I spent Monday and Tuesday trying to track down the actual report, they hadn’t sent it to her doctor and after every appoint out here in the satellite office, they transport all of the charts back to Children’s downtown.
I was finely able to get them to fax them out here to our doctor and since I had to take Amélie in anyway, it ended up working out well…two days and 20 phone calls later.
As I was driving to the office, I remembered a conversation I had had with a friend about six months after CoCo’s big adventure. It was a very lonely and frustrating time for me. I was here with three kids, on my own. I was having issues revolving around my oldest and I had this baby that I felt was not quite right, and I wasn’t really comfortable talking about it to most people.
But on this night, I was up chatting with a friend. We mostly talked shop, music, and pop culture. Well this late night, they said something like, “no, really what is going on?” and I proceeded to list all of the reasons I felt like maybe some was wrong with her.
“She crawls funny.”
“I had a nephew that crawled like that too.”
“She isn’t walking yet.”
“My nephew didn’t walk until she was 18 months.”
“She isn’t even trying to talk.”
“My same nephew didn’t talk until he was 3.”
I went on to name a few more things I was seeing as developmental red flags. And like a good friend does they continued to reassure me that, it was fine, she was fine because their nephew had followed almost the same developmental path.
“Maybe I am just over reacting. Maybe I am just paying too much attention because of the seizure, or something? I’m sure your right I feel much better now.”
“Yeah, I am sure that is it…oh….” And then, “…………”
“What?”
“…”
“No, really, what?”
“Um…..never mind. Now that I am talking and thinking about it…that is my nephew who has Cerebral Palsy”
I laughed Hard. Really, really hard. I mean I laughed like somebody who hadn’t laughed in six months. I so needed to laugh at cerebral Palsy that night and I did –like, only somebody who has already accepted the truth can.
I got in the car yesterday, I looked at the envelop. I had been told, I thought why look? Because I am me I had to see it for myself that is why, so I open the envelope, and I looked at the report. I skipped to the end and there it was, impression: Borderline Developmental Delay / Static (not going to change) Encephalopathy (brain damage). I have to say that seeing it in black and white did feel weird, but honestly I just keep thinking how lucky she is…borderline, and very lucky.
She walks, she talks and according to her she has “super powers”, Yep, lucky girl.
