A Gray Day...

Today I find myself wondering about my beloved Miss E. My lovely little girl with the gentle hands that long ago tamed all three of our cats and their intact claws; whose empathy overflows to the babies she sees crying at the zoo; my gorgeous babe ever growing, who sacrifices her toys to her little brother and crawls into bed with him every night because she likes to be near him; my WonderBabe with the bright smile and eager eyes has caused my heart to break a little this morning.

Why does it have to be so hard for her?

Emma has Apraxia and it is so very difficult for her to communicate with the world around her and it kills me. At home in her comfort zone she talks incessantly, trying to tell us all about her day. When, again, I fail to pick out enough words to know what she wants me to know, she merely pats my hand as if to say "it's okay". She comforts me as I try to keep up with her ever growing vocabulary of sign language (which has far surpassed mine), but of which is often modified and leaves me at a loss for words. Like my poor ear for speech (and not just for those with Apraxia; ask my last French teacher. That didn't go well. Not. At. All.), my poor eye for signing (combined with a memory that barely rivals the lifespan of the fruit fly) exists as my own worst enemy. And yet she rarely loses patience, telling me over and over again what is most important to her.

I wish I was that patient.

But I'm not.

I know, without a doubt, that I reach her. I can see that she is desperately trying to reach me  and it is that striving that breaks my heart. She is trying so hard to get out of her head, and in truth has made great progress but still is faced with some walls that, depending on my own mental health of the day, can seem nearly insurmountable. Unfortunately they aren't the kind I can knock down for her.

And I know she knows it too. 

A few weeks ago Pinko Grammy and Type A Grampy came home from yet another day of proudly parading her around the neighborhood (an activity thoroughly enjoyed by all) and there was an incident. Yes, an incident. Pinko was talking to a local cashier and explained that Emma isn't really talking yet after his questions were met with not so much response at all, and Emma's face crumbled. She looked up at him in defiance and with her clearest speech and most concentrated effort said "I talk". Apparently it was clear as day.

Pinko Grammy crumbled a bit then too.

Yesterday after not so much response at all to our questions about school, she finally looked at us and said "I o ool today" (I go school today). And she said it twice.

There is so much to her that we don't know because she is having such a difficult time telling us who she is.

And that makes me wonder why it has to be hard for her.

Last night WonderLove and I began to discuss recent developments in the homestead - how WonderGabe lives on air and timeouts, refuses to sleep anymore and is rapidly destroying our house in what I can only hope is typical two year old fashion (when WonderLove told me it was but a phase and I asked if he was sure, WonderLove replied "I have to believe it is only a phase); how both of the WonderKids look out for each other in such an amazing way, protecting and comforting each other as they play together endlessly; how they are both learning so much (numbers and letters are being conquered as I type), and how in love we are with both of them - and we discovered that we both think Emma is walking funny of late.

She has stopped walking up the stairs and now reaches up to be carried. When I forced the issue last night, there was much crying, until there wasn't, and eventually she did walk up the stairs. When I asked her if her leg hurt to which she replied emphatically "yeah. yeah. yeah." Now that she says well.

Can you hear my quivering sigh shudder through cyberspace?

Of course then she did a little dance to show me she can.

Off to the doctor she will go, as it takes a lot for WonderLove to confirm my concerns. He is the perpetual optimist issuing the never ending decree of "calm down" to my Worrywart Nelly. We both know that children with Down syndrome are more prone to developing subluxation, or in layman's terms to dislocating their hips, due to the increased laxity of their ligaments and joints. I'll be honest, this frightens me. Emma worked so hard to learn to balance on her own so she could walk without us hovering over her...to think of her own body undermining all that effort is heartbreaking.

So off to the doctor we will go. Back to the doctor from whence we just came for the final round of medical screening recommended for children with Down syndrome  - the xray for AAI. This last appointment signified the big B-Bye to the "proactive" specialists Emma has seen because, after all, "she does have Down syndrome" (in case we missed that); the big "See ya, wouldn't want to be ya" to the rather victimizing world of proactive screening and testing. A sigh of relief I did breathe knowing we could finally drop some names from the roster; that the medical world finally deemed her as healthy and thriving. And now we will, I am sure, add another specialist to our refrigerator list.

And another neurosis to my bedpost.

Why does it have to be so hard for her?

And sometimes why does it have to be so hard for us?

Well.

Now that I have said it and borne into the world my fear and sadness, I will gently kill it right now. At least for today.

I am going to list five of my daughter's most endearing qualities (of which there is great competition, I assure you) and celebrate her uniqueness. Because that makes me happy.

I hope you will join me to and spread the love through Blogland.

1) Emma doesn't give affection away for free. You have to earn it.
2) Emma's care giving abilities and longings are endless. At two and half we used to catch her climbing up on a chair to stand over her newborn brother's bassinet, bottle in hand. His face would be covered in milk, and together they would laugh and laugh as she tried to feed him.
3) When Emma laughs or smiles, she does it with her whole body. Ever cell she has expresses her emotion.
4) Emma loves to dance. I love to watch her dance.
5) Emma is devastated by the time out that her little brother couldn't care less about. Her face crumples as she sits upon her lone stair step awaiting her four minute timer to go off; it's the end of the world. And, as a result, she doesn't get many.

And a bonus:

Emma is as stubborn as she is tender; as sweet as she is willful. She never hesitates to let us know exactly how she is feeling, yet she is coy and flirtatious. She is, in every way, her own little person, and that she comes by honestly.

And if you don't mind a walk down memory lane, might I share with you this little video of Emma showcasing her alphabet skills from the way back. Okay, notice the lack of a question mark at the end of that sentence. Go forward basis, people.

 I would post a more current video, but as Emma is most definitely not my trained monkey, she wouldn't dream of doing this is front of a camera anymore. Definitely not. God forbid mommy gets any proof of your talents...

Now let's all talk about how incredibly cute she is and how she will be just fine.

You start, k?