Somehow, the medical descriptions of lissencephaly didn't phase me. I was able to discount all of the gloomy accounts of seizures and childhood death because I knew that Daniel wasn't a textbook description. He is a happy, responsive boy who is making strides with his motor skills and physical abilities.
Yesterday morning, after taking out the dog and before anyone else was awake, I did some searching for more personal accounts of kids and parents dealing with lissencephaly. I found a Web site that a family had done for their boy who lived until about 25.
The site had lots of photos of the boy when he was a baby and as he progressed through childhood.
I was shocked. The baby photos looked a lot like Daniel.
And as I browsed the online album, I could see how the cute little facial characteristics developed into what I can only call facial deformities: eyes fixed in different directions, buck teeth with huge gaps in-between. I also scanned the parents' account of how the boy became so large that they had to invest in an electric lifting device to get him up and down stairs.
I would post the link here, but I don't want to upset anyone else in the same way that I upset myself. I felt like I was looking into a crystal ball, like a vision of Daniel's life 2 years from now, 5 and 10 years from now.
Since viewing these photos and reading these accounts, I feel lots of bad and sad feelings. I would be devastated if we lost Daniel during childhood, but I am also devastated at the notion of how is life will play out.
What will he need? Will he be suffering? Will we be suffering? It's overwhelming.
At first, my reaction to Daniel's diagnosis was calm, cool, rational. I vowed to concentrate on how Daniel is doing TODAY and not worry about the uncertain future. When I stumbled on this family's Web site, I also stumbled in my convictions.
Now, I must work to get back to that place that I was just a few days ago. I know that coping with Daniel's disability will only happen if I approach it day-by-day.
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Hi Jase,
Just wanted to share some thoughts:
I think you need to expect that your resolve will slip - it is hard to take things one day at a time - we are humans with fears and disappointments that don't just go away.
One thing I particularly like about the "Holland" post above is the part where it says that we never get over our sadness about not going to Italy, but that does not mean we can't find joy in Holland. I like the way that analogy reminds me that this is not an either/or proposition. Those of us who love Danny will not EITHER enjoy life with him as we focus on his daily achievements OR worry about the scary possibilities of the future - we will do both. There are always potential dangers in the future - but when there is such a multitude of options it is almost easier to throw up our hands and trust to faith. But when the dangers take shape in specific ways (as they have with Danny's diagnosis), I think they take on a life of their own and have the potential to overwhelm our ability to enjoy the moment WHILE worrying about the future.
All of this is to say, give yourself some time to work out the balance. Maybe it will be more useful to not try to ELIMINATE but to CONTROL the grief and fear. In any case, I am confident that you will find the balance. I have known you for over 25 years, my friend and I know first-hand your strong capacity to deal with adversity. Danny is so lucky to have such self-reflective, strong, intelligent and loving parents. Rob and I were just talking about how much we admire you both as parents.
Love you,
Michele
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