The Bruised Heart

Yesterday felt like a week.  It contained probably a week's worth of emotion, if not more.  You see, we had Hillary's IEP (Individualized Education Program) meeting in the morning, and finally got her new wheelchair in the afternoon.

The IEP meeting is a yearly event, and generally things go well and while it can be intimidating to sit down with the teachers, therapists, and caseworkers who work with your child, it's usually not bad for us.  This year Hillary's school case manager is out on maternity leave so there was someone else  covering for her.  Someone not quite as kind, and someone whom I suspect doesn't understand why we would want a child like Hillary in the public school as opposed to a special school.  She obviously doesn't believe Hillary can understand anything judging by the things she was saying right in front of her.  As if it's not enough that I know there are only 2 more years before she will be finished with school and then--well, that IS the question!  Without getting into the details of the meeting, I'll just say that I am very glad our state caseworker was there to fend off the suggestion that in one year Hillary could start attending a medical day program a few days a week instead of school every day.  Yes, that is one of the suggestions the fill-in school caseworker had.  Even though I'm glad the state caseworker didn't agree (thus lessening the burden upon Bruce and I to shoot that down) she also made some suggestions that left me feeling bruised.  I know that they are good suggestions, and she made them for Hillary's benefit (and for mine) but oh how they made my heart hurt just to consider them! Because there are so many emotional ramifications involved in implementing them.  I am still reeling inside from that meeting.

The wheelchair delivery was a happier event.  This is Hillary's 5th wheelchair and probably one of our better experiences with the process.  This new chair fits her much better, and fits our house much better as well!  Looking at her in the new chair and then looking at her old chair, it hurt my heart to know that she spent the better part of 5 years in a wheelchair that was too big for her, and didn't seat her properly.  How uncomfortable she must have been so often and rarely did she show it.  It makes me wonder how much progression of her orthopedic problems is due to the bad seating, and how much it had to do with some of her diminishing capabilities.  We can only hope now that with continued physical and occupational therapy we can reverse some of the problems and prevent or slow down the progression of others.  It's good to see her in her new chair looking so comfortable.

Those are the reasons for my bruised heart.  There is no cure for the bruised heart, no over the counter pill or cream to ease the pain.  Only time can diminish the pain, help the bruises heal.  I will always be vulnerable to those bruises, but such is the risk to the heart when we love a child.