My daughter has a rare genetic disorder called Wolf Hirschorn Syndrome. Since it is rare, hardly anyone in the special ed community has heard about this. So when people ask what this is, I usually have to go tell them about the 4th chromosome deletion, what developmental delays are to be expected, and the list of complications that my daughter has.
When it comes to the part of saying all of the complicated things that Isabella has, I cannot help but choke on tears. Its just seems too much for a small 7lb baby to handle.
Last night when a friend and I went to meet a group of parents with special needs children, I had to introduce myself, and of course I have to go tell them about my 3 month old baby, and yes… the litany of complications. And just as expected, I found myself crying in front of people I just met.
For one more time I will list the complications that my daughter has… here they are.
Atrium Septal Defect
interhemispheric cysts in her brain
Sub arachnoid cyst in her brain
Mega cisterna magna
Partial agenesis of the corpus callosum
Wolf Hirschorn Syndrome
I'm just waiting for the seizures to start anytime soon.
As usual, I’m crying again as I am typing this.
However, this time I promise myself that this will be the last time that I will let my emotions take over me.