It’s been one of those weeks….
Let’s see…
Tuesday was our big meeting with the Babies Can’t Wait lady. What a disaster that was! We met in this little conference room and she started out by saying that we were there for his 6 month review of services—which is where I started to laugh and said, “what services?” Then I remembered that I had prayed that God use His mouth, not mine (because we all know what would have happened if I told her how I really felt!). Of course, when I remembered that I just started to cry (another good trait, I know). She was asking us to fill out this survey about how often she should see Jack, and it made no sense to me. She really was basically trying to get rid of us I think. She thought she would only have to see Jack 3 times per year! I told her I didn’t understand anything that was on that paper and began to share what all had been going on since March. And I cried…. a lot. I told her how his therapy alone is $2700 per month! I told her how much money in medical bills we already have, and how I am scared that we are going to cap out our insurance. I told her how we can’t even apply for his Medicaid through Katie Beckett (this special program available to medically fragile kids that allows them to have both Medicaid and private insurance) because we STILL don’t have his social security number or a birth certificate. Then, when I was all done, she didn’t speak. Then, when she did speak, she basically just paraphrased what I said, and added, “is that correct?” to the end of her sentence. After almost 2 hours of this, we finally left—she is supposed to be looking for some place that will help us with our medical bills and trying to find me support. I guess she thinks I am crazy. She’s probably half right…….
So then today we met with Dr P the neurologist. There is both good news and not so good news. The good is that all of the metabolic and genetic testing came back OK. Nothing to shake a stick at. He doesn’t have a missing chromosome or anything like that. However, Dr P is not 100% sure that what we have with him now isn’t permanent. He may never eat or swallow or speak. He said the CP has affected mostly the part of his brain that controls the muscles in his neck and his legs. He was highly impressed with Jack’s ability to stand on his ankles! 
He said he has other kids who are similar and he can’t explain why some are affected so differently than others. He said he wanted to keep a close eye on him, and definitely keep him going in therapy…but they are sending me to sign language class and we are to start teaching him everything in sign language. So when we talk, we sign to him as well. SO…maybe he will sign MaMa before he says it! I’m trying to not be discouraged, but honestly, I am. And it hurts my heart a lot. No one understands how lucky they are to have healthy children until you have one that’s not. And then, you look at other moms (in the same situation) in the mall or out and about and you think “Man, I should go talk to her and buy her a coffee, I bet she’s having a day like mine…” and you see “normal” kids playing and laughing and Mom’s ignoring them, and you think—”Hey Lady, enjoy what God gave you and don’t take it for granted.” I don’t want to complain, and I don’t mean to, but I’m really quite tired. And really,today was just a not so good day.
He said he has other kids who are similar and he can’t explain why some are affected so differently than others. He said he wanted to keep a close eye on him, and definitely keep him going in therapy…but they are sending me to sign language class and we are to start teaching him everything in sign language. So when we talk, we sign to him as well. SO…maybe he will sign MaMa before he says it! I’m trying to not be discouraged, but honestly, I am. And it hurts my heart a lot. No one understands how lucky they are to have healthy children until you have one that’s not. And then, you look at other moms (in the same situation) in the mall or out and about and you think “Man, I should go talk to her and buy her a coffee, I bet she’s having a day like mine…” and you see “normal” kids playing and laughing and Mom’s ignoring them, and you think—”Hey Lady, enjoy what God gave you and don’t take it for granted.” I don’t want to complain, and I don’t mean to, but I’m really quite tired. And really,today was just a not so good day.
I’ll try tomorrow to have a sense of humor again….
More pictures…Jack, J and the geese (Jack couldn’t have cared less about them)—Yoda Jack—Janson’s school project (it was all made out of cotton candy—but it melted)–and me and Jack playing fetch.
One Response to “It’s been one of those weeks….”
Leave a Reply
Hopeful Friends
sending prayers and hugs for days like these!
love,
nessa
[Reply]