Getting back into the normal swing of things is pretty difficult. Yesterday afternoon Jessica asked Namine if she wanted to go out for ice cream, sure that the answer would be a resounding “yeah!” But to her surprise, Namine said no. “Why not?” Jessica asked. Namine responded, “Ha-ha! Eye meam!” She didn’t like that I wasn’t with them, and she didn’t want to get ice cream until I got off of work. When Jessica told me about this, I was touched.
Oh, in case you’re wondering, that picture is Namine enjoying a quesadilla. (Is that spelled right?) Apparently, she likes sour cream.
Sometimes Namine acts like a normal two year old. She has temper tantrums – and her “no” is resounding and loud – and she plays with her toys. She can be selfish and totally unwilling to share, like any little kid. But so often she shows something deeper; a maturity, I think, an evidence in her personality that she is a kind, gentle, and caring person. She will, totally out of the blue, offer us food (and not just something she doesn’t want to eat, but also a favorite desert) or a toy. She will lift up one of her dolls or stuffed animals to herself and hug them, holding them lovingly to kiss their legs and feet. (That particular act, which I have seen numerous times now, breaks my heart every time.)
You see, Namine is in constant pain. I don’t think many people register that, because she doesn’t show it. But her feet – particularly the right – hurt all the time. Even when her braces hurt unbearably, her first reaction is not to cry. She will merely tell us, “Bray aw!” (Braces off!) and point to her feet. When she asks for her braces to be taken off, we know enough is enough.
And here we are, looking toward summer, with the prospect of causing our baby girl more pain. Oh, she can handle it, I’m sure. She handles everything we’ve put her through, and with amazing resilience and determination. But that’s not the point – I don’t want to. But she has more issues that need dealing with; the hernia and the g-tube need to be addressed.
I’m sure you know all about the g-tube. Namine doesn’t use it anymore, and it needs to go. But like the trach stoma, the opening has built up too much scar tissue, so all that needs to be surgically removed. Then the hole can be stitched closed, and recovery begun. But even for such a seemingly small thing, we don’t know what the recovery time is going to be like.
The hernia, on the other hand, is another matter entirely. We know recovery is going to be bad, because we’ve been told so by doctors. Namine’s intestinal hernia is caused by her lack of an abdominal wall; they aren’t just repairing something damaged, they have to built where there is nothing. We’re probably looking at a solid week in the hospital, if not more.
Because Namine is healthy again, we feel we can finally schedule these procedures, and get the ball rolling to get them over with. Of course, we’ll let you know when the scheduled dates are, when they’re set. In the meantime, please keep Namine in your prayers.