bad week venting

So Nora hurt her knee....well technically we hurt her knee.  She hurt her right knee a month back and we just immobilized it and in a week, it was good as new. It's her left leg now that hurts.  She in quite a lot of pain if it's moved the wrong way.  There is a slight amount of swelling but nothing to indicate a serious fracture.  True there might be some small fracture which I learned from the SMA conference is very common in children with low bone density.  Regardless if it's a small crack in the bone or if it's just a pulled muscle, the treatment is the same.  Keep it immobilized, control the pain, and wait for the body to heal itself.  As she gets bigger moving her is becoming more difficult.  Her floppy arm and legs are harder to control since they just dangle.  If you lay her down wrong or too quickly one of her arms can easily break.

So there's that, and both Jaime and I are ultra low on sleep.  We were excited about pictures which that got rained out, the new portable Pulse Ox was supposed to arrive on Wednesday and didn't.  All of this in the same week, is enough to put a small crack in the dam that holds back the flood of sorrow and anger.

So I'm watching a movie with Nora tonight doing Chest PT and it has a scene where a mother was getting her daughter ready for her suiters.  ....it was Disney's Mulan.  It is just crushing to think Nora will never have any of that.  If by some impossible miracle she lives into her twenties, she will never leave home or find love.  It gets really hard to look at your daughter and know that you will never see her walk down the isle... or even have a wedding.  I will never know what she would have looked like as Nora the woman....or even the awkward teenager.  These thoughts seem to creep back in again during difficult weeks which only adds to the funk.   Being the parent of a terminal child, forces you to keep focused on only today...on right now.  It hurts too much to look beyond that.  That's what I think I wished people understood.  They look at their children and see a future of almost endless possibilities - and some even take that fantastic gift for granted.  Can anyone really truly empathize with how much effort it takes every second to try and NOT think about the LIFE SMA steals each day from Nora.  I'm so angry with SMA.  I can wait for my mind to patch that little crack that is letting these thought seep in.

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