The boys were zooming through the house the other day, forced inside (and under foot), thanks again to rain. (oh, but it cleared up in time for baseball!)
"She's Up! Annie's up!" Mason yelled (gee, I wonder why!?!?!), and before I knew it, 3 masked-Jedis were flying up the stairs to see her. Whenever the kids see her, after a nap, after school or any other time apart, it's as if they've been away for days. They get soooo excited!
I tried to stop them. "Wait you guys! You're going to scare her!"
Now, I've never seen "Star Wars" in my life. I know, I know..you're thinking- 40 years and 4 sons, and you've never seen "Star Wars?" Un-American!! No, just uninterested. However, in my 40 years, and through my 4 sons, I've picked up on enough to know that some of those creature guys are kinda creepy, and they were about to barge in on my baby! (Darth Vader, a Clone and Darth Maul to be exact)
But Annie? She just smiled, and laughed, and reached for those creeps! She wasn't afraid at all of the Dark Side!! She even posed for a picture!
But me? I still tend to fall for that darn Dark Side. I still let it catch me off guard, when I'm tired or afraid, and I let it get me.
Up until recently, Annie has pretty much been just like any other baby-more alike than different as the say in the Down Syndrome circles. And this is so true. In this family, Annie is just one of the gang. #6. The baby. She does what we do, goes where we go, and Matt and I treat her no differently than we do any of our other kids.
She loves the water, especially playing in it. She thinks the toilets are water tables
She loves emptying my cupboards - all day long. Her favorites are the ones under the kitchen and bathroom sinks. I know she has eaten dish soap more than once, and I'm pretty sure that she likes it
She has a love affair with the vacuum. Not kidding. She hears it start up and she swoons, and follows me around the house! I have to leave it running when I'm finished, just so she can hug it, and she wont stop until I turn it off
She loves her brothers and sister SO much, and wants to be in on everything with them. Doesn't want to miss a beat! And they are wonderful at including her. She sees 3 therapists regularly, and they are fantastic, but you will never ever convince me that these 5 aren't her best teachers, hands down.
As she gets older (she is 19 months already!!), Annie's disabilities and delays are becoming more and more apparent. Babies of friends and family born 6 months (or more) after her are already walking and talking circles around her. And while we knew this, expected this, and anticipated this, I never anticipated the sadness that would still sweep over me.
While friends and family proudly share (and rightfully so!) their baby's growing vocabulary, first steps and other milestones, I keep plugging away at Annie, oftentimes with minimal results. Up until a month ago, she showed little interest in walking (however, lately she's quite the show off, taking 3-4 independent steps at a time!). It took me over a month just to teach her to sign "more." She doesn't say one word with intent. I take her to weekly PT and OT appointments where they try to "teach" her to play and strengthen her core muscles so she can eventually walk, and sometimes I question if it's worth it.
Everything she does that a typical baby does with ease - everything - takes extra effort, strength & energy, not only from her, but from us.
And sometimes I get sad. Sometimes I get mad. Sometimes I get frustrated, and I get tired of all of the "extras" she requires. I don't like to think too far into the future because it fills me with all sorts of "what ifs," and then I go to Google, and then it's all downhill from there....Sometimes I find myself still asking, "why her?" I stare into her adorable face and wonder, "What is it that you want me to learn from her, Lord?"
And He answers me, every time, with Light.
You are the light of the world. A city set on a hill cannot be hidden; nor does anyone light a lamp and put it under a basket, but on the lampstand, and it fives light to all who are in the house. Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in Heaven. - Matthew 5:14-16
So when I'm wallowing in the muck of the Dark Side, I just look to Annie, who could care LESS that a fellow baby is walking or talking, she just wants to play! And I know exactly what she's telling me with her infamous, pardon the Star Wars reference, "Chewbacca" call (my friends and family know what I'm talking about here) Who needs words? And I learn from her, more than she'll ever learn from me.
I've shared before that there was a time, before Annie was born, that I was afraid of what she would look like (and how can you blame me, when, out of the blue, I was informed that my baby had a missing nasal bone, shorter limbs for her gestational age, and holes in her heart?) I was afraid of telling people, and feared their reactions when they saw her. I didn't want to be know as that "family with the Down's kids" I wanted to put her "under a basket." I doubted the Master Artist, and instead painted my own picture. And it wasn't pretty
But oh was I wrong, and I'm making up for it. I'm sure I drive my "friends" on Facebook nuts with all of the pictures I post (unless they've blocked me by now..haha), but I can't help but share this face! This face? She's my light in the Dark Side. She is everything good and right, and I'd share this light with the world if it meant helping just one scared mother choose life.
I can't.
I can't wish it away because that would fundamentally change who she is. I can't wish it away because I would miss out on a lifetime of love and lessons and light that only she can give.
And so we move forward, at Annie's pace. And we are brave because we know that, even when we dabble in the Dark Side, it won't win.
Thank you, Star Wars.
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P.S She finally got some teeth since I last posted! And in a very unique order: one on the bottom, followed by 2 molars up top, one molar on the bottom, the second bottom tooth, and one top front-tooth. Cutest smile ever
How do you like her new wheels??
Love all of this, Maggie! Your thoughts and feelings are so honest and true. Thank you for sharing.
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