Wednesday, March 24, 2010

Physical Therapy

Though the two weeks Mirabel spent in the NICU were so trying and exhausting, one blessing that came from the whole experience was the outpouring of support and resources we received from the social workers on staff (thanks, Roni!). We were led in the right direction down the overwhelming paths of Social Security, Medicaid, Katie Beckett, home care, the Infant Toddler program, etc., etc., etc..... Mirabel's diagnosis of Down syndrome automatically qualifies her for many services, which I am so grateful for, and which I am going to fully take advantage of.

Today was Mirabel's first appointment with a physical therapist from the Health and Welfare department's Infant Toddler program. Katie was very sweet, smart, and supportive, and we began what will be a federally-funded experience for the first three years of Mirabel's life.

Mirabel is only 9 weeks old, so there is not much to be working on just yet. But, we did discuss the importance of tummy time (which she doesn't seem to mind too much - as long as it doesn't go on too long. She rolled over twice the other day, but I think it's just because she was peeved to be on her tummy for so long!) Katie seemed impressed with the strength that Mirabel does have, and encouraged me with her exclamations at how well Mirabel squirms when she's awake and alert. Squirming! Who knew that would be such a cause for celebration?

Katie taught me some simple exercises, mainly a way to guide Mirabel onto her tummy to get her used to rolling over.

Next week we're meeting with a Developmental Therapist from the same program. Go, Mirabel, go!


Sunday, March 21, 2010

The "R" Word

I saw this comment on a thread from one of my fan pages on Facebook.

Anyone else want to send Jason a little note? Ask him what part of the quote is "funny?" Ask him if there is anything else he finds "horrifically offensive" that he's just willing to toss out into cyberworld because chances are it will still get a laugh? No, because that would only be proving the essence of his point (which could have been said in much more intelligent, creative, and useful words.) So let Jason go. And I'll remain a fan of Regretsy. For now.

I've never liked the negative use of the word "retard" or "retarded," even when I was very young. So to see it flung around so carelessly, abundantly, and ignorantly makes me feel painfully indignant, especially since the birth of sweet Mirabel just nine weeks ago.

So, what can I do? What can we do? We can make a pledge. We can teach our children, and let them teach their peers. (Watch as 7th grader Kevin makes a speech in front of his whole middle school. Seventh grade! Is there a more difficult, awkward time in childhood? This kid rocks!) We can just be aware. Don't refer to something ridiculous, tedious, or boring as retarded. Even though "mental retardation" has been replaced with the more-PC "intellectually challenged," the slang still springs from the diagnostic term.

I don't want to become one of those suddenly-sensitive and/or self-righteous types who becomes an outspoken naysayer just because I have been personally affected by something. So I won't rant or rave. Like I said, I've never used the "r-word" negatively or condoned its use. I am just now so keenly aware that it's harmful, and hateful, and so dang prevalent.

This post, by a father of a toddler with Ds, is raw and uncomfortable at times. But he says better than I ever could just why we need to "spread the word to end the word."

And it's always nice when a celebrity has something to say.

Happy National Down Syndrome Day! With my thanks to Mirabel for opening my eyes when you opened yours.

Saturday, March 13, 2010


Naturally, I'm up to my ears in books and articles about Down syndrome, and I've also discovered a delightful cornucopia of resources and blogs online. The way the information is presented is all across the board, and since Mirabel was born I just haven't been able to be terribly traumatized by the diagnosis, so I'm tending toward the more positive vibes out there. One of the first books we bought at the bookstore is called Babies With Down Syndrome. I tried to wrap my brain around the science of the first chapter, which was full of explanations and the words chromosomes, cells, genes, and the like. Um, yeah, I tried to understand that part. But as we all know my brain tends to start fluffing when it tries to comprehend anything on the math or science side of the spectrum. (I saw this great tee shirt on Mental Floss recently: "I'm an English major (You do the math).")

The second chapter of that book was full of words like anger, regret, denial, and rejection. I put the book down mid-chapter and haven't picked it up since. I know there is some good stuff in later pages, but for now I'm reading one called Gifts, which is a beautiful montage of stories written by parents about how children with Down syndrome enhance their lives. Then Libby, the woman behind Blessings and Glory, sent me - for free - another wonderful tome called Roadmap to Holland, which is a mother's first-hand account of raising her son. Both of these books are touching in their simple truth: having a child with Down syndrome can actually be a pretty amazing thing.

I thought this article on Baby Center was a wonderful overall description of DS, and I particularly liked the positive vibe and descriptions throughout: "beautiful almond shaped eyes," and "exceptional social intelligence."

And then, there's this. Yesssss. There's this.

Happy 8-week birthday, Mirabel! I am so excited for our journey together.


Wednesday, March 10, 2010

Meet Mirabel

Mirabel loves to nuzzle. She loves to ride around in the sling or the Bjorn so she can nap nice and snuggly.

Mirabel rarely cries. She is gentle and wise. When she wants a cuddle, she bleats once. "Ehh!"

Mirabel sleeps a lot. She loves to be swaddled. She has fat little soft hands.

Mirabel has some serious cheeks. These cheeks don't mess around. These cheeks have been known to rest on her shoulders, and I'm not even kidding.

When Mirabel is awake, she is often quietly alert. Her eyes are deep stormy blue, with bright rings around the iris. They are always darting around, and when she pauses and looks into you it takes your breath away. She sees something deep. She sees your light and knows you are good.

Mirabel has a delicious belly button. Nom, nom, nom.

Mirabel says, "What's up, World? I'm so happy to be here!"


Sunday, March 7, 2010

Community, or, Nice to 'Meat' You

Mirabel and I went to a lovely baby shower yesterday. She wore a dress that Luciya wore to a baby shower when she was a month old and looked just precious. She was sweet, and everyone wanted to look at her. But I came home feeling a little blue. I couldn't help but feel that people wanted to see her because they know she has Down syndrome. I really can't blame them; I would want to see the baby too, and certainly not in a malicious way. But she's different. And though everyone gushed "She's beautiful" (and she is), she's not beautiful in the quintessential way. Her skin is blotchy and her hair sticks up and she's got the defining characteristics and I know this. There were three other little babies there, all boys. I have a number of pregnant friends right now and they will most likely all have boys. Another thing that sets her apart.

It was hard to try and put a finger on these feelings, because I fully recognize that my family and I are so blessed to be loved and surrounded by an absolutely compassionate community who will support Mirabel forever. I just felt a little strange, a little isolated.

And then, tonight, the girls and I were grocery shopping at Fred Meyer and something happened that I've read about but have not experienced until now.

We were in the meat section and I had just put some sirloin in the car cart (for Luciya must always "drive" at Fred Meyer), when I did a double take of the little girl in the cart next to us. Wait, let me see her ears. Are they small? The way her almond-shaped eyes peeped at me from under her bangs. I hesitated, then cleared my throat and looked at her mom.

"Excuse me..." She looked up.

Now what??

"Um, does your daughter have Down syndrome?" She nodded. My throat closed up and my eyes welled with tears. "Um, I... I never... my baby has Down syndrome, too."

"Oh!" she exclaimed, "You have a baby! Let me see!" And she went around the cart to look at and gush over Mirabel and then she came over and gave me a hug.

Her name is Amy and her three-year-old daughter's name is Emily (!). And we ended up standing there, cart-to-cart, in the meat section, and talking for fifteen minutes. "I used to do this, too," she said, referring to approaching complete strangers with children with Down syndrome. It was my first time.

And what a wonderful first time experience. Amy was open and kind and realistic and peaceful. Her daughter was as sweet as can be, and Luciya entertained her with bagel crisps as we chatted. I commented on how the local DS infant/toddler playgroup we attended once was more frightening than connecting, and she totally shared my sentiments. She told me of some other local resources. We shared birth and NICU stories. I got to know so much about this woman, and she so easily read my need, and I felt better. I felt good.

Then, on the way out of the store I saw a man holding two little boys by the hand. One of them had Down syndrome. Emboldened, I mentioned, quickly, that my baby has Down syndrome and just moments earlier I had approached another parent for the first time. His wife came out of the store then with two other children in a cart and asked what was up and her husband said "That woman's baby has Down syndrome." Well, Nicole (this was her name), rushed right over to coo over Mirabel. She was warm and jovial and said she was very involved in the community.


It's out there. I felt it -- it's like a sweet, connecting secret that I will be able to have and hold and find, because one in 733 people out there will share in this diagnosis.

And maybe someday when Mirabel and I are in the store a timid mother will do a double take, and approach us, and I'll give her a hug.