Thursday, October 17, 2013

Real Talk

Down syndrome awareness month has been really neat for me. I've been able to read a ton of stories that share a different perspective but the same thread of joy and fulfillment that our family experiences through loving our sweet Mae. But I haven't read any of, what I like to call, Real Talk. Real Talk is the hard parts, the aches and pains and the endurance that is sometimes required when there seems like no endurance left. I think October needs a little more Real Talk if we want to be honest in our representation of what it is like to raise a child with Down syndrome. My witness is just one, and it's one that is as young as Mae. At 19 months in I am still getting my sea legs on this whole thing. I imagine some seasoned parent will read this post and think, "You haven't got it all figured out, Lady." And I'm counting on it. Brace yourselves, here is some Real Talk.

There have been tears lately. Serious, heart wrenching tears. And sleeplessness. Oh man, both Scott and I are on the ropes with the sleeplessness. First it was the realization that Mae is ready to move forward in her abilities, and she can't. Well, she will, but not like other kids, and only with lots and lots of frustration. This hurts so badly. Watching my baby try so hard to be like the other kids, watching her reject being babied by the other kids, watching her feel left out and frustrated, it's so very hard. When we were talking about her OT eval, her OT mentioned that her social and emotional development is on target with typical development. Which is why I cried. Mariana wants to run, not walk. She wants to swipe the other kid's toy successfully. She wants to feed herself with a fork and spoon without my hand over hers. She wants to climb out of her crib and climb onto the coffee table and run and be chased. If you could see her efforts, you'd see a typical 19 month old trying to control her universe as she understands it. You'd also see how it doesn't work out. So I cried.

This week she had her CBC to check for Leukemia and her thyroid tested. (Still waiting for results.) I found out that the scheduler never entered my appointment into the computer, this after I showed up 3 hours late last month because I put in the wrong time. The geneticist is not exactly the easiest guy to get in to see. I cried the whole way to the office determined not to leave without an order for her blood tests. The receptionist was lovely, sweet and totally apologetic, even though it was my fault this wasn't already done in the first place. We went to get her blood drawn and the thing I thought we wouldn't have to deal with happened; she fought it.

I wrapped Mae in my arms to keep her still and as the phlebotomist stuck her she yelled, "NO! NO! NO! NO!" Her face was red and angry. I made soothing sounds saying, "It's almost over. It's almost over." I was talking to all of us. Scott looked like he'd been sucker punched and I felt like my heart had been stabbed. As usual, once it was over, it was over for Mariana. It stayed with me, though.

Why is it important to know these things? That your child will have to experience pain, that your heart will be tenderized and sore and some days all you will have is tears and sorrow? Because even in these dark days, even with the threat of Leukemia, thyroid problems, sleep apnea, motor and cognitive delays and the slings and arrows of general prejudice, I wouldn't go back to before when there was no Mariana. I may spend a night tossing and turning and my prayers may be interrupted by the dark intruding thoughts of what can happen, but my life, my husband's life, the lives of our other children and family members, are better now. Scott and I remark on it all the time; we'd rather live in fear for her than be happy without her. If you are confused by this paradox, welcome to the club. There is no way I can give you a logical explanation of this.  Real Talk; life is full of tears, heartache, disappointment and fear. But that is never the full story. Not ever.

This morning on our walk, Mae decided she was independent. I stood in front of her and she would push my legs until I took a few steps back. There she would stand stock-still as though making a difficult decision. Then she would rush forward in her little goose-step style, mouth open and panting like a puppy. She would hug my legs and grin up at me in her peculiar, "Look what I just did." way. Then, the process would start all over. A work truck drove down our street, the passenger watching our activity as he passed. It occurred to me that he knew what he was witnessing. A blooming flower in progress, the burgeoning skill of a toddler. In just a moment on his way to work, Mae gave him a gift of beauty just by being. This, a tiny moment in time, makes every tear shed paid in full.

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