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What Fear Does

December 7, 2011

Somedays we forget
To look around us
Somedays we can’t see
The joy that surrounds us
So caught up inside ourselves
We take when we should give.

So for tonight we pray for
What we know can be.
And on this day we hope for
What we still can’t see.
It’s up to us to be the change
And even though we all can still do more
There’s so much to be thankful for.
Josh Groban Thankful

Mary has been receiving fairly intensive ABA therapy in addition to her army of early intervention therapies. This week, the consensus among them seems to be that we appear to making some minor progress- though nothing is ever considered minor with this little girl. Hearing and vision impaired, low-tone and a host of other little issues, she has been followed by an army of therapists and doctors since she was about 4 months old.

Today her therapist was trying to point out to me that my nonverbal 26-month old appears to making some pre-verbal sounds- possibly a sign that words may be on the horizon? I should be thrilled. Instead, I’m heartbroken and very much afraid. We’ve been here before. A year ago she was using American Sign Language- she was signing to me. Last winter, she had words. Not many- maybe just 2 or 3, but she had them and she used them. It was amazing. I had been warned she would talk late, due to her various disabilities. I was ecstatic that she appeared to be speaking relatively on time. Then it stopped. She became silent. We thought maybe it was more of a pause- that she was working so hard on so many other skills that she had put her words aside. The words, and those precious signs all disappeared. They never came back.

I want so badly for her to be able to talk to me. To tell me that she needs me, that she’s hungry, happy, hurt, excited, or just a simple hello. I want those words back. So why would I not get excited when therapists tell me it might be almost about to happen? Does that make me a bad mama?

I am terrified. So many doctors had predicted these regressions and possible causes for them. I am so afraid that she will get those words back and lose them all over again. Or that those words will never come. Even more, I am afraid that if she gains another skill, she will somehow have more to lose, heralding that awful disease that the doctors keep insisting she has.

I’m not even sure this makes any sense. I’m not sure how many more times autism can break my heart- I’m running low on super glue to piece it back together.

We go back to see two teams of doctors at the hospital on Friday. It’s one of those appointments where the hospital calls you to inform you that these teams of doctors want to see you at a certain date and time. Each time I see these doctors they tell me another horror story of how my daughter is going to regress and how she will likely die very young. Each time they terrify me. Each time I leave, teeth clenched to keep my lip from quivering. I go through the motions, more blood tests, get home from the hospital, feed the kids, put them to bed. Then I generally collapse on the kitchen floor into a puddle of tears. Then, usually about 2 months later, tests come back, and I find out that once again the doctors were wrong, or that the tests were inconclusive. A year and a half of testing, and still no solid results. But even that they point to as evidence of the more sinister syndrome that they suspect- some sort of mitochondrial disease that the tests really don’t reveal until about 5 years of age.

Why on earth do I keep going back? I ask myself that every time one of these appointments rolls around. It’s fear. I could stop searching. Unfortunately my background as a biologist and my overprotective maternal tendencies prevent me from quitting. There’s that chance that they might be able to find something that would give us an idea of how to help her in some way. Either something that could help her talk, or even something that we could do to keep from losing her forever. So on Friday I will go back. And I will likely leave, heart in my throat, terrified, but still holding onto my precious baby girl, who might just be almost about to start talking….again.

3 Comments leave one →
  1. December 7, 2011 7:11 pm

    It sounds like a pretty intense in a long, intense 26 months. Your mixture of skepticism yet perseverance seems really wise. Having the right answers, even if they’re ones you don’t like, are useful. I don’t think the doctors always understand that. Good luck this week and I hope you find a moment to take care of yourself.

  2. January 20, 2012 6:51 am

    Fearful Mother- please stay strong. I know this is easier said than done. I want you to know that you are not alone. Each time I take my son to an appointment I try to have my sister/best friend/ therapist on stand-by because she’s my safe place to fall apart.
    Please if you get a chance read my blog “Face the Fear” . It’s okay if you fall apart on the kitchen floor- it’s what you do after that counts. Good Luck With your little one, and many blessing. -Jackie

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