Sunday, August 26, 2012

Update to Our State of Mind

Gili's first Walker - August 21, 2012
Two years ago today, I made a list of things I wonder about. Now I have some answers.

- Will Gili be able to be in a regular class when she starts grade school?

- Will strangers be able to tell she's "special" from her face? (I don't mean her sparkling blue eyes and infectious smile.)

- Do CMV babies live as long as other people?
No. See this thread from Facebook. Life expectancy of children with cerebral palsy is greatly dependant on whether or not they walk.

- How often will I be taking her to physical therapy and other types of therapy?
Thank G-d, I know longer have the shlep her around. She gets all her therapy during the school day. When she begins school next week she will have therapy, activities, and love until past 5pm most days. She also is provided transportation to and from school. How far we've come from when I started this blog!

- Will teachers or parents worry about her or my other children being contagious? Should they worry?
It doesn't come up much, but I use it as an opportunity to say, all kids of preschool age should be regarded as conatagious. Wash your hands.
 Will she get married and have a normal life? Will potential suiters consider her defective?
It is unlikely that Gili will get married and lead a "normal" life.

- Will she "catch up", we'll forget she ever had CMV, and this blog will be abandoned into the cyberspace abyss?
It doesn't look like that will happen, short of a great miracle. We'll take whatever little miracles we can get. I'm sure there are many miracles that I am unaware of that allowed her to even be born, and more that have allowed us to still have her in our family today.

If you'd like to skip to my first blog posts, check out the "In the beginning..." links in the right hand column.

1 comment:

  1. Thank you so much for taking the time and energy to keep this blog. I love your thoughts, questions, observations and honesty. My daughter has been diagnosed with congenital CMV and the information you share is meaningful to me on so many levels. Thank you again and God bless! You're an inspiration, keep up the great work.