A Heavy Heart

You might remember the other mom I met in Chicago, whose son has been casted seven times. She's been a great shoulder to lean on and has really held my hand through this process.

Her sweet little boy likely has a connective tissue disorder, that causes his spine to continue curving despite best efforts. For more than a year he's bounced back, but went down when in the cast, so it was at least stabilizing him. Well, his Mom emailed last night and he is going to have surgery after the first of the year. I'm so heartbroken for her. His curve progressed in the cast. Even though the best person for the job performed the casting, his little body just found a way to go out of alignment.

As sad as I am for them, it also burst my bubble about Jack's casting. It's been a very hard seven weeks and sometimes I wonder how we'll get through it for a year. On those days, the thing that keeps me going is the knowledge that this is better than surgery - that after this year, everything will be over and done with and he will never have to have growth rods. The difficulty of these last seven weeks has been tempered by the fact that his curve went so far down. How have I disregarded the fact that we will not see improvement, but in fact, his numbers will be worse when we go in for his follow-up on Wednesday? Ignorance is bliss.

The email also informed me that our doctor is scheduling re-castings the first week of October. Even if that date is pushed back another week for us, that's so soon. I'm not prepared for that - emotionally, financially. I check the budget every day, trying to find more wiggle room, trying to adjust our spending, cutting our grocery budget, whatever I can do to make this happen and it's beginning to be a losing battle. I had to buy Jack a new carseat because he's on the very edge of the top of his straps already. His torso is almost 16" long in the cast, when you add in the height of his shoulder straps. He has to have something taller or he'll never fit in it when he gets re-casted. So, we had to get something more accomodating, and, of course, more expensive.

I'm feeling defeated, tapped-out. I'm not myself these days. The stress is taking its toll on us, and Jack not sleeping just makes the issue even worse. Last night he bounced from the side of the cabinets onto his face, flat on the ceramic tile. I can't see him hurting anymore. This is so unfair! What could he have ever done to deserve this? He's a baby. There is no sense - no justice - in this.