Thursday, June 26, 2008

A Month To Two

It's just over a month until Jack's second birthday, and I find myself being a little weepy. And, no, not because he's my "baby" and he's growing up.

I think part of it is a release from all the stress of the last year. We thought he'd be casted for a year (coming up on the anniversary, just passed the anniversary of his diagnosis) and we'd be done. We thought, one year will suck, but then it'll be OVER.

It's not.

No end in sight.

No promise of cure.

A HUGE disappointment.

I feel angry, resentful, and flat out sad that this didn't work. I still have a glimmer of hope that I'm holding on to. But, the knowledge that this is "buying time" for our son is sick and wrong.

At a time when I would typically be a flurry of activity, planning a birthday party, I'm agonizing over the littlest things. I can hardly think about his birthday without wondering what his second year of life will be like.

I want to have a party that he'll love. I want it to be the BEST day for him. Because, frankly, he's been through more this year than is ever fair - especially for a toddler.

I know there are kids battling cancer. I know there are kids lost in accidents and drownings and all kinds of terrible tragedies. But that doesn't make this road any easier.

This year has been tumultuous, to say the least. We went from thinking he might have surgery to correct his curve, to learning the graphic details of what an internal support system would mean for him and instead turning our efforts instead toward casting.

We went from thinking this was a purely orthopaedic condition to learning that it can be life-threatening, that it can cause death in childhood. I remember reading websites about infantile scoliosis and seeing the pictures. I remember a little girl at Shriner's and I remember thinking, "Wow - she must have a lot wrong with her."

She didn't. It was just this.

I get so frustrated when people say, "Oh, yeah - my cousin/sister/aunt/daughter had that." No, they didn't. They had adolescent scoliosis and had a fighting chance. They were nearly DONE growing, not 10 months old with 17 to 18 years of battling this condition ahead of them - trying your damnedest to keep their precious internal organs from being crushed by their spine as they form and grow.


I wonder what his childhood will look like.

I wonder if he will be outwardly different, and worry for him.

I already ache deeply when someone comments about him crawling funny or that he doesn't have good balance. Innocent comments become painful reminders that he is not the same as other two year olds.

So, today, when I should be deciding what menu to have, sending out invitations, planning a celebration of two years in his life - I am reflecting and afraid to look to the future because it is so uncertain. Sure, all of ours are. I get that. But, today I cannot decide between a farm party or his newest love, "Memo, fishy movie," because I keep wondering how many birthdays we'll have together.



Walk a mile in my shoes.

I am strong and fight for him 95% of the time. We research until our eyes cross. We call and call and call and leave voicemails that are never returned. We drive countless hours, through storms and sun, with rising gas prices and financial strain, and sometimes, once in a while, we cry and say, "Why me? Why him?"

And, so, today, I will call the Neurofibromatosis clinic at Children's and schedule the appointment I have been dreading for weeks. Because his cast will only be off for less than a week, the week of his second birthday we will spend the day in a genetic disorders clinic finding out if the bump under the skin of is neck is a tumor. We will try to find some answers that we really don't have questions for. And, really, we don't want those either.

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