By ErinMayer on January 06, 2012
Featured Member Post
Sometimes when I look back on just how drastically our lives have changed since we found out Rowan has Lissencephaly, I'm amazed we've managed. Of course we had to first let the diagnosis sink in, which took quite a while for me. At first I remember not really believing it, I guess. And more than that, just trying so darned hard to not break.
Rowan was diagnosed on a Tuesday and I came back to work on Thursday of that week. I felt terrible for missing days only three weeks after I'd started in my role at The Forum.
Anyway, slowly reality crept up on me and I found myself crying at times I felt appropriate... In the car, mostly. I'd cry at home before bed, when I held him and saw him so fragile...
Today it seems a bit easier to digest; this huge life change. I suppose because he's doing so well lately.
Rowan has gotten so much stronger. He's holding his head up so well and loves standing up; with a lot of support, of course. I think he feels really good when he gets to use his muscles rather than just lying there.
He rolls over really well and isn't having any seizures at the moment. So, for the past couple of weeks I've been in bliss at the fact that he's not at the doctor all the time and seems happy.
Then yesterday we met with a respite nurse from Easter Seals. She's wonderful and we're so excited to work with her. But- we met with a respite nurse.
I just can't stop thinking about that fact. It's a good thing, don't misunderstand me- but again, it's just more to swallow and more to adapt to.
I assume this is how life will go.
Life is good- we're very fortunate. Sometimes, though, I just don't want to deal with the paperwork, appointments, diet, refills on prescriptions.
We need to think about our living situation soon, too. We're in a condo that has stairs going down to it. We'll have to try to sell that- at a loss, of course, because that's just how things are right now, and rent a rambler until Steve graduates from NDSU.
What's my point today?? I'm not even sure. I guess it's just a day to let things sink in and to remember that, in the middle of it all, we're very, very loved.
And both of my children were happy as ever this morning- which means we're doing a good job.
P.S. Guess who's going potty in the potty chair??
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