The day Kamdyn's pediatrician said the words, "The results are positive for Trisomy 21" (cue puzzled, what's he talkin' bout look on my face) "That means Kamdyn does have Down syndrome" (while passing box of tissues), and after I cried and called my mom, I decided that I was going to find anything and everything out there that was available to Kamdyn.
Unbeknownst to me, the hospital had already submitted our information to our local Early Intervention program, so that was one call that I didn't need to make. I'm sure it took some in depth deductive reasoning skills to figure out that this name they already had was the same wackadoo that called again and set up yet another interview. And if I had thought about it, I probably would have figured out that someone from Early Intervention had already called me. But, at the time, I was all about being thorough. I was going to call E-V-E-R-Y number I found. Plus, I was calling so many people and being transferred so many times, that I didn't know who I had spoken with anymore. The term Early Intervention made about as much sense to me as the Chemistry class I took in High School (squeaked by with a D. Yeah, me.)
And when someone called me up and said, "Hi, I'm Mrs. What's Her Bucky from yet another agency. We need to schedule a time to come to your house for an evaluation of your daughter", I really don't even remember if I knew what I was signing her up for. I just knew we were getting somewhere now. It's funny now to think back at how clueless I was.
Every other place that I called said I should sign her up for Early Intervention, and they should have everything covered. Ok, I did that, but there must be more, right? I mean, that can't be it. Turns out, that's it. And after hours of phone calls and being on hold, I had it figured out.
One of the people I contacted was a sweet man named David from some kind of disability council. I called them all, so who even knows now, but it's one of them. David, himself, had some type of disability. His speech was slow, and he stuttered. The words seemed difficult for him to get out. Being new to this whole realm of disabilities, I found it odd that they chose the guy who had a speech difficulty to answer the phones. Now, I look back, and that one phone call taught me so much. When David emailed me back with the resources I had requested, he wrote, "Congratulations on the new addition! It was a pleasure speaking with you the other day," followed by a list of every disability network, parent support group, and agency I could possibly need, most of which I had already called, of course.
Now, almost 2 years later, I'm glad I spoke to David. I'm glad that I learned that someone with a disability can be helpful. They can be smart. They can use a computer. They can have a meaningful conversation. And they can tell someone "Congratulations" when they have mostly been hearing "Sorry". I've been looking at that email at the bottom of my inbox for almost 2 years now. I thought I better save it, just in case, being the email hoarder that I am. And it was also a little piece of those early days. A little reminder of the place I was in.
Do you know what I've found out in these last two years? I've learned that Kamdyn doesn't need whatever I thought I was searching for in those many phone calls.
She needs me to clap for her when she succeeds.
She needs me to hug her.
She needs me not to compare her progress to other children.
She needs me to stop worrying.
She needs love.
I opened up that email. I smiled. And I deleted it.
Just one more step in the right direction.
