I was going through my emails, deleting old ones. I'm bad about this. I save emails. Ok, I'm an email hoarder. I admit it.
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.
Love.this.post! You made me cry!
ReplyDeleteOh, excellent, excellent post! What a wonderful lesson to have learned so early on!
ReplyDeleteBtw, I'm an e-mail hoarder, too, and I suspect that I may have those e-mails still from when Sammi was born. Hmmm...now I might have to go look for them! I get rid of nothing...
Yay!!!! Good for you! Isn't it crazy the things we hold onto and how we feel when we let it go. Or the searching we do only to find out we didn't need what we were searching for! Hmmmm...wonder what emails I held onto a year ago. Might be time to purge!
ReplyDeleteI talked to David too, in my 'early days'. I thought he was just as wonderful!
ReplyDeleteGood to know I'm not the only one : ) It felt good to let it go.
ReplyDeleteEmily-- Before I deleted the email, I sent him one to say thank you for all of his help. I haven't heard anything back yet. Not sure if he would still be working there after almost 2 years.
Beautiful post! Thank you for sharing David's email with us and you are correct. . . your experience with him showed that people with disabilities can be helpful, use a computer, communicated, etc. I love the photos too!
ReplyDeleteThis was really beautiful...It's amazing to look back and see how far we have come isn't it?
ReplyDeleteI acted completely opposite of you did in those early days...I didn't want to call anyone or find out any of the resources...A Nurse gave me some phone numbers to Moms she knew who had a child with Ds and I just tucked them away. I kind of shut down in the beginning. I wanted to know about Ds, but didn't want to go past that basic info. Our Hospital set us up with EI too, so that made things easier for me.
I just love the pictures of you and Kamdyn...They have so much emotion in them...They remind me of the early pics of me and Russell.