty lip, face planted on the hardwood floor, refusing to budge every time I put her down. But let Daddy take out his favorite ice cream the other night and she suddenly threw herself toward him. Since Coffee Heath Bar Crunch is not the best baby food, Cora got her own Coconut ice cream to enjoy with her Signing Time video. Mmmm.

Mmmm... ice cream and Hopkins!

So Much Better

2012-02-27T14:23:00.000-08:00

I am over the moon to say that Cora is finally on the mend.

She's gotten her spunk back, if not all of her energy. She's definitely lost a bit of ground, which we are slowly working to get back. She's pretty slouchy when sitting up and really does not want to crawl or be on her tummy at all. She's gotten pretty used to sitting in my lap watching her favorite shows and now is not too thrilled that I'm putting her on the hard floor and getting her to work. But that means she's doing better, doesn't it?

The break in our regularly scheduled lives hasn't been a total loss though. This morning Cora surprised me by demonstrating her now perfect pincer grasp, as she gingerly grasped Cheerio after Cheerio, depositing them in her mouth until it was full.

She has become a pickier eater, although I did break down and introduce her to dairy in the form of honey flavored greek yogurt, which is probably the main reason she is back up another 3 ounces today. Yes, she's up to 16 pounds again!

And I don't want to get too ahead of myself over here, but I can't really help but announce that I think that Cora signed "milk" for the first time today. Not 100% sure, and given the fact that O-Beanie-One often chooses not to demonstrate all that she is able to do, we'll have to wait and see. But I have a feeling that she was signing today!

We're going to continue to try to regain a normal flow over here, maybe even doing some outings later in the week, if all goes well.

Thank you all for hanging in there with me through my worrying and complaining. My lovely girlie and I thank you from the bottom of our very relieved little hearts.

A little thinner, but still oh so cute. Or maybe even cuter...

So happy to be outside again, even if it's freezing in Portland.

"What? Is there something on my face?"

Up 3 Ounces!

2012-02-26T08:34:00.000-08:00

And proud of it!

Yes, Little Beanie Boo weighed in at 15 pounds, 13 ounces, up 3 from yesterday. And narrowly avoided the NG tube. She's one smart cookie!

My Incredible Shrinking Girl

2012-02-25T09:01:00.000-08:00

So I'm getting kind of worried. Cora has lost an additional 1/2 pound in the last 4 days. And she is nursing at about once an hour during the day. She refuses food after the first few bites. I'm not sure what else to do. She doesn't really seem to be in much pain at this point and her mood is looking up. So we're not sure why she's not taking in enough to maintain her weight, let alone gain. She could still have some throat soreness, but she's almost at 2 weeks post-op now. She could be having a hard time coping with the extra secretions in her airway from the pneumonia, or her little tummy could just be shrunken. We don't know, but one thing is certain: she is shrinking. She's losing 2 ounces a day.

She is absolutely swimming in her 9 month clothes and the size 3 diapers barely fit anymore. Even her bibs are too big now.

If she's down again tomorrow we are seriously considering putting her NG tube back in. Then we can pump in a couple extra ounces a few times a day and work on boosting her calories back up. Of course, we won't be very popular if this happens, but it will help give us a little more control.

I hate this, I hate this, I hate this. If we'd have known what was in store, I don't think we'd have ever chosen to do this surgery. We won't know whether it was successful until we know the swelling is gone and her airway is clear. She's still snoring very loudly, having some apnea it seems, and waking herself up all night long.

I am just so, so stressed about it all. Stressed and concerned and so sick and tired of being cooped up 24 hours a day. My darling husband is dealing with a very busy time at work AND a very busy quarter as a part-time student (including Saturday class!!!!). Therefore mommy duty is even more intensive than usual.

Anyway... this is my request for good thoughts for her appetite to improve. I really want her to get back to her pudgy little self, rather than shrinking before my eyes.

Friends

2012-02-24T08:41:00.000-08:00

Tuckered Out

2012-02-23T09:08:00.000-08:00

Little girlie is taking an early nap, already tuckered out from the brief and mostly sedentary activities of the morning.

I should be logging into work for the first time in about two weeks, but instead I find myself wandering through the house feeling displaced. Browsing online, I realize I'm just killing time, even though there is much to do.

I am more or less caught up on sleep, but I still have yet to get out of my pajamas today. I feel a bit empty and a bit sad.

Getting home from the hospital I thought we'd be on a steady climb back to normalcy, but it doesn't quite feel that way yet. Cora is still grumpy and tired and weak. She's refusing all but a couple of bites of solid food at a time, swallowing the first one or two and then whining and refusing to swallow. I can't tell if her throat still hurts or if she's just not feeling that well. She is nursing frequently, thank God. I am so grateful that she is still nursing, or who knows how she'd be getting any food.

But she is still very pale, with dark circles under her eyes. Looking at her skinny little body, with her whittled down head and face upsets my stomach. I guess I thought she'd be getting back to herself a little sooner.

She'll still smile when something tickles her funny bone, but it's not her usual smile. She whines and fusses after a minute or so if I'm not actively holding her. And she's very attached to me right now. Last night as Nick tried to snuggle her on his lap, she kept whining and reaching for me. Not so good for Daddy's self-esteem, but I understand. She's been hunkered down in my lap for going on three weeks now (other than when she was sedated in her hospital bed). A week of a cold, and then going on two weeks since this whole surgery went amok, it feels like things will never get back to normal.

And I miss my happy, pink little girl with her infectious smiles and giggles. I worry about all the time we're losing developing her motor skills, but I can't bring myself to force her to hang out on her tummy when she gets so tired and upset. I just want to snuggle her and calm her and make her feel safe and secure. I know that is what she needs right now, but I still worry, hoping that this period won't last much longer.

She's not on antibiotics now. She was, but only prophylactically, since other than a day or so of fever, she hasn't shown sign of actual infection. Obviously, chemical pneumonia caused by aspirating took a huge toll on her little body, and I imagine she is still recovering from the tonsillecty and adenoidectomy too. But I'm ready for her to be healthy again. Ready for our lives to contain more than mellow interactive activities interspersed between naps, much longer periods of television watching than usual, and attempts to get her to eat.

Sigh. This whole ordeal just has me tired. Hoping my baby girl is feeling better soon.

Since I'd rather not post pictures of my girl feeling the way she is at the moment, how about a photo flashback from a few months ago? Here's happy little 9 month old Cora, having a blast with her Grandpa. Love!

Not Quite Camera Ready

2012-02-22T10:11:00.000-08:00

I've had some requests for pictures of Miss Cora.

I didn't take many of her in the last few days in the hospital, partly because I was too busy taking care of her to worry about pictures, and also because they just turned out horribly.

I hate to put up pictures of her looking so sad and so ill, but by request, here are a couple.

A couple days ago still in the hospital. Sitting in the big-girl bed without her mama for a minute. Legwarmers on arms and legs, IV in her forehead (before it infiltrated and caused her some major distress), and the hated nasal cannula still pumping in the oxygen. Exhausted all around.

At home today, lying on the hardwood floor after her first real attempt at tummy time. She did manage to army-crawl a few inches, then tired out and rolled over, looking up at me with this sad, tired, little Skinny Bean face. At just about 16 pounds now, she's looking awfully thin and worn out. I can't wait to put some meat back on these little bones.

The only half-smile I've caught on camera. She will smile occasionally, but has not nearly regained her sassy little personality back. We're still doing a lot of sitting and resting and watching her favorite show (Baby Signing Time is my hero, of course, and a bit of Elmo for variety). I imagine I'll be having to work hard to un-spoil her once she's feeling better.

Can't wait to get her back to this...

Home Sweet Home

2012-02-21T14:10:00.000-08:00

Cora returned home this afternoon!

After a nice familiar bath, some homemade food, clean bedding and some more snuggles, she is sleeping in her own little bed. And boy does she need it. Neither of us slept much last night. Or in the last week. I guess much longer than that, when you think about it.

She is feeling a lot better. Still rough-sounding breathing from the gunk in her upper airway, but lungs still sound good. A little bit of residual pain, and she hates taking any medication after all this, but we're still giving her a bit as she needs it.

I am happy to have her home. Even with a few scratches and scrapes, and a loss of 1.25 pounds (even though she has been gradually ramping her nursing back up in the last few days). She seems happy to be home too. When we put her in her carseat she just started grinning.

Whew. I am looking forward to a healthy girl for a while. No more surgeries.

Now we'll just hope that her sleep starts to improve.

Should be Out of Here Soon

2012-02-20T16:53:00.000-08:00

Well the day is winding down, and here I am only now logging onto the computer. Since I've had a few texts and messages asking about Miss Cora I figured I'd be remiss not to give you all a little update.

She did get to the pediatric floor yesterday afternoon and has done pretty well. She had some trouble with her IV last night that caused us all a bit of distress, so that's been out since then. Which meant that she has to take all her fluids by mouth.

Today Nick actually went in to work, so it's just been me and Cora, although we enjoyed a visit from a good friend and have been visiting with nurses, doctors, respiratory therapists and a speech therapist.

Her oxygen levels are good, although she did need a small amount of low-flow oxygen overnight. Her lungs still sound good.

But she's still trying to clear a lot of icky stuff from her airway and it seems to be collecting around her voicebox. So she sounds a bit like Darth Vadar at times, a bit like a percolator other times, and the rest of the time like she's snoring while awake. It was making me very nervous this morning, but seems to have waned a bit, so that is reassuring. The RTs (respiratory therapists) assure me that her lungs sound good and that it's best if she can clear it herself. So she's working on that, but it's not an easy thing to do.

She has been eating well and today has had enough wet diapers to show she is not dehydrated, but she was also choking quite a bit while nursing this afternoon, so I was worried about aspiration. Enter the speech therapist who gave some tips (although not much I hadn't already thought of.)

But overall I feel pretty good about things. We probably could have gone home today, but I didn't want to be worried and second guessing myself and thinking about an E.R. trip, so we decided to feel more confident that she is, in fact, ready to go home.

Is all this way too much information? If so, oh well. It's nice to have a record, although I am hoping that the finer details of this week start to fade from my memory all too soon. Even though this is her third hospitalization after a NICU stay and open heart surgery, I'd have to say it's been the scariest and the most stressful. Thank God it is coming to an end soon.

I really should have taken pictures today, because Cora has finally started to act like herself again: smiling and playing. She's still in a bit of pain, which sneaks up on her occasionally, but we're managing it pretty well.

But her sweet little pudgy baby rolls and chubby cheeks have certainly whittled down. She almost looks like a different little girl. I am definitely looking forward to getting to fatten her up again very soon.

Better and Better

2012-02-19T07:09:00.000-08:00

Little Beanie was taken off the high-flow cannula last night is on regular low-flow oxygen now! Go Cora! Her doc was just in and said her lungs sound much better.

She is nursing well and is not showing signs of aspirating, thank God.

Everything is improving. They expect us to get out of the PICU to the pediatric floor today, where she'll continue to be treated with Cpap and antibiotics. Her pain seems under control, so that's good.

She's alert but pretty serious, although we have caught a couple of little emerging smiles. She's playing a bit with her toys, but is still very weak. We may even try a bit of puree today.

She still has to get off all her oxygen and be consistently drinking well before we can leave the hospital. So those are the next goals. But with the progress her miraculous little body seems to be making, I doubt it'll be too far off.

I am one grateful and happy mama. I slept more than 6 hours last night and get to spend the rest of my time here snuggling up with my skinny little Bean. Without all the panic and worry of the past few days. So hopefully from here on out it'll just be a waiting game for her to improve enough to be released.

Again, thank you to everyone for all your love and support. I know that it has made a world of difference.

Looking Up

2012-02-18T13:53:00.000-08:00

Woke up from another 5 hour sleep at 4:30 to find my girlie doing much better. The oxygen percentage and volume were lower and her respiration and oxygen saturation were fine.

She was obviously feeling better, as evidenced by her very upset little self. Knowing that she was starving, we opted to give her some Fentanyl to calm her down for a bit without sedating her and to make her forget about her hunger for a bit. She slept for a few minutes, then was awakened for a chest x-ray. In the ICU there are frequent interruptions, so she was kept agitated and upset for what seemed like forever.

Then the doctor came in and gave me some good news. He said it was OK to try and breastfeed her. Hallellujah! That also meant that he is confident that she doesn't need to be intubated!

I was counseled on what to watch for to look out for aspiration and the nurse watched her at first, then left us alone as Cora began to doze contentedly, occasionally groping around for another quick snack. Things seemed pretty good. But then I got a bit of a scare as she sputtered and spit up a small amount. Worried she was aspirating again, I paged the nurse, who was busy with another patient so another nurse came in. It was kind of inconclusive, but I don't really think that she aspirated. But still, it worried me. A few minutes later her sats dropped a bit and her respiration and heart-rate got higher. But it was pretty hot in here, so that could explain it. Another Cpap treatment and all her numbers normalized. But she was still pretty aggravated.

I eventually got her to sleep a real sleep. Then I could relax for a second for the first time in several hours. Funny. Things were better, but still stressful, still exhausting, still worrisome. I so want her to be able to nurse, but am afraid of the possibility of aspirating again. I guess that's a pretty normal and valid concern.

Her next nursing session was better, although she did gasp a little a few seconds later. Based on the nurse's opinion aspiration would happen while she is drinking, so again, she is not too worried. And all her numbers are good, so it seems fine.

At this point her oxygen is at 30% and the high-flow volume is at 3. That's down from 100% and 12 initially.

Her doctor thinks that at this rate she will likely be moved from the PICU to the pediatric floor on a regular oxygen cannula (rather than the high-flow) tomorrow. Then once she is able to be off oxygen and is eating with no problems she can go home. He says her lungs probably won't be perfect at that point, but definitely stable. They are continuing the antibiotics at this point, so that her aspiration pneumonia doesn't turn into a full-blown lung infection.

For now we're encouraged to sit her more upright, although she's so weak that she can't really hold herself or her own head up. Hoping that she doesn't experience any significant regressions in gross motor as a result of all this, especially since it's not her strongest suit anyway.

Yep. Major swelling causing aspiration causing pneumonia. Certainly not a routine recovery from a tonsil and adenoid removal. But we are very grateful for the excellent care she is getting and for all the love and support being sent our way. Thank you to all!

Slow Gains

2012-02-17T21:09:00.000-08:00

Slow going over here. They are gradually lowering the oxygen pressure and reducing the oxygen percentage. Her Cpap treatments continue. She's gradually improving with mostly good oxygen saturation (although just dipped a bit while I sit here).

But they still say that she could be intubated if things don't improve fast enough.

Sad for her, because this afternoon she finally woke up. Woke up after being somewhat sedated and started to be herself. Except that herself is pissed! She talked a little and cried a lot. Soothed by me yesterday, now she seems to want to nurse and is mad that I won't feed her. Of course she is hungry, since she hasn't eaten since Wednesday, and even then only a small amount of nursing. She hasn't had much since Sunday, actually. I imagine she'll be a scrawny little Beanie when this is done.

But she can't have anything other than I.V. until they are certain she won't need intubation. It could cause more aspiration and then we'd be starting all over.

So for her sake, I'm hoping her little body can kick it up a notch and speed things up so she can eat, get her energy back and be back on the way to wellness, health and her own home sweet home.

I leave you with the two of us snuggling in the crib this evening, trying to calm down my very unhappy girlie.

And to show how very cute she is, all a-mess and covered in stuff, here are some shots of her yesterday, rocking the chin band. They tried this for awhile to see if it would help her close her mouth and breathe through her nose and help the cannula to work its high flow magic. Since she's not wearing it today I guess it didn't dramatically improve things.

Nighty-night. Fingers crossed for some good gains tonight. Darn it her sleepy little oxygen sats are a bit low. Pick it up little lungs!

Update in the ICU

2012-02-17T10:01:00.000-08:00

Well it seems that we finally have a reason for what's been going on. Two reasons, I guess.

1. Significant swelling from the T&A, which we already knew.

2. That swelling seems to have contributed to her aspirating. (This, we didn't know. And damn it, I knew something was going on while she was nursing and taking pain medication, but nobody listened to me. I'm discovering that my thoughts and instincts have been more right than I've given myself credit for.)

So at this point they are treating her aspiration into the right lung with Cpap treatments every 2 hours. Over night she seemed to be gradually improving with increased oxygen saturation.

This morning, though, her sats are still up and blood gases pretty good, but she's working harder to breathe again. The updated chest x-ray shows some improvement.

The main concern right now is that she has still been needing 50% or more oxygen in the cannula. And apparently if they can't reduce that amount with good results today, she will still need to be intubated. We're glad that the throat swelling is down after the steroids and such, but obviously intubation will probably increase that. And they'll need to sedate her and give her a paralytic to do so. We know that she is very sensitive to meds. That she takes forever to wake up after sedation and that it whacks her out big time.

This morning, as I was snoozing away for 5 whole hours (a record in the last 5 days!) she was really agitated so they gave her Ativan for anxiety. She's been pretty much out for about 3 hours Her sats are still in the 90s, but I imagine she would be doing better if she weren't sedated. Last night when she got agitated the nurse let me climb into her crib with her (wish I'd had a picture of that) and I was able to calm her down. Hopefully once the Ativan wears off this can work again. Although they are going to have to use an NG or OG tube to remove the air that's building up in her stomach and that is BOUND to piss her off. So we'll see.

So all in all, things are looking up to a degree. At least we know what the problems are at this point, and the treatment is helping, but just not quite fast enough.

So if you're still thinking of our girlie, any thoughts or prayers that her breathing continues to improve and that her oxygen can be weaned throughout the day would be wonderful. So far, the love that she's been getting has definitely been making some waves. So thank you.

Ups and Downs

2012-02-16T18:00:00.000-08:00

The last few hours have been stressful. Her O2 sats keep going up and down. So that keeps requiring attention.

Her lungs and breathing SOUND better and her blood gasses show that the CO2 levels are good, but the oxygen levels not so good. So there's some imbalance in there that needs to work itself out.

And she's had a fever, despite steroids and Tylenol. The new doc on duty doesn't seem all that concerned about why, but the ICU nurse that's been with her all day is a bit concerned. It's a bit down after her last dose of Tylenol, but will have to be monitored.

And she's been very out of it and lethargic. Could be the Precedex (sedative) so they're weaning her off to see. For a while it was hard to wake her up.

So there's still some ground to be covered. Not quite of the woods yet.

Thanks for continued thoughts and prayers.

Heading in the Right Direction

2012-02-16T16:18:00.000-08:00

Things are improving here. She is getting more stable. The epinephrine nebulizer and the steroids seem to be helping reduce airway inflammation. Her breathing is less labored. Her little chest isn't sucking in and out nearly as much now. Her O2 sats are mostly holding in the early 90s on 50% oxygen with a somewhat reduced flow. The sedative-type drug (they explained it as calming her nervous system, rather than a true sedative or anti-anxiety med) is helping her to sleep. They haven't given any more narcotics, but are keeping her just on Tylenol. She does have awfully pale skin for some unknown reason, but it seems likely it's from the meds.

She is waking up periodically and isn't very pleased with her situation, using every opportunity to try to grab the high-flow oxygen cannula off her sweet little face.

When she does open her little eyes half-mast, she looks around at us, questioning why the heck we're doing this to her. Then with a little humming and patting, she goes back to sleep.

At the moment it looks like she's improving enough that intubation won't likely be necessary. That's good, since it would further aggravate her little airway.

I think the best part is getting to snuggle her up in our laps, tubes, monitors and all, so that we can reassure her when she wakes up mad. She seems to be much happier with the situation herself.

Thank you all for such kind thoughts and words and for so many prayers. Little did I know that yesterday as I prayed that the swelling in her throat would get better, that this is what it would take. But I am very grateful for the care that she is receiving and grateful that she is gradually improving.

Now we're hoping for the swelling to keep going down, for her fever not to go up, that her pain is kept under control, that she can rest, and for things to keep trending in the right direction.

Field Trip to the ICU

2012-02-16T11:08:00.000-08:00

Last night was very scary over here.

As yesterday progressed Cora continued to have trouble nursing. She'd try and then stop. I could hear the liquid getting caught in her throat, choking her and coming out her nose. But still, nobody seemed too concerned. She had a wet diaper at 6pm so the doc decided not to start an I.V. So after an evening of fussing and taking meds (a bit late), and just all around being stressed and tired, Cora and I finally both slept at about 1:00 am.

At 2:00 am I woke up to lights in the room and found 3 nurses huddled around her suctioning. Apparently when they came in to do their spot check of her O2 sats they were in the 50s. On a normal day-to-day basis she's at 100% since her heart surgery. And so far throughout her stay she had been in the 90s even with her loud somewhat labored breathing post-op.

But last night they dropped big time. So I watched as the nurses suctioned her and put in a nasal oxygen cannula. They were worried about her breathing and the sound of her lungs so put in a call to her doctor, which took awhile. In the meantime I was holding her in the room as she grunted, struggling seriously to breathe, her chest sucking in and rising and falling, while her oxygen levels continued to drop. So they started a full face oxygen mask. Then we had a repeat performance of her breathing getting very labored and her grunting to breathe, obviously very upset. Another nurse walked into the room as she was desating and got VERY worried. She pretty much refused to leave, insisting that the chest x-ray get there NOW and constantly paging the magic-IV man, who was on a transport and wasn't responding.

During this time I was calling and updating Nick, who actually had gone home to sleep prepping to go to work today. Eventually I had to insist that he came in, as a visit to the ICU was impending and her condition was getting scarier and scarier.

By that time, a chest x-ray had been done and the pediatric nurses attempted an IV on my very dehydrated, in pain (past her pain med dosage with such difficulty breathing that they couldn't give her anything by mouth due to fear of aspiration). Picture a screaming Cora with no tears, open eyes that just didn't seem to focus, and several very worried nurses. Let me tell you this girl was not happy about any of it. But by this time she was so dehydrated that other than crying she had no energy to fight.

The call finally came to the get her into the Pediatric ICU, but while we were waiting for a room, things weren't remotely stable, so the nurses paged the rapid response to her room (yes, a hospital intercom announcement called the Emergency Pediatric Rapid Response Team to our room number) and then the room filled with a whole bunch of other specialists A respiratory therapist, the charge nurse at the PICU and who knows who else were there in a second.

We ended up in the ICU shortly thereafter, where in fairly short succession, the magic-IV man came and successfully got an IV in her scalp and they were able to start fluids and meds as the doctor updated us on the plan.

At the moment, it seems that all of this has been caused by severe swelling in the airway after the T&A. Initially the ICU doc expected that he'd have to intubate her just to treat her, but now they are hoping that she continues to improve. She is slowly improving. Her blood gases initially were pretty bad, but are slowly improving. She's on pain and anxiety meds, fluids, and steroids to help reduce swelling in her airway. And it seems to be helping. When we got here she was on 100% oxygen, but is now at 60% (although as I type this her sats are again in the 80s and dropping... maybe they'll be turned up again). She's sleeping finally, but again isn't breathing as well. Now they're shifting her around, thinking that her sleeping position is obstructing her airway. That's the tricky thing with sedation. They need to keep her calm (a necessary thing for my agitated girl) but then that can contribute to her airway problems). Again sigh.

We're just waiting, hoping that the swelling goes down enough with intubation, which would allow her to breathe but would worsen the actual swelling and contribute to the problem.

So I'm happy to say that things are slowly improving, but still not good yet. And that's hopefully where you can come in. Any thoughts and prayers would be appreciated.

I'll try to update as we go.

Recovery Bites

2012-02-15T17:10:00.000-08:00

Should I be surprised that a one-year old has a hard time after having her tonsils and adenoids out? It seems that these surgeries are often pretty rough on little ones, even though I don't think that most parents are really given an accurate idea of what to expect. Glad that I read other parents' accounts so that I am not totally floored, but even so, it's not fun.

We had a hard time yesterday getting Cora to take much fluid after coming home from the hospital.

Then this morning she awoke with a fever and continued to refuse to drink. After giving her the pain meds, she took about a teaspoon of chilled breastmilk by spoon, only to vomit it all right up. Then her fever rose even more. She went about 15 hours without urinating, and now it's been 8 hours yet again.

Yes, we're back in the hospital. Funnily enough, once we got here Cora actually started nursing (the first time she took much volume since surgery day). Thinking we might be in the clear, her doc opted to wait on the I.V. And we're still waiting. If she hasn't peed by 8:00 (which will be 11 hours and will make only 1 time in a 24-hour period) then he'll start the IV. Her nursing has waned a little too. Sigh.

She has spent almost the whole day here sleeping. Odd. Really. Because if you know anything about why we are here in the first place, it's because Little Beanie doesn't really sleep. At least not for more than an hour or so at a time. Today she would wake up and nurse, cry, write around and go back to sleep. Good, I guess, since she obviously needs it. But disconcerting too.

We also had to fight for some new pain medication today. Based on dozens of parents' online accounts, Lortab is notoriously painful for kids to swallow after a throat surgery. According to online ingredients lists, it's an alcohol base. Stands to reason that it would hurt to pour alcohol on an open wound, doesn't it? And Cora panics when we give it to her. At this point, she's getting mad even with regular Tylenol, so we imagine she's developing fear of the meds. We stopped giving her the Lortab this morning, noting that it turned her into a wackadoo and that giving it to her obviously hurt a lot.

But when we talked to her doc, he swears that it's a water based medicine and that it's only the taste that kids don't like. Even though all the internet stuff says that there's alcohol in it and even though it obviously is very painful to take. I may not be a medical doctor, but I know when something is hurting my baby, and that stuff does.

So after some back and forth, we finally got Tylenol with codeine. She's still mad when we give it to her, but we can tell it's not as painful. So score one for us. Finally.

Anyway, she's actually awake for pretty much the first time today. Taking microscopic sips of watered down apple juice and getting her Signing Time fix for the day. I'm getting ready to try another nursing session to see if we can get one more wet diaper before we have to subject her to a likely horrific IV stick. (I should think more positively, shouldn't I? So, yes I envision it going smoothly with just a tiny bit of crying...) (Maybe this is a lot of parentheses, but for people who aren't a parent to a child with Ds, it is very common for our kids to be very difficult for blood draws, IVs and such.)

OK, sorry for rambling. Gotta get back to my girl. Thanks for keeping up with us.

Maybe photos tomorrow? No promises at this point.

My Little Valentine's Gonna Make a Break For It

2012-02-14T11:43:00.000-08:00

We're planning on getting out of the hospital here in a couple hours. Things are going pretty well now. She's nursing a little, and ate a little applesauce. Her oxygen levels are good.

Yesterday evening her pain was not controlled well. It seemed like the 4 hour dose would only hold for about 2 hours. Her first nurse told us there was nothing they could do about it, but I had the second nurse call her surgeon for some additional meds. They gave her a dose of morphine, which really did help manage her pain. Even with only the one dose, her other pain med is now seeming to control things much better. But she had a strange reaction to the morphine, causing thrashing and itching and all around restlessness into the wee hours of the morning. She finally slept some, and today is napping, nursing for a minute or two at a time, watching Baby Signing Time (truly our saving grace) and fussing a bit.

She still freaks out when she takes her pain meds, but is overall doing much better.

Thanks for all your well wishes. We'll be headed home soon to try and manage her pain there.

Happy Valentine's Day, everyone!

Oh yeah, I decided against posting her picture today. The right side of her face is very swollen and red since she can't stop scratching it and she almost looks like she may be getting a bit of a shiner (or two). She has definitely had better-looking days. I promise to post some new pics soon.

Out of Surgery

2012-02-13T15:35:00.000-08:00

Little Beanie is snoring way in the hospital crib, as we try to rest for a bit. It's been a fairly long day, but things are going pretty well.

Everything got underway a little late this morning, and then the blood draw that we had requested be done while she was under anesthesia took longer than expected, so overall the whole thing took a while. But he discovered that her passageways look normal with no obstructions other than the tonsils and adenoids. The adenoids were obstructing 60-70% of her passageway, apparently, so out they came along with her good old enlarged tonsils.

After being off anesthesia she slept for over an hour before we could see her. It was a little nerve-wracking watching other parents keep going back while we continued to wait, but those drugs knocked our girlie right out!

And then the waking and the crying began. She was obviously in quite a bit of pain, alternating between falling asleep and crying. But I can calm her with cuddles and songs, so that's what we've been doing. That was my biggest worry going into this, hearing about how painful and rough the recovery process can be, especially for very small ones. Anesthesia is always a concern, but since she's already been through it a couple of times before that was less worrisome.

It seemed like forever until we could give her the first dose of post-op pain meds (but maybe that's just because the entire day has seemed to take forever), and they were obviously quite painful to swallow. But they've helped. She actually sat up afterward and played a little.

But she was still coughing infrequently over the weekend. And now with all the fluids gurgling around in there, and I imagine, the inflammation, she is coughing even more. And each time it hurts and makes her cry again. Right now she's sleeping, snoring away and making little wet gurgling sounds, and every little cough wakes her up and starts her crying again. I'm hoping that the 4 hour pain med schedule works for her.

In the meantime, we're just hoping that she gets some rest and that we all can manage a little shut-eye in this hospital room tonight. We're keeping fingers crossed that we'll get to go home tomorrow. The doctor wants to make sure that she's able to get enough liquids by mouth before he releases her, and also that she can keep her oxygen levels good. So far so good. She's even nursed a little. Go Cora!

I'll keep the updates coming. Thanks for all your thoughts and prayers.

Playing with Daddy while we wait.

Sitting up and alert once the pain meds kicked in.

Looks like her playful spirit is back. In small bursts at least.

Snuggles and singing are doing the trick.

Update: the darn meds don't hold her for nearly long enough. So lots of screaming and crying in pain but nothing we can do. Just gave her the next round, causing hysteria like I've never seen. Waiting for them to kick in. Feels like this is going to be rough.

Getting Ready for T&A Surgery... We Hope

2012-02-10T14:45:00.000-08:00

We've been hunkering down this week, trying to beat the crud.

The week started off pretty seamlessly. Miss Cora had two appointments on Monday, which went pretty well. First off she visited the audiologist again, who gave us pretty good news. She said that Cora seems to hear speech very well and that she shows response to subtler tones too. So overall she said not to be too worried about her hearing at this point. I went in expecting another "inconclusive" diagnosis, which seems to be the norm with genetically-enhanced little ones, or so I hear. Her ENT (a couple of weeks ago) says she doesn't have fluid build-up, which is great, since he also says her canals are too small to place tubes. So far so good, but of course we'll continue to have her monitored.

Her pediatrician visit went well too. Cora's pediatrician is wonderful, so seeing her is always fun, until the shots at the end. Her doctor is very patient with my LONG list of things to talk about and we always get lots of things planned for the next few months.

But the next day the crud hit. At first I thought it may be just a vaccine reaction, but then Nick got sick. And then I heard about Cora's little sometime-friend Samara. (I only say sometime-friend, because although Samara LOVES Cora, little Beanie has decided that big kids are scary. She needs a lot of warm up time. During our Saturday dinner with friends it took the Beanie-one quite a long time and an episode of Baby Signing Time to convince her that she didn't need to cry every time she looked at 4-year old big girl Samara. Thank goodness Samara is such a sweet and patient girl. And really too bad that Samara came down with the crud the very next day).

In the meantime, Nick got on meds for bronchitis, and we started talking to the ENT's office about Cora's planned tonsil and adenoid removal set for this coming Monday. According to the doc, a stuffy nose is fine, but a deep cough that impairs breathing or a fever are reasons to cancel the surgery. And unfortunately, the surgery schedule is full for another month.

Another month of apnea and constantly interrupted sleep does not fit well into my life right now. Especially since this week we were lucky if Cora ever slept an hour without waking. She's boycotting her usual naps this week too.

Thank goodness, her fever is now gone and she seems to be feeling (and looking) much better. But she does have a very occasional wet sounding cough. I think it's just the last of the crud trying to get out. No trouble breathing, no wheezing, and no rattling. And I really think she'll be fine by Monday. So we're not going to cancel it. I guess the worst case scenario is that the anesthesiologist will make the call that she's not healthy enough and cancel it when he sees her on Monday (yes, I know... not ideal for their schedule). And then we'd wait another month, which would be a drag.

But I'm picturing things clearing up really well. My own crud is almost gone, Nick's getting his voice back, and we're just keeping on pumping little Cora full of good stuff like Mommy's milk, lots of cuddles and oodles of Signing Time. This week and next week she will certainly be a couch-potato in-training.

But if all goes well, on Monday we'll check into the hospital at 8am for a 9am surgery, after a few hours of being deprived of nursing. Hopefully just a T&A, but if the laryngoscopy shows anything else, we may have another last-minute procedure thrown into the mix. Keeping fingers crossed that this won't be needed. And that her very infrequent cough has resolved by then. And that they'll release her after just a one-night stay. And that she heals quickly, can nurse, and isn't in too much pain. Yes, I guess, hoping quite a lot. No, it's certainly not open heart surgery, but it's stressful nonetheless, especially knowing that our baby will be in pain when it's done.

Hoping you all have a great weekend. I may actually make an attempt to get myself and Cora out of our pajamas tomorrow. We'll have to see about that.

Still in a good mood, even with a fever and the sniffles. Daddy is wearing his mask.

Oh, my poor little crud-ridden, insomniac girlie. Not her best beauty-shot.

Her best zombie impression. On the mend, and oh so serious....

Sweet Naptime

2012-02-03T14:48:00.000-08:00

Snuggling Cora into me after she finishes nursing, the afternoon sunlight peeping in through the tiny holes in the blinds, I watch her grin at me, roll away, then roll back and reach for my face. She giggles and grabs my hand, peering into my eyes with pure glee. Together, tucked into the covers, we are both safe, warm, sound... complete. As the wind blows the branches outside; blowing, whistling, howling, we cuddle into one another.

Naptime, yet she's not even close to going to sleep. I realize that typically this would frustrate me, hurrying her to sleep only to rush out to my work, my computer, making dinner, doing laundry, cleaning the kitchen or on an indulgent day, maybe sneaking a few pages in my Kindle.

But for now I hold her in and smell the sweetness of her baby shampoo. I tickle my fingers up her sides, reveling in her laughter, even knowing I'm supposed to be putting her to sleep.

Uh oh. Daddy comes in. He's caught us. Guess it's time he gets a crack at her.

The sounds from the bedroom are quieting. Looks like Daddy has the trick after all.

Sleep well, baby girl.

Together, we can do it

2012-02-01T19:15:00.000-08:00

Tonight I am inspired and moved and joyful. Some of my incredible blogging friends have been working hard in the past few days and it is paying off.

The Dirkes family is flying to Eastern Europe on Monday for a court date to get their little girl Charlotte. She is a beautiful little girl who has spent her life in an orphanage simply because she has an extra 21st chromosome. This adoption is critical, not only because it will take Charlotte from an orphanage and put her in the arms of a family that loves her, but it is critical because it will save her life. Without being adopted, Charlotte would soon be transferred to an adult mental institution, where her chance of survival is heartbreakingly small and the quality of life is abysmal.

Cora's friend Ellie knows Charlotte's family and hope to have Charlotte home by Ellie's first birthday in March. And this is a goal that I am thrilled to see happening. In just the past couple of days, almost $7000.00 has been raised toward the cost of the Dirkes second family trip next week.

Now, any donations will go toward the cost of the third trip in March,when they will bring Miss Charlotte home!

Please take a few minutes and visit Charlotte's mommy's blog. And if you're still not sure what kind of difference even your own small donation can make, visit Patti's blog to hear how much this kind of donation can really mean (but make sure to take a tissue with you).

To see who else is helping Charlotte come home, visit Charlotte's friend Ellie and her mommy, Megan and see what she wants for her very first birthday, or visit Samantha and her mommy, Becca, Ellie Bellie Bear and her mommy, Anna, or Moxie and her mama, Meriah.

Yes, little Charlotte has a wonderful team of people on her side.

Please help, even if it's just a little... help bring Charlotte home.

In Between

2012-01-30T21:55:00.000-08:00

Today I read a story that brought tears to my eyes.

If you're interested you can find it here: nice story

While I feel heartened by this story, I also feel a bit uneasy. Part of me is overjoyed to read about the children's kindness by giving this boy such joy and I hope that my daughter may some day have this kind of acceptance if she needs it. But then I think about another side of it: that she may not need that kind of special treatment. There are those who feel that their children with Ds are limited only by others' expectations. Those who would feel offended by this kind of treatment. They tell stories of their children being the smartest kids in their class, express frustration that society expects their children to have delays, and are bound and determined to do everything in their power to help them realize their full potential.

I feel that I am determined to help Cora realize her full potential. But I also am wary. I worry that if I refuse to allow her to experience any delays, then I will be disappointed and let down if she does not do things "on schedule." And I don't want my expectations to compromise my acceptance of her.

We work with her to give her opportunities to succeed: We give her supplements. My husband builds her tools: a crawling track, a bench, a desk, a weighted bin to pull up on. We both put her through "therapy-play" on a daily basis. She breastfeeds and eats almost exclusively home-made, high-quality whole foods. We work with her on a baby reading program, sign, read and sing to her. We expose her to our community and to age-appropriate activities for typically-developing children, as well as events for people with Ds. We take her to the naturopath, the chiropractor, another who does craniosacral, along with a myriad of other "required" medical specialists. We expect her to wow us with her life, and we are encouraged and impressed regularly by her accomplishments.

Yet she's still developmentally delayed in gross motor, fine motor and speech. She shows comprehension in many ways. She understands phrases we use commonly, she is able to do the motions to her favorite songs (though she chooses not to most of the time), she is able to feed herself (though she chooses not to most of the time), she is able to mimic some of our sounds (though she chooses not to most of the time), and she responds appropriately in many situations. But there are many things that typically-developing children her age are doing that she does not do and just doesn't seem ready to do. Whether she can yet or not I don't know. Most of the time it isn't clear if she understands what I say. She doesn't say words yet (although she consistently says "hi da" to both me and her dad, which he is convinced is a greeting she gives to us both). Is it wrong that I am skeptical? I so want to believe that she is capable of greeting us verbally with intent. I feel horrible that I doubt it. But what if it's just a sound she likes to make? How do I know? How do I expect the most of her and at the same time avoid disappointment?

I say these things aware that she has delays, and accepting them as part of where she is now. I expect her to catch up. I expect her to be reading before she enters school. I plan for her to be included in a regular classroom with peers her own age. But I am also learning that I am okay with it if that is not to be. I can expect that of her and want that for her. But I also am learning to be okay with accepting her for where she is at the given moment. I have to be okay with the fact that things may be more difficult and may come slower for her. I can expect her to graduate high school with her class and go to college at the same time that I can accept it if her own goals are different, or if her full potential doesn't look exactly the way I always hoped it would.

Because really, her value doesn't exist in what she is able to do. It exists in her. Just her. I see it in her smile and I feel it in her squealing giggle, barely able to be contained in her voice and in her face as I bounce her across the room. I see how other people respond to her contagious babbles and coos. I see them lean in and feel her pure joy for those moments, the way I am blessed to feel on a daily basis.

I expect her to have a grand life. The value of that life will not be simply the compilation of her accomplishments.

I can expect her to achieve. I can expect her to soar. I can set no limitations and support her to reach her highest potential. And I can accept it if that potential looks completely different from the definitions I had set in my pre-Cora life. That may sound like a contradiction. But I am learning that it is not. I know that in our society we tend to pit the things we view as opposite against one another, convinced that they cannot co-exist; that it isn't possible. Perhaps I'm re-learning to appreciate a more Tao-ist view and learning to find contentment somewhere within my seeming contradictions. I could think that maybe I'm becoming more relaxed; even though I don't think I'm really "there" yet. (Those who know the anxious, organized, plan-ahead me are probably smiling right now.) I guess I'm still learning where my own place in this in-between world really is. I guess I'm finding it all the time.

Hallelujah! Ready, Set... Surgery!

2012-01-26T11:03:00.000-08:00

After yet another night of insomnia, I am turning into a real basket case. Seriously, I've felt on the verge of crying all day.

Yet, we had some great news this morning. We went to our first visit with the ENT and I am so glad we did. Our pediatrician had advised us to wait until we had the sleep study done, but considering that we can't even see the sleep doc until mid March and a sleep study probably won't happen for weeks after that... well, we just couldn't wait.

After the exam, he told us that her tonsils are huge and that he'd like to take the tonsils and adenoids out right away. The scheduling process is underway and we should hopefully have it done in the next 2-3 weeks, fingers crossed. I came very close to crying with happiness (although not a huge stretch for sleep-deprived me.)

Who else is thrilled to find out their baby should have surgery? In this crowd, I guess I'm probably not alone. Her doctor says we will probably notice an improvement in her breathing as soon as the same day. And obviously, we hope that this will improve her sleep, and thus, improve ours.

So I am very, very excited. Happy that there actually is something going on. Happy that we can take some action even without waiting forever for the blasted sleep study. Happy that it's not all in my mind. (Well, chances are, my insomnia is in my mind. The constant wake-ups courtesy of Cora are not.)

So that's the update.

I think I'm too tired to post a picture. I've certainly been too tired to take any pictures. Rain check?

Oh, Mr. Sandman?

2012-01-25T11:14:00.000-08:00

Have I mentioned lately that there's not a lot of sleeping going on around here?

I think I may have, once or twice.

Things came to a bit of a desperate head a few days ago, and after much pleading, Nick finally agreed that we could officially start taking shifts with the Bean to at least try and get half-nights of individual uninterrupted sleep. So that was working well. After a couple days of OK sleep I finally got a good night of sleep (because I went to bed so dang early, I got almost 7 hours of sleep before going into be awakened frequently for the next 3-4 hours.) So yesterday I was feeling pretty darned good.

Then last night, I tucked myself in at the "late" hour of 9:30. And looked at the clock until at least 3:30. I tried reading. I tried breathing and meditation exercises. I even tried to count sheep. Why?! Why?! Then I settled in with Cora and actually slept, if you don't count all the wake-ups.

I know everyone deals with insomnia sometimes. Some people deal with it all the time. It's just that it seems that half my mental energy is directed at helping Cora to sleep better, so I feel so defeated when I can only blame my lack of sleep on me.

Not to say that I I'm never tempted to blame it on Cora. But really, how can I? She's 12 months old. On a good night she wakes up only 8-10 times. On a bad night it's more like 50 times. Sometimes I just lie awake listening to her try to breathe, but then her breath gets stuck and she gasps for air, waking herself up. The poor girl just needs to get some sleep. She needs to help that little developing brain out. But she can't, because a couple hours into her night, she just can't seem to stay asleep.

Do I sound a little manic? A little desperate? Actually, I feel a lot desperate.

One thing I've noticed about becoming a mother is that whatever crisis you're dealing with, it feels like an enormously huge thing. Like heart failure. Or open heart surgery. Or constipation. Or congestion. Or not sleeping. You'd think that heart surgery would trump not sleeping, but right now not sleeping feels almost as bad. Almost.

Well, now we're in full pursuit of some sleep help but there is a LONG wait to get in. Dang it! Why did I drag my feet about this for so long? Now we have to wait until mid March to see the sleep neurologist. We're seeing the ENT tomorrow, even though our pediatrician basically told us it would be a waste of time to do before seeing the neurologist. But oh well. We'll take what we can get.

OK, time to go get the little girl who just napped for a whopping 40 minutes. Here's hoping tonight's a better night.

And, for sticking it out through this whine session of mine, how about a cute picture of Miss Beanie to take our minds off it all?

A bit blurry, but this shows how much she loves Baby Signing Time. I wonder... how bad would it be to play our 4 discs over and over today?

Oh, These Rainy Days

2012-01-22T17:15:00.000-08:00

I've always loved the rain. There are those who think I am crazy. Those who cannot comprehend why I was so happy to leave sunny San Diego to come back to the Pacific Northwest. Those people may not have see-through white melanoma-prone skin, but still...

That said, rain-loving me is getting a bit tired of it. When all our friends and family in Seattle got snow days last week, our snow always melted by morning and then swiftly turned to rain. And these cold, sideways raining days are not so much fun when you want to play outside.

So we've been having cabin fever. Perhaps that's why Cora is rocking her mismatched stripes in these pics. Or perhaps not.

We tried to fill up our rainy weekend with fun family things to do. So we went to OMSI, the Oregon Museum of Science and Industry. Pretty fun and I know it'll be more fun when Cora is old enough to actually play with some of the cool stuff. Even so, her Daddy had fun showing her around.

He is a biochemist himself, and although not working in a lab at the moment, has spent many moons in fashionable chemistry goggles. So Cora wore them quite naturally too.

We filled in the gaps with some swimming, Baby Signing Time, books and songs, and some fun therapies at home. I don't think Cora thinks therapy is as much fun, though. She still gets majorly mad when we try to bend her knees, or heaven forbid, coax her rigid little form into a quadruped position (hands and knees for those people who don't participate in Early Intervention or other physical therapy).

Still, it was a fun weekend. But I know that we will gladly accept the return of springtime, when Cora can return to one of her favorite activities: swinging. Even just a dry, moderately cool day will do.

Decompression

2012-01-18T21:45:00.000-08:00

I'm sitting down now, for once this week without a pressing agenda. No baby grunting at me from the floor, no television in the background. The only sound I hear is the breathing from my husband, fallen asleep on the couch. Yes, we were up that early. And no, we still aren't getting much sleep around here.

So what's new?

Well, my girlie is officially a one-year-old. After all the build up the actual day was pretty mellow. That evening I started to complain to Nick that we didn't do enough for the actual birthday, when he reminded me of all the fun we did have: sleeping in snuggling and singing to one another, Daddy at home, swimming with the three of us, a day full of reading and smiling and eating and love. Then a happy-hour with some of our best friends at a great little place that is only kid-friendly in that there was an actual high-chair. Cora ate and played and snuggled until she got too tired. She rocked the gorgeous and elaborate headband that seemed to shout "Birthday!"

Thank you, Aunt Teenie for the beautiful headband!

Yes, she is chewing on the cocktail menu. What? It's her Birthday!

All day long, I kept waiting for the constant question... "How old is she?" For some reason, I am always proud to be able to tell her age, since I know that she looks a bit younger. I couldn't wait to say that "She is ONE TODAY!" So, of course, on that day alone nobody asked. I couldn't help it though... at the pool I told the little girl fawning all over Miss Beanie that it was her birthday.

We couldn't wait to weigh our Little Miss, who was feeling so heavy, and looking so absolutely rounder and fuller. So onto the scale she went, while we envisioned an 18 pounder, or at the very least, up quite a bit from her 11 month 16 pounds, 10 ounces. But do you want to know how much my big girl weighs? 16 pounds, 12 ounces. Yes folks, she's up a whole 2 ounces! So funny! I admit that I love that she's little. I love that I can still hold her for long periods, and that she still fits in her infant carseat and that she wears size 1 shoes. Oh, how I wish I could keep her this way longer.

Yet somehow she seems intent on doing some growing up. She's moving around now, although still a bit reluctantly at times. Yes, she'd prefer that I do most things for her, including feeding her, playing with her, and doing all hand gestures. If she had her way, I would move her around, hold her constantly and bring toys to her. So now we're letting her try and maneuver her own little self around. Poor Cora.

And her latest grown-up assertion of her autonomy is her grunting, groaning and yelling. She's a talkative little babbler, and has loved to yell for fun. But now she realizes she can grunt and yell to complain and she's taken to doing it pretty darn often. Especially yesterday. Oh, yesterday! Yeah, yesterday was frustrating. I'm not sure the best way to deal with it, but here's to hoping it's just a phase.

Today was much better. Two separate shopping errands gave us the opportunity for one of my favorite things to do with Cora these days: walk around with her in the shopping cart. She sits and beams huge silly grins at me the whole time, kicking her legs and talking away. I can't do anything without constantly laughing and talking to her. I'm sure it looks pretty silly, but she's been melting hearts all over town with her toothless smiles and sticky-uppy ponytail. Oh, that girl! She makes me just silly with love. And that's not even factoring in the laughter. You should hear the songs I've been making up as I bounce her around the house just to hear her sweet giggles.

Ok, enough on the gushing about how twitterpated I am with my girl. Think I'll upload a few pics and then head to bed early. (Hey, it's the only way I can even hope to get more than two hours of unbroken sleep!)

Thank you all for the lovely Birthday wishes.

They Say it's Her Birthday!

2012-01-13T08:09:00.000-08:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

Happy Birthday Eve to Me

2012-01-12T21:59:00.000-08:00

One year ago today I was coming to terms with the fact that I was in labor. I had spent the day in denial, at first arguing with Nick who wanted me to stay home from work, then timing my contractions on post-it notes at work. The midwives had just left after my urgently worked-in home visit, leaving the birthing tub "just in case." I was just starting to give in and focus on the self-hypnosis training I'd spent months practicing. And all the while I was envisioning myself holding this little person I was soon to see face to face. This little person that I'd already come to know so intimately as she wriggled and kicked and snuggled up inside. My little Cora was soon to arrive.

The birth was hard. Labor wasn't too bad, even with a night of back labor. The birthing tub, Nick's constant low-back massage and my hypnosis techniques kept me going, along with my visualization of myself with my baby girl. I focused on her name as I floated through contractions. And then when it was time to push, I growled out her name as I learned how to push. I guess you could say it took awhile to figure it out. She got stuck. Maybe it was her position. But for some reason, she got stuck for hours. After a total of 6 hours of pushing, an IV, some herbs and a discussion that our next step would be the hospital, she finally made it out with some vacuum assistance. At that moment I thought I'd never been so grateful to just have it over, that I think I forgot there was a baby. When they suddenly swung her up onto my stomach (OK, so it probably wasn't so dramatic, but at that moment it did seem like she was thrown on me) I was a little shocked. I'm sure most new mothers are to some degree. I was shocked and exhausted, and then surprised to see a little something different in those dark blinking eyes. Even now my first memory of her is like the little squid alien from Men in Black that blinks at Will Smith after he delivers it. That was how my baby looked. A blue turned pink little alien girl with blinky black eyes that were trying to tell me something.

I know now that those eyes were looking right at me, right into me. Those eyes were finally telling me what I'd been waiting so many months to see. The surprise then was painful. So painful. But thinking back on it now, I feel the happiness and the tenderness of my feelings. The pain has somehow blended into the love, making it feel so much more intense, so much more acute, so much a more powerful love than I ever expected.

Sometimes I wonder if I will love another child (if that is to be our future) the way I love Cora. Or even as much as I love Cora. This love is in part keenly protective, in part complete adoration, and full of utter ridiculous devotion. At this point I feel that I was given a gift to love her more, to aspire to help her on her path in life even more, to be her parent (as silly as that sounds) even that much more than I may have otherwise.

So tonight I am grateful. Grateful that I was given this gift, this girl. Grateful that with all that she's been through she's here to celebrate this milestone of a first birthday. Grateful that she's rocking this life and has influenced so many other lives already. Grateful for it all.

Wistful

2012-01-10T08:44:00.000-08:00

Photo by Shon Taylor

The weeks leading up to this big deal of a birthday have been fairly emotional for me.

Recently, while talking with my sisters about my reflections on my entrance into motherhood, I realized how much sadness and grief I still have about it. But not necessarily the grief you might think I mean. Yes, I did grieve when I learned that Cora has Down syndrome. But that grief was swiftly eclipsed by all the medical commotion that happened afterward and happily by my growing and all-consuming love.

I've discovered that the grief that I still hold onto is for all the fear and sadness surrounding those first several weeks: the fear of losing her mingled with sadness at not having been being able to appreciate her infancy without the risk of medical emergencies. As her first birthday draws near, I've been reliving my worst memories: the terror that we wouldn't make it to the hospital in time as she repeatedly turned blue, or watching as the cardiologist reviewed her tests and showed me a drawing of her heart defect. My own heart felt like it had stopped as I asked the doctor whether it could be fixed. I had to ask him to repeat his response, because my heart had decided to start pounding again right when he answered, and in my terror I could have sworn he had told me no.

I think back to that fear, to that moment of not knowing whether my baby would live or die, and all the doubts I'd had when she was born the day before: doubts about my ability to be her parent, to be proud of her, to love her with all my soul and to share her with the world, all of them seemed to vanish.

I guess I still mourn the loss of my imagined introduction to my daughter, sad that I bonded with her through her NICU bassinet and force-fed her through a syringe. Sad that I listened to the nurses who told me that I shouldn't hold her too much if I wanted her to grow enough to come home. I've been coming to terms with the fact that my first experience with the true unconditional and powerful love of a parent was also mingled with those fears and the resentment that I had to prove my ability to care for my child.

Maybe it's time to listen to my sisters and to let myself feel all the emotions that were swept under the rug in my effort to just get by and to take care of my girl. So I'm working on letting myself feel that pain and accepting this as part of who I am as a mother. I'm trying to let myself grieve without guilt, so I can continue to love without restraint. Happily, just acknowledging this is helping work out the kinks. And I imagine that time will continue to fade those scars.

Let the Birthday Celebrations Begin!

2012-01-08T18:38:00.000-08:00

We spent the last few days celebrating the Beanie's upcoming first birthday. With her big cousin Kai still on the west coast for a few more days, it was the perfect time to throw a joint birthday party for these adorable kiddos. Family came down from Canada and we even got to meet a brand new second cousin!

My sister Erin felted the babies some birthday crowns, which they proudly wore. They had cake and ice cream, (coconut ice cream for my food-sensitive girlie) opened presents, and enjoyed tons of attention.

"What? Is there something on my face?"

I almost posted the video of the Happy Birthday song, but then I realized how absolutely horrible it sounded. We discovered the day before while singing to a far-away aunt over the phone that our family's typical birthday singing made Cora cry. And it's not hard to understand why. Well, maybe it's hard unless you actually HEAR us sing Happy Birthday. You see, I come from a very musically challenged family. There are a few of us who can carry a tune (me included) but the rest... nope. But on birthdays, we hold nothing back. In fact, even if you CAN sing, it's expected that you will forget how and join in the cacophony. The lucky recipient gets to bask in the LOUD, off-key, off-rhythm shouted singing of the group of us.

I guess we just decided that it wasn't a good idea to make Cora cry during her own birthday celebration, so we toned it down and tried to sing nicely. At least that's what I thought until I listened to the video. Ouch... The babies are both just staring open-mouthed at the candles and looking around all confused, so it's not THAT entertaining anyway. Hmmm... maybe that is entertaining.

Cora LOVES Favorite Aunt Mira!

Mmm. The birthday wand seemed quite yummy.

Cora's awesome new hand-knit leg warmers, courtesy of Aunt Mira!

It was a blast to see how loved these two little members of our family have become in such a short amount of time. We all were wowed by Mr. Kai, who has during this visit, added a number of words to his vocabulary, started to take independent steps when he thinks nobody is looking, climb stairs, enjoy reading, and point to colors. The accomplishments this cutie makes daily are enough to startle and amaze this mama, who is used to a whole different and slower pace.

And we were no less impressed by Miss Cora, even though often her antics included simply sitting on the floor, waving her arms and smiling up a storm. But there is something so absolutely captivating about this girlie's smile. It doesn't take long for her to wrap even the non-baby-lovers around her pudgy little fingers. So then when she starts to do something truly exciting, the number of people standing around cheering are enough to make any mama proud. (I'll wait until the end of the post to share her newest milestone with you all.)

The birthday pair!

Cousin Kai rocking his B-day crown with Mommy!

More books for my favorite little book-loving girl!

Cora is awesome at opening presents!

And Cora's big news: She has started doing her own version of an army crawl! She started experimenting with moving around a little while ago, but it was pretty inconsistent, so I was hesitant to brag. But now she's full-on mobile, although it's still hard work and she has some interesting techniques! Here's the smile you can see after she reaches one of her favorite toys and is rewarded by a roomful of cheering. (Photo courtesy of Uncle Shon)

Stay tuned for more birthday related posting until the big day on Friday!

All in a Tizzy

2012-01-04T11:15:00.000-08:00

I've been having blog withdrawals. I think about blogging every day. I talk to myself in my head, composing ideas and paragraphs. But I keep getting interrupted. Maybe there is too much to think about, write about, post about. Or maybe not. And picking up the camera today I discovered I've barely turned it on since Christmas. (Sigh).

I've been getting excited and obsessed with year-end reflections now that we've rolled into 2012. And of course, my little Bean turns the big ONE next week, so that's been weighing on me. Despite wanting to plan celebrations, both big and small, I find myself thinking and not doing. Yes, we'll have an early 1st Birthday celebration this weekend for both Cora and Kai, which will end up being the "big to-do". I think we'll keep things quiet for the actual day and just celebrate with the three of us at home.

But oh the emotions I'm having these days about it all. So much pride, so much love, so much nostalgia. To top if all off, I finally bought the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. So much love and inspiration in there. So much that I feel could have come directly from my own heart.

I guess I'm in a bit of a tizzy. Where are all those partially written blog posts I've been composing when I need them?

I'll keep thinking and hoping that somehow I can transpose my feelings into words and save them here for my girl.

Favorite Photo Friday: My Cutie Girl

2011-12-30T08:21:00.000-08:00

In keeping with my recent tendency for few words, I'd like to share some of my favorite photos from a photo shoot with Owls Eye Photography in October. Although it was difficult, I kept them (mostly) under wraps until Christmas. Here are my favorites. With a subject this cute, it's not hard to see why.

A Very Beanie Christmas

2011-12-27T19:14:00.000-08:00

Whew. The season of excess and merriment has somehow come to a close. After leaving computers turned off, letting phones die without recharging and not touching the t.v. remote for several days, I am back to the land of the plugged in.

And oh, what a Christmas it was. Cora was a true party animal, loving up all the attention of her grandparents, aunts, uncles and little cousin. She played with paper and ornaments, got excited over new toys, blissed out in the hot tub, played dress up and had a ball. We ate way too much, cooked and cleaned for days, spent the whole time on "holiday schedule" and laughed harder than I have in ages.

There are some thoughts a-brewing and I'll post some of them soon, but for now, I want to just get some of the adorable cuteness out there.

Cora loving on her cousin Kai. He is quite the inspiration for her with all his moving around.

These cousins got seriously spoiled for their first Christmas.

But with all the loving silliness they gifted us all, it was well worth it.

One of my favorite plaid wearing families: Eri, Jon and Kai,

celebrating their first Christmas as a family of three.

And of course, I have to include my little Beanie girl on Christmas morning,

rocking her bedhead and mismatched headband with her polka dotted jammies, courtesy of the Christmas Faerie (who delivers new pajamas to all on Christmas Eve.)

One of her awesome fancy new gifts came from Favorite Auntie Erin, who gave her a selection of multi-colored silk scarves for play. In my family, this means dress up AND peekaboo!

Check out Cora's lovely fashion statement.
(Plus a bonus demonstration of her ridiculous flexibility- Thank you ligamentous laxity!)

No holiday is complete without Santa's Elves. Well, check out these little sweetie elves in their coordinated re-purposed sweater outfits, again, courtesy of Auntie Eri.

And, just for good measure, a glimpse of my beautiful nephew, Kai.

And one of my sassy little girl, giving the camera the eye while playing on my lap.

Yes, it was a holiday to remember. Love to all my family that made it great. Now just getting ready for the New Year and some first birthday celebrations.

Slacker

2011-12-20T15:29:00.000-08:00

OK, so I'm not actually a slacker. I am a busy mommy working part-time from home on less than ideal sleep, doing last-minute Christmas shopping and prepping and planning, and attending Christmas gatherings and parties. So I've been kind of quiet on the blogging front, still.

I realized today that I haven't even snapped a picture of Cora in several days. Wow. I'm currently wrapping up the week and getting ready to head out of town tomorrow for my parents house, where I'll get to hunker down and celebrate Christmas properly, with holiday schedule (our code for putting something sinful in your coffee OR starting your day with a mimosa OR anything indulgent that can be safely explained by the holidays). I'll be trying to get snuggles from my nephew Kai in between his efforts to learn to walk. I'll be sitting in the hot-tub with my girlie (turned, of course, to a baby-appropriate temperature with Little Miss in a swim diaper to avoid any mishaps). I'll be taking my husband out to a movie for his birthday, which will be an exciting "first this year" kind of event.

So with all that, I can't really guarantee how much I'll be posting. Hopefully I'll be taking lots of pictures and feeling inspired. If not, then please forgive me.

In the meantime, my slacker self will post these adorable Santa pics. Yes, those of you on Facebook have already seen them, but for the rest of my blogger friends and for appropriate chronicling of Cora's first Christmas, I present: The Little Beanie Girl with her first ever Santa. And isn't he a jolly Santa Claus at that? I am very impressed with the Northwest Down Syndrome Association Santa pics this year. Very impressed, indeed.

Season's Greetings

2011-12-17T10:12:00.000-08:00

Merry Christmas to all my bloggy friends. A little taste of our first family Christmas card.

Photo Friday

2011-12-16T08:30:00.000-08:00

Another Year

2011-12-15T10:33:00.000-08:00

Today I turn 34. Ah, birthdays...

As a child, I would make myself sick with excitement in the weeks leading up to my birthday. I'd count down the days and the months with anticipation of something fantastical. But, not surprisingly, that fantasy always left me hanging. Every year I'd face disappointment and tears. Because it could never live up to my crazy unfounded ideas about what my birthday should be. Over the years I tried to scale back my expectations, but for some reason even that tended to jinx things for me. No matter how modest the plans there has almost always been some level of disappointment. Kind of embarrassing, really. Always plotting a rush, as my father-in-law would say.

This year the plans are modest again, but already seem like they'll be much more fun. (Wait, is that me with too many expectations again?) To start with, instead of trudging to the office I woke with the cutest little girl I've ever seen, snuggled into her soft little self and kissed her delectable cheeks. After brewing my coffee and adding a little "holiday schedule" for proper merriment, I sat down to an elegant breakfast of Cheerios (for me and Beanie) and spoon-fed coconut yogurt into the silliest little face while she spat it back at me.

My best friend Christine will be over soon to share the day playing with Cora, making lunch and just having some girl time. Then tonight when Nick comes home, we'll snack on some of our favorite things (baguette, St. Andre cheese and olives) and head to Portland's Candy Cane Lane, picking up Thai food on the way home. Sounds downright lovely. Are my expectations too high? Am I bound to shoot myself in the foot and go to bed hating my birthday yet again, my silly pre-school ideas once again put to rest? I guess we'll see.

But for now, I'm going to clean the yogurt off a pretty little face and get ready to enjoy the one thing that has brought me more joy than I'd ever thought possible: my little girlie girl. What a lucky, lucky mumma am I.

11 months old

2011-12-13T11:01:00.000-08:00

My baby is growing up... (sniff, sniff!)

I have an almost one-year old. It's just shocking, really. And she is getting bigger. After almost 2 months of staying at the same weight, she's been starting to look a little doughy of late. The cheeks are bigger, the chin hangs down, and her little Michelin man arms are getting rounder. And the scale this morning said.... 16 lb 10 oz!

I spent a few minutes browsing online yesterday, which I seldom do anymore, since I am obsessed with blogs and trying to get work done. But instead I read a an article that says that working moms are happier and healthier than SAHMs. For some reason that just seems a little bit hard to believe. It talks about how isolated and depressing being a SAHM is. And it got me wondering whether this is really true for the majority of people, let alone for me.

I do agree that being a SAHM is a lot of work. And hard work, despite the fact that it's not physically grueling or remarkably intellectually exhausting. We don't get weekends and evenings off, of course, and since Miss Cora wakes up often and for prolonged periods throughout the night, I do too. I get a little antsy for big people conversation here and there, and get tired of finding different ways to run through my list of Cora's therapies and developmental games. But am I more depressed?

At my beautiful friend's Christmas party the other day, she remarked that I seem in a better mood and happier in general since Cora has arrived. She's also said that Nick and I seem happier as a couple, too. And that put a big smile on my face. Even with the very little sleep and the extra stress that having a child "with special needs" is supposed to put on my life, one of the people who knows me best thinks I am happier. And that makes me happy.

When I look at it, I am happier, though tired and often stressed. Even though I fantasize about going to a movie sometimes, or getting to read in the middle of the day and ignoring the house and home for a while, I really am thrilled being Cora's stay at home mama. To get to spend my days with the most amazing little person in the world really is the best job I can think of.

I leave you with an image from yesterday's fun activity. Well, fun for me at least. Cora tolerated it fairly well. I think it may be a little premature to be experimenting with pigtails. Granted, her hair is growing, but there's still not a heck of a lot to work with.


Mummy's big girl!

Whirlwind Update

2011-12-09T14:54:00.000-08:00

A week has passed with me essentially missing in action on the blog front. Not for lack of adventures, but for lack of time. So here's a bit of an update.

During this time, Miss Cora has had two doctor's visits, which is a record number since her recovery from heart surgery. The visit to the audiologist was somewhat inconclusive. There is likely a small amount of fluid, and perhaps some mild hearing loss in the lower register. It's apparently hard to tell, both because her ear canals are so small that it makes some of the testing inconclusive, and also because she's still young enough that a lack of response to auditory stimulation could be either the result of hearing loss or just loss of interest. Who knows? The audiologist told us it's probably not a concern for now. We'll be going back in two months. We know Cora can hear and she usually responds to sound, but sometimes she seems to choose to ignore my verbal attempts to get her attention.

We also went to the ophthalmologist, who says she's doing great. She's still a bit farsighted, which is typical for babies of this age. But her eyes work together well, her vision is the same in both eyes, and her nystagmus has dramatically improved. Yay, Cora!

This week I had a little extra work on my plate, and my mom and sister came into town so that Nick and I could spend an evening out on the town for our birthdays (which are later this month). It was the first time he and I have gone out together without Cora since she arrived, if you don't count going to and from the hospital in the early days (which I certainly don't). Cora had tons of fun with her favorite Grammie and Auntie Mira, while Nick and I sipped adult beverages and got to see an acapella group sing.

We also went Christmas shopping without buying anything, visited some great Portland eating establishments, and got to see Santa and some other cuties at the Northwest Down Syndrome Association Winter Social. (I'm hoping to get the Santa pics in the mail any day now).


Cora definitely wants our pretty drinks.

This weekend we've got a cookie swap and two holiday potluck parties. It's that time of year, for sure!

Little Beanie seems to love this time of year. She has already shared one of my own favorite Christmas activities: lying underneath the tree.

And of course, you already saw the fruits of our Christmas coloring adventure. She's loving on the Christmas music (she's fond of "Rudolph the Red-Nosed Reindeer"), but I think she especially likes her silly Mumma dancing around the house singing to her.

She has, to my selfish joy, started to choose me over most other people, places and things. Daddy is still great, of course, but she's starting to reach for Mumma whenever I'm in sight. No matter what kind of entertainment is going on, she seems to always save the best and most brilliant smiles for me. And it makes me SO happy. This little girl inexplicably seems to get cuter, funnier and more lovable on a daily basis. (Even while continuing to keep us up every night).

Hopefully I will keep the posting up this month, in the midst of all the fun and bustle. In the meantime, here are a few of my favorite silly girlie pics from the last few days.

A Good Cry

2011-12-02T21:35:00.000-08:00

A few days ago, driving in my car, switching radio stations to find songs that suit my mood, I heard a woman on the radio give her story of the day. I'd heard her stories a few times before. Always a little sappy, a little sweet, a little heartwarming. Sometimes you'd roll your eyes just a little.

She started telling a story of a little boy at a pet store looking at puppies. When the boy saw a puppy with a limp, he told the shopkeeper he wanted to buy that puppy. The shopkeeper tried to talk the boy out of it, and when the boy insisted, he then tried to give the puppy away free. But the boy wouldn't hear of it and insisted on paying full price. The man went on to tell the boy that the puppy would never learn to run and jump and play. Then the boy revealed the brace on his own leg. He told the man that he didn't run so well himself, and that the puppy would need someone to keep him company and love him as he is. The woman on the radio went on to talk about recognizing value in people, things and animals that may not seem, at first glance, to be perfect. (Her version was scripted much better than my own.)

And even though I wanted to roll my eyes, I found myself crying.

...crying because I so want my daughter to be recognized as valuable. And I know that it may be an uphill struggle. I know that many people wouldn't have chosen a child not viewed as perfect, and that ultimately, with modern prenatal testing, more and more people will be getting the opportunity to make that choice. And they'll likely be making that choice based on fear, without the benefit of witnessing the beauty, joy, love and value that can exist in that child. At that moment, alone in my car, the thought was so raw and so painful.

I turned off the radio and cried.

And then strangely, my emotions shifted, and out of nowhere I was struck with a glimmer of my initial grief: the grief that tore through me when Cora was born, but that I didn't allow to stay. Shocked, but unable to hold it back, I let myself cry, all the while feeling like I was somehow betraying my girl. Through my tears I questioned how I could be feeling grief over something I love so deeply. If I feel sadness, how can I expect others not to fear what I have, or not to have pity, let alone to recognize what a gift my daughter is? How could I reconcile this startling sadness with the overwhelming love I have for this child that I would walk through fire to choose again and again?

A few moments later a sense of peace came over me and I was struck with gratitude. Gratitude of course, for my beautiful girl and for the pure joy that she brings to my life. Grateful also that I was smart enough and humble enough to recognize something good when I delivered her on my living room floor.

But grateful too, for that small moment of sadness that I shared with myself alone at a stop light: for allowing my defenses to bend for an instant, to let in my own worries and fear and sadness, still recognizing that it doesn't negate my love. It doesn't counteract my fierce desire to protect Cora or to share her beauty with the world. It is just a small part of me now. Maybe a part that I didn't know was still lingering. But it's a part I can accept for a little while at least, knowing that it'll get smaller every day, as it's eclipsed by my daughter's smile.

Now THIS is pure joy!

The Colors of Christmas

2011-12-01T19:27:00.000-08:00

As an adult I've developed a Christmas tradition that I love. Coloring. With crayons. In a coloring book.

Years ago, I spent the holiday season with a wonderful friend, who shared this tradition with me. Each year she would buy a Christmas coloring book and a jumbo box of crayons. And she would try to complete the entire coloring book that season.

Well, I have not been nearly so successful. This could be because I bought a Jumbo Coloring Book. But this is the 11th year with my Christmas coloring book. It lives in a box I created, covered in Christmas fabric and complete with a two BIG bags of crayons. Each year I pull it out and color. And I invite all my friends and family to color, as well.

Coloring is therapeutic. Coloring inside or outside the lines, using traditional colors or making Santa bright pink; and even making Santa a little cheeky or inappropriate... it's all fair game.

Well this year I was extremely excited to introduce the Bean to the world of Christmas coloring. And you know what? It went over pretty well, I must say.

Of course, she loved the big ziploc bag that the crayons came in. And of course, pouring all the crayons all around her happened right away.

Then she got to touch the crayons. New and fun and colorful! Wow!

But I don't think anyone prepared her for just how yummy crayons would be.

And the coloring book itself... awesome! Pages to turn and crumple! Lots of colors already there! What great fun!

I even let her color her own page. Of course, it was assisted coloring. I'm not sure if she realized the crayon she was holding was making marks as I helped her move her hand. She was more interested in putting them in her mouth. But still... I now give you Cora's first ever work of art. And in my own Christmas coloring book.

Now I feel like it's really and truly Christmas. And once I'm done with this post, I'll color my own first picture of the year.

I wonder if we'll ever finish this coloring book. But either way, it's a tradition that I love and adore. And I'm excited to share it with my girlie.

Snuggled in Round the Christmas Tree

2011-11-27T15:50:00.000-08:00

The family rolled out of town yesterday, leaving the three of us to enjoy the gorgeous day. Excited to be able to get outside without major rain gear, we decided to start the first of our Christmas traditions as a family of three.

This is the ninth Christmas that Nick and I have shared together and the third since we've been married. Although both of our families growing up waited until December got going to start celebrating Christmas, he and I like to get it going early. Especially since we have seldom spent the holidays at our own place. But we usually head to a lot to get a pre-cut tree. Not this year. We decided to go on a drive out of town to a tree farm to cut our own tree.

Our little outdoor enthusiast was certainly up to the challenge.

After some walking around we found our perfect tree. A "natural" noble, not too full or bushy, but not quite a "Charlie Brown" tree either, I'd say it's our best tree yet. And my own handy man cut it down himself by hand, despite the guy with the chainsaw at the ready.

After carrying the tree back, we stopped at the farm house to enjoy a cup of cider and make some Christmas ornaments for Cora.

Yes, classy, I know.

Luckily I am a fan of trees decked with multicolored lights and an eclectic selection of ornaments.

Today our rainy Northwest weather is again beating against the windows, and we are snugged in from the damp, listening to the "Baby it's Cold Outside" station on Pandora, cleaning up the last of the messes from the holiday, dealing with leftovers and decorating the house.

A little wistful that the weekend is ending and that we'll be starting up our routines again tomorrow. But warm and happy and ready to start celebrating Cora's first Christmas season.

Turkey, Turkey

2011-11-25T11:07:00.000-08:00

The bread-winner... I mean bread-maker in the family.

Auntie Tara is so much fun!

Who knew hair could be this fun to play with! Cora loves Auntie Ariel!

Thanksgiving snacking at its best.

Family and friends gathered round.

Cora's first turkey, and first meat. She started with small pieces, then played with the drumstick.

Thankful

2011-11-23T07:35:00.000-08:00

If you haven't seen this lovely Thanksgiving compilation post by Patti at A Perfect Lily, please go check it out.

Thankful for YOU

If you've ever wondered what kind of perspective having a child with Down syndrome can give to people, here's your sneak peak.

(You'll even catch a first-time viewing of us in one of our top secret Christmas photos...)

Go check out Lilybird's blog for one of Cora's favorite posts.

My Goofball

2011-11-21T20:13:00.000-08:00

So I've been slacking a bit in the blogging department of late. The funny thing is, I've been having so many thoughts running through my head, but have been a little too absorbed in the day-to-day to delve into anything.

Scrolling through the recent pics of Miss Beanie Girl, I've noticed that she's been a little bit of a Silly Goose.

In fact, I don't have many traditionally cute pictures of her at all. What I have a lot of, is her making crazy, goofy, excited faces.

Next we have what I call her "Hailey" face, after this lovely little cutie that I like to read about. (Obviously, Miss Hailey did it first.) Her mama talks about her camera face, which you can see here. This is Cora's version.

And lest we forget about the cute and sweet...

Mama's Night Out

2011-11-17T07:42:00.000-08:00

Tonight I had a much needed night out. This is the third evening I've stepped away from my girl since she arrived. The first was many months ago for a quick happy hour with some other new mamas, and the other out for a movie with my family while Nick stayed at home.

This evening was another mama's happy hour. The restaurant was dark and loud and full of people, all of whom looked childless. But that was probably because there were no kids out. The food was great, although it took forever. I guess you could say that the whole thing felt like the pre-baby days, in a way. It seemed like a world apart from my typical reality.

The conversation touched on family, life changes, raising babies and transitioning into motherhood. I met one of the mamas when we were both pregnant, due just two weeks apart. We'd get together with a handful of other ladies for mocktails and brunches, prenatal swim classes and long conversations about something we really knew nothing about: becoming mothers. The other two ladies have since joined our group, each of them with two small children at home getting snuggled into bed by their daddies. We certainly had enough to talk about to keep the conversation flowing.

We reflected on how different our lives were a year ago. How different our lives are than what we expected. How much harder it really is than what we expected.

Although this may sound silly, I really like hearing that from other new moms, especially new moms whose children don't have Down syndrome. It's nice to see how similar we really are. Sure, I know there are some differences. Our challenges may be a little different, but we are all challenged. And it's nice to recognize that.

But I think the most poignant moment occurred as I was walking to my car. Parked a few blocks away, I was excited to pop open my umbrella and make my way through the wind and the leaves plastered to the sidewalk as I walked under the streetlights. Feeling a thrill of what I can only really call freedom, it was a moment where I felt so definitively "me." That old friend, that "pre-baby me" was so independent. She thrived on having time alone, on walking down the street with her arms swinging, purpose in her step. And I felt that me as I walked down the street tonight. I felt the me not weighted down by a diaper bag, not slowed down by buckling a baby in the car seat and folding the stroller into the trunk. I felt that little lightning thrill of just walking down the street as myself, after having dinner with the girls, high on my escape from the responsibilities at home, if only for a couple short hours. Exhausted as I was from the events of the day and my ongoing sleep deprivation, I let myself enjoy that moment of feeling so singularly like myself.

But the other part of me got excited turning the key in the car. As I drove down the street I imagined the little almost 16 pound bundle of sweetness tucked into her bed. As I envisioned kissing those sweet little cheeks I started to smile.

And I was able to recognize me for the self that I am now. Still me. Still enjoying a few moments of independence. But still excited to get back home to my girl. Me as a Mom. I like it.

That's What It's All About

2011-11-15T14:21:00.000-08:00

The days are flying by. The months too. Cora turned 10 months old on Sunday and I can hardly believe it.

We've been busy with friends, appointments, naps and never-ending stuff. Things are a little delirious around here lately. We're still working on trying to get more sleep and are going to be exploring some medical reasons why Miss Cora is having such frequent night wakings. We're going to check stuff out with the audiologist and ENT, maybe get a sleep study done, and go to a pediatric chiropractor who specializes in craniosacral and nutrition. Cora's current chiropractor thinks it may be digestive, so we'll try and explore that. But we have been blessed with longer naps in the last few days, so I am keeping my fingers crossed that it continues.

My 10 month old girl has been a little joy lately. It's like her skills are exploding right now. Still somewhat reluctant to do much in the way of moving, she is now tolerating kneeling, and is doing better at moving herself down the crawling track. We're working on upper body strength right now, since it seems a little lacking. Last night she got majorly squirmy and for the first time tried to throw herself off my lap headfirst onto the hardwood floor. She almost succeeded, but my reflexes kicked in right in the nick of time.

She's been doing some fun new things, like playing Peekaboo with a blanket (over her head and my head), using my finger to point to objects in her books, and sharing her toys with me (Last night she repeatedly put Sophie the Giraffe in my mouth, since thoughtful girl that she is, she thought that I would also want to chew on Sophie's legs).

She really is the sweetest girl ever, content to cuddle up in my arms and sweetly and softly sing to me with a brilliant gummy grin. And she often mixes it up and shows us both just how loud she can yell. Yet even that is sweet, since she gets so excited.

We're happy. A little stressed and still quite sleep deprived, but happy. We're excited to be planning for Nick's family to come here over Thanksgiving, and I've been busying myself with making lists and starting prepping in advance.

Happy. And tired. That's what it's all about.


Foaming at the mouth. Literally. Life is just too darn exciting!

Tolerating having her knees tucked under her. Big accomplishment. Now would somebody just put her to bed?

Pool Party and A Giveaway Winner

2011-11-11T08:00:00.000-08:00

The pool is always party time for Miss Cora, so we go frequently. It's a great place to get her to move in ways that she's reluctant to do on dry ground. And she just has a ball. We finally managed to bring the camera (and Nick) to capture her glee.

And the winner of the Ornament Giveaway, randomly picked out of a hat, is Laura from right here in Portland. Laura, I'll be in touch with you to get the details for your ornament! Thanks to all who commented and entered for my first giveaway. I'll be having another giveaway soon!

So Big! Loving the Little Milestones.

2011-11-10T13:57:00.000-08:00

This little girlie is impressing me daily. I know, no big surprise there, right?

You want to know what she just started doing? She's playing "So big!" Now, it's modified, since she only wants to clap and play with my hands rather than hers. Yesterday when I asked "How big is Cora?" she grabbed my hands and lifted them up in the air. And she's done it consistently since then.

Also, today she took my hands but was trying something different, pushing them together oddly and looking at me expectantly. It was then that I realized she wanted me to sing "Itsy Bitsy Spider." I then proceeded to have to sing it about 10 times, until I tuckered out and put her down for a nap. I've also noticed that she is now responding when I ask her (verbally and with a sign) if she wants milk.

Now those of you with kids who are neurotypical may just think that's no big deal, that she should be doing those things at just short of 10 months old.

But the big deal of it is that until now I had no idea whether she was processing language or understanding me. And that nagging little worry has been sneaking its way into my life. So she takes longer to crawl and walk? That's fine by me, since she'll get there and I know that. But the unknown is how she'll do cognitively. We can expect a mild to moderate cognitive disability but for now it's still an unknown. And that unknown stings a little, especially now that she is old enough that her delays in cognitive development are starting to show.

I had been getting a little worried about whether she was understanding spoken words. She doesn't really mimic things that we say or sounds that we make, but she will mimic gross motor (for example: if I splash in the bath or hit a pan with a spoon she will copy me.) This gross motor mimicking is really important too, since it's a precursor to speech. Children with Ds may not be ready to make sounds or mimic verbally but by having this kind of gross motor "conversation" we have the opportunity to take turns and to repeat one another. It's like having a pre-verbal conversation and is a really important part of Cora's development.

But now I suddenly have a baby that seems to understand! I know that kids with Ds usually understand much before they can verbally express (or even express with signs). But I also know that we're working with a different kind of cognition, one that isn't likely to be as strong with auditory input, and one that may have difficulty with certain kinds of memory. The fact that she can remember "So Big!" without me showing her shows that she is understanding and retaining that comprehension.

Of course I don't know whether she understands the concept of big yet. But I do know that when she hears those words, she knows the appropriate physical response. And that is huge.

So I'm a little over the moon right now. Happy that she is progressing and that she can demonstrate that to me.

It's intense, this whole process. I always heard how extraordinary milestones are for the parents of children with Ds, simply because our children work so very hard to achieve them. And because we wait ever so patiently (or not so patiently) for these same milestones. So even the little ones seem huge. If you have a child with Ds I'm sure you can understand this. And if you don't, maybe it'll give you a little something to think about as you watch your own neurotypical kiddos develop and fly through milestones.

But today, I am proud of my little girl. My so big, little girl.

Of Mended Hearts

2011-11-09T16:41:00.000-08:00

This time of year it is natural to reflect on the things we are thankful for.

And today, I got to do just that with a visit to Cora's cardiologist. She was last seen 6 months ago and had her heart surgery 7 months ago already. Her doctor confirmed what he said the last time we saw him: that her repair is ideal and that she looks wonderful. We don't go back for a year, and then probably every 5 years or so beyond that.

Quite the amazing transformation from the little pale baby who could barely eat or breathe.

And I am so so grateful to her cardiologist and to her incredible surgeon, and to everyone else who has cared for our girl.

I am also happy to report that Miss McKenzie, who had her own open heart surgery yesterday, is doing well. Her mother says that everything went very well with no complications, and that she is wiggling around today. Thank you for your thoughts and prayers for this little sweetie. Now we just hope that she continues to heal and recover with no significant hurdles along the way so that she and her family can head home soon.

No new cute pics since yesterday, due to our super busy day, so how about an oldie but cutie? This one's from 4 month old Cora, just about 6 weeks after her surgery. What a pretty girl...

And if you missed yesterday's post, you can still go there to leave a comment and be entered to win a super-cute customized Christmas ornament. The winner will be announced on Friday.

Ornament Giveaway

2011-11-08T15:01:00.000-08:00

I've been watching some great blog giveaways for months. Miss Cora even won some adorable little barrettes from a giveaway at A Perfect Lily.

So I figure it's time for me to post a giveaway. And since we're coming up on the holidays... how about an ornament, customized for your family?

My beautiful friend Christine has a lovely Etsy shop, This Fine Day, which specializes in handmade wooden pieces for weddings. She mixes it up a little come Christmas-time and last year surprised us with this beautiful little piece, as we waited for Miss Cora's arrival.

Mommy To Be Ornament

So I was thinking that maybe one of you would like a similar ornament. Whether you're expecting, have a new baby, or a small family (I imagine it may be challenging to create one with a LOT of kids, but I wouldn't put it past her...)

Wouldn't this be a sweet addition to your tree this year? You can choose any of the ornaments from her shop. She will customize with the year and your family or baby's name on the back. Like "Cora's First Christmas 2011," for example.

Baby's First Christmas

Preview

And for those who want to place an order in time for the holidays, she's willing to give 20% off orders, if you apply the shop coupon code "corabean" in your order. And if you prefer jewelry gifts, check our her jewelry shop, Teenie Birdie.

To enter, leave a comment on today's post. I'll announce the winner this Friday.

And just for the cute of it, a little bit of the Bean for your viewing pleasure...


"Ha! Ha! I tricked Daddy into taking me off my tummy!"

"Wait! Where is that Daddy? Is he hiding behind the camera?"

"Woo hoo! This is way more fun than working out on the crawling track."

"Hey Daddy! I've got YOU figured out!"

Prayers for McKenzie

2011-11-07T07:38:00.000-08:00

I started this blog as a way to connect Cora to friends and family that aren't as lucky as I am to see her every day. And I also hoped to one day be a support to other parents of children with Ds as they go through some of the experiences we've had. I am blessed to have already been contacted by other parents and am happy that I can be a source of support, even though our own journey into this is still relatively new.

I have recently been in touch with Margaret, mother to her beautiful surprise, 7 month old McKenzie Faith. She is loved and adored by her mother, three older brothers, Will, Matt and Andrew and by her 3-year old nephew and 2 sisters-in-law. Her family has just made the 5 hour trip to the hospital in New Mexico for her repair.

Today McKenzie is in pre-op and tomorrow she will have surgery to repair an AVSD (or AV canal) heart defect.

Please send her family your thoughts and prayers as they wait for their baby to go through this life-changing and much-needed surgery. Having been there ourselves 7 months ago, support and thoughts from the world outside are so helpful. Please pray for McKenzie's surgeon to do a quick and thorough repair, and for her recovery to be full and speedy.

We're thinking of you McKenzie.

Being a Canadian

2011-11-04T21:25:00.000-07:00

OK. So I've commandeered my mum's blog again, but I don't have much time before she figures it out. You'd rather hear from me anyway, right? (This is Cora, if you haven't figured it out.)

So yesterday I learned that I'm Canadian. I don't really know what that means.

But being Canadian sounds pretty cool. I guess I can handle that.

What does a Canadian do? Eat poutine? Eat crepes? Chase moose? Or meese? Owls are Canadian, right? Here's me in a Canadian shirt....

Being Canadian Rocks!

The Guilty Canadian

2011-11-03T17:06:00.000-07:00

I just discovered yesterday that it is Canadian Down Syndrome Awareness Week.

Even if I had known at the beginning of the week, I already missed doing a daily post by missing Tuesday. I admit I felt a little off-kilter not writing, even though I know I was looking forward to the blogging break after the 31 for 21 challenge.

I think I am feeling a little guilty about not being part of the Canadian challenge, since I am 3/4 Canadian. At least I think that's right. My mum is Canadian and my dad is half Canadian. Yeah, 3/4, that's right. Does it make me any more Canadian that I was actually born in Canada too? And what does that make the Beanie girl? 3/8 Canadian? Not sure that my high school math skills are up to thinking about fractions right now.

The Canadian in me comes out when I say "mum" instead of "mom" and say "eh" at the ends of my sentences. But even though I was born in Canada, I've spent 26 of my almost 34 years in the States. When in Canada people call me American. And here I get called Canadian.

Some of my favorites things about Canada are all the family members we have who live there. Why, Miss Cora has even been there twice already. So I guess in that respect we've already been contributing to Ds awareness.

So hello out there to my fellow Canadians! This 3/4 Canadian and her 3/8 Canadian little Bean want to promote awareness for Down syndrome. Even if we don't blog every day for the rest of the week...

"Hey Mum! Do prunes promote awareness?"

Sweet and Sour

2011-11-02T19:24:00.000-07:00

Sweet little Cora. Always such an angel with her pretty little face.

Except when she's not.

I know it looks like she's practicing her ogre-face, just a little late for Halloween. But really, she's just amping it up in the "making faces while excited" department. I'm not sure how much more exciting things can get.

31 for 21- Day 31: Ta-da!!!

2011-10-31T14:30:00.000-07:00

This is it... the final post for the 31 for 21 challenge.

Have you learned anything new about Down syndrome this month?

Checked out any new blogs?

Fell in love with the adorable faces of any cuties sporting designer genes?

I know I have.

This has been a great challenge for me and I hope I've lived up to it well. Not all of my posts this month have been about Ds, as you will notice. And that's just because our lives don't revolve around Ds. But we are affected by it, in a powerful and often wonderful way.

Most of all we are affected by the crazy love we have for this silly little girl who's become the center of our lives. And we are so happy for all that she's brought us, including new awareness, new friends and a new focus on life.

I may take a little breather after posting daily for the last few weeks, but I think I've become inspired to step it up a bit. So you may just be seeing a little more of me (and of cute little Cora too). And thank you to all the other parents participating in 31 for 21 this month. You inspire me, make me laugh and make me cry.

For my readers who may not have checked out many of the other blogs I follow, you can find their links in my sidebar. I seem to be adding more all the time.

And if you want to contribute to promoting awareness for Down syndrome, please share this blog or others with your friends and family. Goodness knows that the more real, accurate and true-to-life information that is shared, the better informed people will be about the kind of blessing a child with Ds can be. It may not be a perfect life, but it is a life worth living.

Happy Halloween. Have fun with your little (and big) trick-or-treaters tonight. Thank you for reading. It means so much to me.

31 for 21- Day 30: A Scary Day

2011-10-30T18:25:00.000-07:00

Hi everyone. Cora here.

Mum is pretty tired, so I thought I'd write today's post, even though I'm still a little mad at her.

Today she took me to a very scary place. First she put this outfit on me. For some reason she took lots of pictures. I don't know what the big deal is. But she takes a LOT of pictures of me. At first everything seemed OK.

Then she put on these weird clothes. It was fun to touch her hair and the balls on her shirt, but she looked pretty strange. I wasn't too sure about it at first but then I realized it was just Mum even though she looked different.

After that, things got pretty bad. She took me to this place with a whole bunch of people and lots of babies in weird clothes. There were some good toys, so I played for a bit. But everybody came to say hi to me and that was kind of scary. I'm not sure why Mum wasn't scared too.

Then she put me on the couch next to some other really scary babies and a whole bunch of people tried to take our pictures. Luckily I screamed and cried enough that Mum picked me up and took me home before she got pictures with all the other babies.

Anyway, once we got in the car things were fine. Now we're home with Daddy, although he's playing with worms outside. I can't wait for him to come in and play with me.

Mum says to say Happy Halloween.

31 for 21- Day 29: Fountains and Fries

2011-10-29T18:27:00.000-07:00

The day is winding down and we're all a bit exhausted. Up visiting my parents for the weekend, we decided to take an afternoon trip to the Seattle Center for some food and fun.

The food carts were out in force, which would have made it feel like Portland, if not for the distinctly Seattle-esque scenery.

We sampled some yummy foods: pulled pork, Vietnamese sandwiches and some gourmet burgers. Then we sat by the fountain, where we were thoroughly entertained for the rest of the afternoon. That fountain is crazy and erratic and strong and will get you if you think you're smarter than it is. We watched a lot of people try their luck against the fountain and get wet, including a kid in a full winter jacket and a dad with a baby. But you ask for it... you get it.

After sitting and watching for a while, with the Beanie Girl wavering between being mesmerized and hooting and hollering with the rest of the crowd, her Daddy took her down a little closer... but not too close. They ended up staying dry. She sat down just at the water's edge with Grandpa for a while too. She almost completely missed her afternoon nap.

And she may have gone on a hunger strike with all the excitement... until Grammie tempted her with her first french fry. Yes, health food for a 9 month old. Grammie peeled off the fried part and gave her the inner potato mush. And it was a complete hit. Her first potato.

"Hmm... this tastes a little funny Mum."

"Well, maybe it's not so bad..."

All in all, a wonderful beautiful crisp clear day in Seattle with wonderful company and a blissfully happy little girlie. What more could we ask for?

Now we're getting ready for a dinner of fried green tomatoes, salad and some chocolate malteds for dessert. While sipping on some of my dad's homebrewed beer.

What a lovely Saturday!

31 for 21- Day 28: Working Out

2011-10-28T12:55:00.000-07:00

My little girlie works her butt off on a regular basis. With most babies this is probably the case. The difference with Cora is that due to the challenges that Ds puts in her path, we have to project a little more purpose into her play and a little more guidance into her struggles to move around.

At this point I'm pretty sure that Cora is NOT motor-driven. Case in point: the fact that even though she CAN roll both ways she often chooses not to. She'll just lie there and whine until I eventually change her position. She can pivot, but won't when I'm watching. She can inch forward on the crawling track but hollers with every centimeter. For the life of me I can't figure out where she got this stubborn streak. (Sarcasm, anyone?)

Trying to encourage her to crawl? So far, not easy. How the world do I motivate this child? She absolutely hates having her legs bent and underneath her. She needs to develop the strength to do this, so we're working with her on an assisted quadruped (getting on hands and knees) and kneeling, but our efforts are more often than not met with shouts and straightened hard-as-steel legs. We're also trying to get her to put more weight on her arms, which she also hates to do. So crawling may be a ways off. In the meantime, we've built her a crawling track for practice, which has many benefits, but more on that later.

Happy at first. That is, until she realized that this is a torture device...

I'm enjoying learning about the stages of development, the skills she should accomplish before moving onto the next step, and how to try to avoid negative postures and patterns.

The challenge is delivering these "therapies" in bursts throughout the day as play. Gross motor and fine motor and speech and communication and cognition. Sign language and reading and singing. Luckily she loves communication play: talking, singing and reading. Hmmm... she sounds kind of like me. Maybe she did get that extra chromosome from my side after all.

Learning about all of this is time consuming right now. Playing with Cora takes time. But I guess that's why I get to spend my days with her. I think I may just need better organization: A list of the things we are currently working on so that I can incorporate them in our days. I need to start better documentation so I can maintain the motivation to keep moving forward, while still maintaining a balance between learning and living. Especially since we still love to do things like going swimming, playing outside, and meeting up with friends for playtime. Things we do all the time and that are equally important for her development.

Whew! Can you tell that my mind is spinning with all the information I'm taking in right now?

I guess that means it's time for a break. Luckily, we're heading out of town this evening to go visit my parents for a fun escape from our day-to-day. Can't wait to post about our adventures!

Frowning at her teething ring. Working out is not fun anymore.

"This is too much. I'm done."

31 for 21- Day 27: What I Wish People Would Get About Down Syndrome

2011-10-27T09:03:00.000-07:00

"They think we love our kids in spite of the fact that they have Down syndrome. They don't realize we just love them." These are the words of Melissa Kline Skavlem, a cyber-friend that has been such a great support to me and to many other new parents on the BBC Ds board. These words have stuck with me in the months since I first read them.

Of the many things that I hope that people will come to learn and understand about Down syndrome, this is the biggie. We don’t need your pity. Our babies are not burdens.

Cora has already taught me more about love, compassion, patience and acceptance than anyone I’ve met, and she’s only 9 months old.

I won’t pretend to be an expert on this whole thing, motherhood or parenting a child with a disability, since I’m not even a year into it.

But what I know is that my life is infinitely better for having Cora in it. And all the parents I’ve met online, in person and in print seem to feel the same way. There is a reason that the new studies show that the overwhelming majority of people with Ds and their families are happy with their lives.

Because we are. So know that. And don’t feel sorry for us.

Emptying the camera today I found this video from a week or so ago. I love it, since Cora displays some of her new silly scrunched up faces, spits out her food, and peeks at me over the camera. Pretty cute for a girl in bedhead and pajamas. Pretty cute for anyone.

31 for 21- Day 26: Who is This Woman?

2011-10-26T14:53:00.000-07:00

Looking through folders I discovered a handful of beautiful photographs taken back in May by my cousin's significant other, Shon. I remember being so happy when I first saw the photos, and can't for the life of me understand why they were shuffled into some unknown folder, unseen for months. So thank you Shon for the beautiful photos. There are more of Cora, as well, which I will post at another time.

As I looked over his images I registered surprise seeing myself with Cora. My first thoughts, nonsensical really, were "Who is this woman?" Of course I recognize my features, my face, my self. But I didn't recognize myself as a mother.

When Cora is in front of me I absolutely feel like her mother. To the point of starting to speak in the third person and calling myself "mum" even when talking to my best friend. Motherhood, and especially new motherhood, I imagine, certainly takes over one's life. I have a hard time having a conversation about anything other than Cora these days. Fully aware of how that makes me look and even a little embarrassed about it, it's hard to be otherwise.

But still, to see myself through the camera's lens, and hence through someone else's eyes I don't quite recognize myself. But I like it.

Me, the mom now. I finally did it. What a lucky, lucky girl I am.

31 for 21- Day 25: Family

2011-10-25T07:29:00.000-07:00

Having committed to blogging daily this month, I've been reflecting on what this journey into parenthood has taught me. While I have certainly learned a lot in the last nine months, I've also had the chance to re-affirm some truths, as well.

One of those has been the importance of family.

I've always been very close with my family. I'm blessed to have two parents who I admire and respect as people and as friends, and two sisters who are truly my closest friends. My middle sister had the first grandchild in our family just four days before Cora was born. My mother, of course, flew to Vermont to be with them, while the rest of the family began planning trips for a few days later. All the time they were waiting for Cora to arrive. But my husband and I had planned to have a home birth with only the attendants present, and then to celebrate the first several days of her life at home alone, a newly hatched family of three. And then Cora arrived and all my expectations shifted.

While my family knew I was in labor, I didn't call them until late afternoon the next day, several hours after Cora had arrived. In the time in between, I was recovering from childbirth and reeling from the arrival of a baby with a secret that had rocked me to the core. Although I recognized the features of Down syndrome in her eyes the moment they lay her on my chest, I held out hope that I was wrong until my midwife "broke the news" after examining her. And when I had my worst fears confirmed, some of my first thoughts were trying to figure out how I would tell my family. So I waited until the bustling commotion died down and the midwives were leaving and then called my mom and sister. I really don't remember what what was said. And even though I was scared of what their reaction would be, I do know that they told me that they loved me and they loved Cora. And things felt better somehow after that.

Within a day, both my parents had traveled in and my youngest sister was on the way. They stayed with us to help out while Cora was in the NICU, and then again during her surgery. And of course we've had plenty of visits in between.

And although I knew that my family would be so important after having a child, I didn't really realize how important. How can I even quantify how much they have helped and supported me?

And, even more, they are so important to Cora. My sister Mira shared some beautiful thoughts a few months ago (that Mira... our family's baby but oh so wise). She told me that Cora's gift is that she is charismatic and captivating and draws people to her. How it's her gift to us and also her survival mechanism, in a way. She went on to say how important that was. How important it is that Cora has the love and support of family and those around her, because she needs that little bit extra.

And boy does she have it.

Cora with Grammie and Mira late one night in the NICU while I was at home in bed.

They were all partying because they got Cora to take a FULL bottle (quite the feat!)

Itty bitty Cora getting some good Mira loving.

Look how much her Grammie loves her!

Fun with Grandpa Phil!

It was pretty exciting to meet her Grandpa Mike!

The wacky MacDonald clan. Yes, Cora fits right in!

Favorite Auntie Dana loving on her niece.

Cora's cousin Kai is very exciting!

So I want to say thank you to my family. Thank you for being so wonderful to me. And thank you for loving my baby so.

Side note and apology to Favorite Aunties Erin, Tara and Ariel: I am sorry you're not pictured here. We need some pictures STAT!

31 for 21- Day 24: Costume Junkie

2011-10-24T11:08:00.000-07:00

A little confession time here: I admit it. I get a high from dressing up in costumes. I pretty much always have. My mama is a thrift store queen. And she is a bit of a costume junkie herself, so there are many costume boxes in my mother's house. When it's time for Halloween or any other event that inspires us to get all decked out, going through my mother's boxes is an adventure in itself.

I'm guessing Halloween 1987 or so...

Me (the cat), sister Erin (Kid Terrific) and sister Mira (Cute Witch).

My own costume box is fairly minimal in comparison. I've got some odds and ends from here and there, but it contains a lot of pieces from costumes I've put together over the years. Here are a few of my favorites:

Doll costume on Halloween day maybe 3 years ago.

We didn't even go out but just answered the door for trick-or-treaters.

New Year's Eve a couple years ago, me and the sisters again.

Why are we dressed like this? Why not?
(Left to right, Mira, Erin, me)

Mardi Gras night on the Legendary Rhythm and Blues Cruise. Fun!

One of the best costumes we did: The Flintstones and the Rubbles, Halloween 2009
I made the Rubbles' costumes and Christine made the Flintstones' costumes.

(Left to right: Nick as Barney, me as Betty, Christine as Wilma, Shane as Fred.)

And my main claim to fame: the BEST COSTUME EVER!!

Smurfette about 6 years ago.

Yes, I put this together myself: blue liquid latex for upper body, makeup for face, tights for legs.

Overall effect: priceless. But it was not fun to remove.

This year it's pretty exciting that I get to dress up Miss Cora. Although I've seen some adorable little pre-made costumes out there, I couldn't help but want to craft one up for her.

So here's a sneak peak of the costume pieces, although I feel like it's cheating if I post the pictures of her wearing it already... oh but they're cute!

Antennae headband, made from pipe cleaners and felt ladybugs.

Handmade tulle tu-tu with black puffball dots.

Bodysuit, made from a white onesie dyed red, with cut-out felt dots glued on.

It may have taken several hours to make, and whether it's really that much cuter than store-bought is a matter of opinion, but it's much more rewarding for me. And I can't wait to post pictures of my cute little Bug.

31 for 21- Day 23: Silent Sunday

2011-10-23T16:07:00.000-07:00

31 for 21- Day 22: Make New Friends

2011-10-22T20:38:00.000-07:00

As I've written before, one of the wonderful things that Down syndrome has given us is the privilege of meeting some incredible people. It's important to me that Cora get to grow up with friends and peers that have Down syndrome, as well as friends who are typically-developing. And I admit that it's also been helpful for me to make friends with other parents who have "been there," especially those with kids a little bit older than Cora.

When Cora was 10 weeks old we went to a small local gathering of a few families who had connected through the Babycenter Down Syndrome Board.

It was there that we met Susan, Paul and Anthony. Little Anthony is almost 2 years older than Cora, so he's able to show her the ropes a little bit. Or at least he will be able to once she gets over her shyness around older boys...

Okay, super goofy photo of me on the left,

with little 10 week old, NG tube Cora and little Anthony sitting next to her.

With cameos from a couple other little cutie friends too...

We've met up with this lovely little family a few times, and thoroughly enjoy them every time.

A couple of days ago we all met up for dinner and some microbrews to catch up. As always, it was a pleasure. Anthony got to zoom around a bit and enjoy a grilled cheese sandwich, while Cora sampled some applesauce and pickles.

Miss Cora sat in a big girl restaurant high chair for the first time and had a blast. By the end of the night she was cracking us up with her excited antics, and stayed up way past her bedtime.

You can read about the adventures of Anthony and his family on Keeping Up with the Carsons.

Just one more great thing that Down syndrome has brought into our lives!

Anthony and Cora enjoying their night out on the town.

Okay, so maybe they don't look super thrilled at the moment....

"You see, Cora, when you're big like me look what you can do!"

"That may be true, Anthony, but there are some advantages to being little too..."

31 for 21- Day 21: Blog Hop

2011-10-21T07:54:00.000-07:00

Today, on the 21st of this month of celebrating Down Syndrome Awareness, I am honored to be part of a blog hop.

If you've hopped here for the first time, Cora and I welcome you! Scroll down for previous posts to read more about us.

If you're a reader of my blog and would like to check out other blogs that are also honoring 31 for 21, just click on the button above. (And if you like a post, leave a comment or even become an official follower.) What better way to raise awareness than to visit the blogs of other families that are posting about their lives with people with Ds?

Woo hoo! Cora thinks this is gonna be fun!

31 for 21- Day 20: Faith and Down Syndrome

2011-10-20T10:51:00.000-07:00

Today’s shared topic is Faith and Down Syndrome. It’s a topic that really had me a little stumped at first. I contemplated skipping it. What do I really have to say about faith and Down syndrome? Is there a connection between them for me? In truth, the subject (at least the subject according to me) has been pinging periodically in my thoughts and I’ve been hoping to be able to develop my feelings on the subject. So I’m attempting to take this opportunity to stretch myself a little and explore what this means to me.

At the time of Cora’s birth I honestly wasn’t very focused on my faith. Caught up in the long-anticipated arrival of a child into my life, I was pretty single-minded. In my heart I knew Cora already, knew that she was meant to be with me, but she was still a mystery. And I certainly didn’t have a clue what her arrival would come to mean to me.

Then, when she was born, the initial shock, pain and anguish was blinding. For a short while at least. Not to say that I haven’t struggled with her diagnosis or experienced pain since then. I absolutely have. But with our mad rush to the hospital with a blue baby, and the news of her serious heart defect, everything was suddenly so precious, so poignant and so seemingly precarious. How could I be suddenly faced with the risk of losing this baby I had wanted for so long?

And in all honesty, the reason I was able to accept her diagnosis early on was that I began very powerfully to feel that she was given to me for a reason, regardless of whether I understood that reason. Perhaps that is a simple sentiment, clichéd, even, but for me it began to resonate powerfully.

In the midst of feeling slighted and punished and wailing “Why me?!” into the universe I came to some of my own answers. I know that many parents of children with disabilities are irritated by society’s opinion that they must be special themselves. Must be stronger than the next person. Must be more humble and patient than the next person. Because it really isn’t true. We’re not heroes. We really are no more special than anyone else.

But I do believe that I am specially and uniquely suited to be Cora’s mother. I believe that this was a position carefully chosen for me. Chosen by God, of course. Chosen by the soul of my daughter and chosen by my own soul. And this knowledge was secure in my heart, even when I was grieving what I thought I had lost. Quite simply, this is my faith.

The powerful love and acceptance and sense of community we’ve shared since Cora’s birth has also strengthened my faith. I truly believe that the far reaching love, thoughts and prayers that were sent to us in her early hospital days and during her surgery are largely responsible for the wonderful outcomes. Despite all my worries and fears, I will never forget the peace I felt when we finally handed Cora off for her heart surgery, the calm knowing that she was in perfect hands. That moment was probably one of the closest I’ve come to my own perfect faith.

The fact that she has Down syndrome is not irrelevant. Whether I am her mother because I am somehow stronger, more special or more equipped to be is not the question. I am her mother because she was meant to be in my life, because she was meant to change my life and my perspective, my values and my sense of self. She was meant to change my direction, give me focus and clarity. And I have faith in that.

31 for 21- Day 19: Wednesday Fun

2011-10-19T13:12:00.000-07:00

It's been a day of fun under our Western Oregon overcast dreary skies. For that we are thankful, since we can expect a lot of wet over the next few months. Dry is great, since it gives me and Cora some outside fun, which she LOVES.

For us, it's a great time of year. Less sun is not too bad when you're pretty much lacking pigmentation, a trait that Cora will one day most likely not be thanking me for.

The worst of her cold seems to have passed, so we've been passing the day giggling like little fiends. For some reason things are very funny to Miss Cora today. She cracked up for quite a while playing peekaboo today along with some of my own creative variations. Oh what I wouldn't give to have a video camera installed on my forehead for those occasions.

She has also started this new game that I get a huge kick out of. I've been trying to teach her to clap for some time. While she likes it when I clap her hands together with a "yay!" she LOVES it when I clap mine. For a while she's been holding onto my hands when I clap. But in the past couple of days, she's started to pull my hands together and push them apart to make me clap. Laughing all the way, ha! ha! ha! You think kids with Ds aren't smart?! This little girl is clever!! She also moves my hands for peekaboo, although won't use her own. Funny little trickster she is!

I leave you with some hilariously cute photos from our outdoor excursion today. Yes, she's pretty much the most adorable thing ever! And maybe tomorrow I'll up the ante and start posting about more serious, real Ds things. Or maybe not...

31 for 21- Day 18: Sweet Baby Love: Our Rituals

2011-10-18T17:19:00.000-07:00

Today I've been thinking of the rituals that Cora and I share. Those cherished recurring moments in our days.

Like that minute when she's finished nursing and relaxes on the nursing pillow, snuggled in tight, gazing up at me with the sweetest little eyes and a content satisfied face.

Or the first 20 minutes of our mornings spent in bed, singing, smiling, giggling, and babbling (and usually letting Daddy try to sleep).

And stopping by the mirror to wave and smile at the cute baby and her Mumma.

Or getting settled into sleep, both of us lying on our sides, nose to nose, her tucked in a little ball with her feet in my lap, pacifier in mouth. I think Cora thinks she's putting me to sleep too, since she usually pats my face as she drifts into dreamland.

And that smiley, giggly time just after her baths, complete with a jojoba oil massage.

These ephemeral little rituals are such a lovely part of my days. I'm so grateful for these small moments and know that it won't be long before they fade into our history and make way for new ones to come.

31 for 21- Day 17: Sniffling and Sneezing

2011-10-17T19:07:00.000-07:00

Today was a pretty typical Monday. Work for me during naptime (which was strangely short this afternoon), a walk in the cold morning air, a visit to the chiropractor for Cora and for me, and lots of snuggling. Cora seems to have come down with her first cold. I guess it was a little presumptuous of me to be patting us all on the back for her having stayed healthy all this time.

But it seems to be pretty mild at the moment, and we're hoping it gets better rather than worse, especially since we have a date with Cora's friend Anthony and his awesome parents later this week.

I'm fighting my own throat tickling, a real bummer since I had a cold a few short weeks ago. So it's been a pretty mellow day. I'll be taking my usual supplements: Vitamin D, a food-based multi, fish oil and probiotics, in addition to some extra immune support. Cora gets her own probiotics, but the rest she'll get second hand from me. Let's hope they do the trick.

On a fun note, we just got our first Baby Signing Time video in the mail today. Cora is already enthralled, so we're hoping it will inspire us to amp up our signing efforts and hopefully give Cora a leg up too.

Happy Monday.

Little sniffly, sneezie Beanie. Happy enough as long as I stay close by.

31 for 21- Day 16: Sunday Night

2011-10-16T20:02:00.000-07:00

It's almost the end of the day for me. Sunday night. Cora is being put into bed by her Daddy, the dishes are done, the groceries put away. Small pieces of evidence of the fun we had this weekend still linger in piles throughout the house, daring me to put them away before the week starts again.

But I'm in my pajamas, ready for a glass of wine and trying to decide whether I have it in me to work on Cora's Halloween costume tonight. A batch of cookies is baking in the oven. Cookies and wine.... mmmm.

I was told that I could expect a guest post today by a certain unnamed member of my small immediate family, to no avail. So I am sitting here with absolutely no agenda, typing out this post. Can't get behind on my daily posting commitment. So far I have actually enjoyed this more than I thought I would. Originally thinking it'd be a struggle to come up with daily posts, in a way posting more frequently has been sparking my thoughts. I write posts in my head throughout the day and just hope I'll get time to put them into words on the screen. But today I have nothing profound to say.

So I will just say that I am thankful. So thankful for my family, for all the blessings that we have. As we put our girl to bed, the memories from today still make me smile. Taking that girl swimming constitutes a lot of those smiles. We need to take a camera with us soon to memorialize her bliss.

I hope that you've had good times with your families as well. And for those little ones in my blogosphere that are recovering from pneumonia in the hospital, or just back at home after a long recovery from open heart surgery, I send you my thoughts also.

Goodnight.

"I love the weekend!"

"Look, Mum, I'm doing the splits."

"Sitting on the slide by myself... no big deal."

31 for 21- Day 15: Called Out

2011-10-15T08:13:00.000-07:00

This week I experienced something for the first time. And yes, it took 9 whole months to happen.

At a consignment sale, the check-out woman gushed over the Beanie girl. Then she asked me if I knew so-and-so. I said that I didn't and asked her if I looked familiar. She said no, then paused, and asked if we were at the Buddy Walk. What a great way to ask or confirm that someone has Down syndrome!

It turns out her good friend orchestrates the Buddy Walk for a local community, which wasn't the Buddy Walk that we participated in. But even so, it was a fun interaction and left me smiling as we walked out the door. Cora even decided to display some of her silliest raspberries and smiles too.

Lately I've been wondering what people think when they see Cora and whether they are wondering if she has Ds. But the truth is, I really don't care. I seldom volunteer that little fact when someone stops to say hello or try to get a smile out of my pretty girl. But when involved in real conversations I'll share. The other day I met a great woman at the pool with her 4 month old son (who weighed about the same as Cora). We talked for about 20 minutes, during which time I talked a bit about Ds. Judging by her reaction, it wasn't a surprising revelation. And it felt good to talk about Cora and our lives, her diagnosis, and parenting.

I guess I am happy that Cora being recognized as a member of the club really made me so happy. Early on I was afraid of how I'd feel when this happened. I am thankful that it was a positive interaction, since they may not realistically all be that way. But so far, our experiences have been overwhelmingly good. We've been blessed to be surrounded by people who have welcomed Cora with open arms. Life is good.

31 for 21- Day 14: Is She Really 9 Months Old?

2011-10-14T10:24:00.000-07:00

9 months. 9 whole months. Cora's been with us now longer than I was pregnant. Add up all that time and it really feels like she's always been here, even when the time is flying by.

She had her 9 month well-baby visit yesterday. Sometimes I just have to marvel that she's well enough for a well baby visit, after so many early visits that were anything but. Everything looks great. She's 16 pounds and just under 26 inches. Yes, she is growing and thriving.

But the most fun new development has been that Miss Cora has started sitting independently!

Now I don't really have anything to compare my feelings to, since I've never had another child. I'm sure that it's exciting when a typically-developing baby learns to sit. But I just can't get over how thrilled I am about this. We've been working with her for months largely focusing on sitting and it was feeling like it could still be take quite some time. And now, suddenly, with no warning, she's just sitting, chilling, hanging out with the rest of us. With no help and mostly without throwing herself backward. Even last weekend she was still a little wobbly, but now she's so much steadier, sitting by herself for several minutes at a time.

So we are very proud of our little Beanie. I just love seeing her sitting there, smiling at me. Like she's been doing it forever. The view must be so much better than lying on the floor or falling over after being propped up.

It's a much better view for me. And if doing these impressive things means that she's going to keep on growing up, I guess that's OK with me too!

Despite my efforts, these are the best sitting photos so far. More to come!

31 for 21- Day 13: I'm Glad I Have a Child with Down Syndrome Because...

2011-10-12T12:03:00.000-07:00

... an extra 21st chromosome seems to make for some awfully cute babies. And I'm not only referring to my own. Some of the cutest children I've ever seen happen to sport those designer genes!

... we've been inducted into an inspirational community of families who share the same blessing, and the love and support within this community impresses me on a daily basis.

... babyhood seems to get to last just a little bit longer, and is maybe even a tad bit sweeter (no bias here!) Although I long for a prolonged babyhood for Cora, I must admit I am thrilled beyond belief when she accomplishes a new milestone, which she has just done this week, but more on that tomorrow!

.... I feel like it's brought me closer to who I really am, and what I am meant to do with this life.

.... it has reaffirmed my faith in humanity and the power of love and prayer.

And how can I not be tickled by the silliness of this little face?

Or sucker-punched straight in the heart by this little smile?

31 for 21- Day 12: Pretty Much WW: Upside Down

2011-10-12T07:38:00.000-07:00

OK, so forgive the silly adult voices mimicking baby-talk and the washed-out coloring from bad lighting. I think we need to start taking more video of this little cutie. Dirty face, crazy hair and all.

31 for 21- Day 11: Out on the Town

2011-10-11T08:50:00.000-07:00

Lately we've been mixing it up a bit around here and going out in the evening more frequently. We'd been trying to be super consistent with Cora's sleep schedule, but it really doesn't seem to be reducing the night wakings, so we figured some periodic evenings out could probably help all of us.

Last week one of Nick's cousins was up from Los Angeles to display his art in one of the downtown Portland galleries. So we packed up the little Bean and went out. The pieces were beautiful, and Cora loved the colors. Packed into the tiny little room, she oohed and aahed over the lights and the paintings until it was time to go home. She was the only baby we saw out at the art walk that night.

Then the next day we took Cora to Nick's favorite sour beer brewery to spend time with our friends Shane and Christine. Nick and I shared a lovely chicken cordon bleu sandwich, some house made pickles and a small plate with cheese, pears, honey and crackers. Cora nibbled some puffs, sat on the table and entertained us.

It was definitely nice to get out a bit, rather than subscribe to the idea that having a baby prevents us from doing anything. And the fact that she has Down syndrome? Doesn't even factor in, although unless you count the extra cuteness that that extra chromosome seems to add, making her a bit of a star everywhere she goes.

Cora discovered the ceiling fan right from the start.

Nice cuddles with her Teenie.

This looks like another great thing to grab!

31 for 21- Day 10: Seriously?

2011-10-10T07:50:00.000-07:00

Today I cried browsing through the newborn photos of a photography blog.

It's funny how emotions can hit you, especially when you think you're happy with everything. And I really am.

But looking at the sweetest little 18 day old baby with his proud parents makes me remember when Cora was 18 days old. It was a happy day because we were going to take her home from the hospital the next day. And that was truly wonderful.

I guess I just feel a little sad that we didn't get to do a beautiful photo shoot with her at such a young age. That she had a feeding tube taped to her sweet little face, was still quite jaundiced and we were hesitant to even take her out since it was so critical to keep her healthy before surgery. We certainly were not up to planning a professional photo shoot.

But the last thing I want to do is feel sorry for myself. Because after all, we did manage to get the sweetest and best girl, even if her earliest photos are a little blurry, captured in the awful NICU lights. I guess you can't have everything!

Okay, I admit it. She was still such a pretty girl, tube, NICU lights and all.

31 for 21- Day 9: Shouldn't I Have Known?

2011-10-09T10:18:00.000-07:00

In the months since Cora was born I've had a few moments of reflection and wondered if maybe I should have somehow known that something was a little different during my pregnancy. At times I've even thought that I should have known that something was "wrong."

For some reason I always expect myself to be more in tune with myself and my body than I really am. I have learned time and time again how intertwined my mind and body are; usually after I end up making myself sick with stress and worry. And strangely, every time I am surprised that my body reacts. There have been times too when my body has been the barometer that something is off with me, whether it be negative recurring thoughts, fears or anxieties that I try to suppress.

I always thought that I'd instinctively know when I was pregnant. And I think that in some way I did. Although, after my first negative pregnancy tests I was so stubbornly convinced that I wasn't that I ignored all the obvious clues for several days. (That little joke was on me!)

Yet despite my off and on relationship with my own body, I definitely felt very connected with Cora during her months in utero. At one point in the early months, during a few days of doubt and worry I convinced myself that something was wrong, that she had already not survived. But in the midst of my fear I suddenly felt the strong and powerful presence (distinctly female) letting me know that everything was fine. That she was fine. Buoyed by that knowledge I remained confident in her perfection throughout the rest of my pregnancy.

During my last few months of waiting for her I practiced self hypnosis to prepare for my natural home birth. While it may seem "woo woo" to some, the experience was immeasurably valuable during the pregnancy, during the labor and very much so during the stressful weeks following her birth. And although it was sometimes a struggle to quiet my anxieties, I really felt like it helped me maintain a communication with Cora before she was born. I still do feel this. And reflecting on that, I've asked myself the question, "Why didn't I know?"

And the answer I've come up with is that I believed everything to be perfect and fine because it was. The initial shock of her diagnosis immediately after birth shook that belief hard. I thought that I was so wrong to have naively believed everything was perfect. But now I know the truth: that I knew her already even in those early months inside, when the secret of her extra chromosome was still hidden, and that I innately knew that she was and is perfect just as she is. And as nice as it is to re-discover this truth about Cora, it's also nice to discover that I knew it all along.

31 for 21- Day 8: Sleeping Like a Baby

2011-10-08T10:59:00.000-07:00

What a ridiculous expression! I'm sure that most of you who have ever had a baby know that the expression that conjures images of restful sleep is pretty inaccurate.

I'd heard that sleeping can be an issue for some children with Ds, but I've also heard about kids who sleep through the night from Day 1.

Little pre-surgery heart failure Cora slept all the time and through the night. Or she would have if we weren't constantly waking her to try and eat. Note that this does NOT mean that I slept through the night. I usually was up every 1-1/2 hours for about 1-1/2 hours. Yes, fun, but lack of sleep is expected when you have a newborn.

Then for the first few months after surgery she slept great, and we were able to gradually reduce her night feeds to the point where she would sleep through without needing to eat for about 10 hours. So I started to gradually get more sleep too.

But then she turned 6 months old and all that stopped. With the introduction of solid foods she started waking up at night. It doesn't seem to be a specific food intolerance since we've given a variety of foods individually. At this point she wakes up several times a night and needs Nick to use his "secret weapon" to get her back to sleep or needs to be nursed. Yes, we've tried letting her self-soothe, but she'll stay up indefinitely whining the whole time.

So the whole sleeping through the night thing is not a reality in our lives and certainly doesn't seem like it will be any time soon.

But what's supremely frustrating is that when I worry about sleeping, I get insomnia. And it's been plaguing me a lot lately. Last night I was in bed for more than 9 hours and slept less than 5. And it's really not Cora or Nick's fault. I've even taking to sleeping upstairs away from everyone else. It's getting to the point where I can barely sleep in my own bed.

Ah, the joys of parenting, right? To tell the truth, in some ways it's a relief to be dealing with such typical parenting struggles. After the stress and worry of our lives pre-surgery, life became pretty euphoric for a while. It seemed that the typical early parenting woes and the difficult transition didn't really apply to me. Because the initial worry made me feel so apart and so atypical, and later, the intense joy and high from suddenly having a healthy baby made me so happy. I just couldn't relate to other parents who were worried about what seemed to be mundane day-to-day things.

Except that now the day-to-day seems significant to me. I get stressed out and frazzled like the rest of the busy mommies of young babies do. But even so, stressed and frazzled and tired, these "mundane" worries can be kind of nice, since they're mingled with the joy of life with Cora.

Little Cora certainly is not worse for the wear-- although her bedhead may be!

31 for 21- Day 7: What's on Her Mind?

2011-10-07T16:14:00.000-07:00

I wonder what is on my little girlie's mind sometimes...

Oh, she's pretty good at communicating how she feels. When she smiles, it's usually a full-body event, with wriggles and giggles and coos. When she starts to stick out her lower lip and scrunch her chubby little face into angry redness it's pretty clear what she's thinking. And when she gets really excited and starts to shake while reaching for the front of my shirt... again, pretty good communication.

But what about when she babbles up a storm, experimenting with tones and pitch and syllables, sometimes stretching a sound out until it disappears into a whisper, usually leaving us laughing and very impressed with her breath support? And what about when she gazes off, sweetly sucking a sweatered thumb? It's then that I wonder what's going through her mind.

Is she talking about all the fun things we've done today? Is she remembering the time we spent playing on the therapy ball and practicing sitting, or eating small chunks of banana? Or maybe she's thinking of the fun we had at the pool today or the new experience of gumming her first rice puffs?

Whatever it is she's trying to say, listening to her go on and on and on makes me smile. Keep those words coming, Little Beanie girl!

31 for 21- Day 6: One Thing I Love About Down Syndrome

2011-10-06T09:22:00.000-07:00

Here we are on Day 6 of the blogging challenge 31 for 21. And today, a number of parents in the Ds blogging community I am proud to be a part of have chosen to write about the same topic: "One Thing I Love about Down Syndrome."

There are so many ways that our introduction to Ds has changed our lives, and changed them for the better. Down syndrome is a part of Cora; a part of every little cell in her body. It affects how she looks, it will affect her development, and it will likely affect her health to some extent. That extra genetic material (most likely from yours truly) makes her just a little bit different, and contributes to who she is. It's something we can never remove. We can never know what she'd be like without it. But that doesn't matter to us. It's part of the Cora that we love.

Ds has also given us an incredible new community of people we would likely not have otherwise known. I'm very grateful for that. It's given our lives new perspective and new meaning.

But on a lighter note, the one characteristic about Down syndrome that I love and that keeps coming back to me when I consider this question, is Cora's little tongue. It is one of the things about her that gets the most comments and compliments. Everyone seems to love that sweet little tongue. Some people may not realize that tongue thrusting, or a protruding tongue is a common characteristic of Ds. And that as Cora gets a little bit older, her therapies will aim to reduce the tongue thrusting.

But for now, that soft little tongue is all over the place. Everything she explores comes into contact with that little tongue. It adds a dimension of cuteness to many of my favorite pictures of Cora. And even though as she gets older it will probably not be considered quite so cute, for now I love the glimpses of my favorite little tongue.

31 for 21- Day 5: Partners

2011-10-05T08:09:00.000-07:00

When I was pregnant I endlessly read about parenting, including advice on the transition into parenthood and how it affects individual identities, relationships and marriages. I heard about marriages that were strengthened by parenthood and marriages that were shaken and weakened by parenthood. And I wondered how Nick and I would fare.

Then when we learned that Cora has Down syndrome, I worried again. Could our relationship hold up to the trials of raising a child with special needs? In those first few tumultuous days after Cora was born, I knew that we would have to really stand together and support one another as we struggled to understand our new roles as Cora's parents.

And I am happy to say that I think I fell in love with Nick all over again as I watched him become a dad to Cora. During those first few weeks of long hours at the hospital with our baby, I would often fall apart the second we were alone, and constantly burst into tears while reading about what to expect or while browsing through birth stories on the blogs that are now my regular companions. Nick was there for me through all of it. And even more importantly, he was there for Cora too. That little girl has him wrapped around every single one of her fingers and toes, and he loves her fiercely, protectively and completely. And I love him more every day just witnessing it.

So if you've asked yourself if you and your partner could handle it: handle becoming a parent, even, or becoming a parent to a child with special needs, maybe you will be pleasantly surprised, as I continue to be every day.

31 for 21- Day 4: What Would I Say?

2011-10-04T16:14:00.000-07:00

I took a call from a friend a few days ago, who broke the news that a mutual acquaintance of ours is expecting a baby. My friend wanted to know if I would talk to her, since she is interested in having a home birth. My friend also hoped that I would be willing to talk to her about prenatal testing options, since she is worried about the risk of things "going wrong." It seems that if there were anything "wrong", it'd be a deal breaker.

So my friend thought that I'd be the perfect person for her to talk to. And as happy as I am to talk about what we've been through, I started to wonder what I would say. What do I have to offer? I guess I do know about the testing options available now... And I have a wonderful naturopathic midwife that I'd trust with my own life. And now I have all this perspective on the subject of prenatal testing and things "going wrong"... right? Since things "went wrong" with me?

But what I don't have is the perspective on making the kind of choices that prenatal testing tends to lead to.

What I hope that I could offer is the perspective on how things can turn out perfectly right even when the test results don't give you the answers that you may have wanted. And I could help guide her toward glimpses of other families whose lives have been enhanced by the very extra chromosome that so many others perceive as being wrong. Moms like Annie, Megan, Courtney, and Jennifer. I can hope that our stories could give a worried expectant mother a vision of other options when looking into prenatal testing.

But what do I say in the meantime? Am I strong enough to offer my insights knowing full well that even so, the recipient could very well still make a choice that breaks my heart? I guess I have to be. Because that is part of learning to be a voice for my daughter. Especially in an age where the vast majority of babies diagnosed prenatally are not carried to term.

I guess discovering what to say will have to be a work in progress. I can certainly say that Cora is the greatest joy of my life and that if I could, I'd choose to have her over and over again.