So there I sat, in the lobby of the hotel, in my Walt Disney World sweatshirt and denim capris, with Calvin & Hobbes stickers boldly dancing on the back of my laptop, with an open book on the sofa beside me. For all practical purposes, I looked rather juvenile, I'm sure. The fact that I was reading The Brain That Can't Hear, and researching things on the internet like Nonverbal Learning Disorder, aphasia, right-hemisphere disorder, and auditory processing disorder was noticed by nobody, but probably makes me a major dork.
The good news is that after plowing through a whole chapter, I'm pretty sure that Micah does not suffer from much more than Down syndrome and apraxia. The bad news is that I was having a pity party. I don't wallow often, but today I wallowed. I was grateful that I was in public because the pity was kept to a minimum.
Today I was struck with the unfairness of the fact that Micah cannot talk. Isn't it enough that he's saddled with a lifelong disability that is visibly stamped on his face for all the world to see? Why is it that some kids just get the bum rap, when others seem to be gifted in so many areas?
Today I was desperately trying to find yet another reason for Micah's lack of speech, because somewhere deep inside of me is this little flicker of Hope that says eventually we'll come across something that's fixable.
Today self-pity kicked me in the gut. And today I had to remind myself that no matter what hand life deals me, it's my lot to accept it. Some days will be better than others, and it's okay to get discouraged, but in the end I'm responsible for accepting the bad as graciously as I do the good and move on so that tomorrow may bring a rainbow over the storm of today.
10 comments:
Sorry you had a hard day. I still can't get over the last post I read where Micah used his Voice to express his feelings. It was amazing as well as cute! The fact that he has the language skills to express something in such a new way (with the Voice) was really impressive!
Love to your littlest...
You are not a dork...just a mom looking for answers.
It sounds bittersweet that it's just DS and apraxia. Has Micah's therapist changed how she treats him for speech? Apraxics don't respond to the same therapy as other children. I know he's been in it for years, so I hope they have tried "everything," but now that you know, they can be consistent.
When self-pity kicks you in the gut just kick it right back and out of your life!
You are so blessed and Micah might not have the easiest time in the world but he is happy and healthy and THAT is what matters!
Hugs to you! I think it's okay to let yourself indulge in a little self-pity. Life is tough, and for some it is tougher than for others. You know the blessings you have, which you express with joy and wonder. Sometimes we all need to express our frustration and disappointment.
Aww, Karen! I wish you were having a better day!
Rest assured that you are doing everything in your power to make life as successful for Micah as humanly possible.
I'm sending you a big hug.
Oh I dunno... I think Micah does a pretty good job of expressing himself to whoever chooses to listen whether he does it with a traditional voice or not!
hugs! some days are definitely harder than others...we do the best we can and move on. I think you're doing an amazing job being Micah's mom and advocate!
I think we all have days that where we feel sorry for ourselves. It felt so unfair when Goldie was diagnosed with nystagmus. I remember thinking "its not enough that she has DS, she's also legally blind" Most of the time its no big deal now. But when I start noticing that my 4 mo old has better peripheral vision, ouch. Your right, it stinks, some days more than others.
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