Note to Self {The Day That Changed it All}

Dear Heather,

Your dad said it best. "It feels like this is all a bad dream, doesn't it?"

When you went to the orthopedic doctor for the first time today, you thought it was because one of your legs was shorter than the other. Your pediatrician sent you there because you've been having trouble walking, more than you should be, even with CMT. The new doctor suspected that it might be scoliosis, and had an x-ray of your spine done right there in the office. You went back to your exam room with your parents to wait for the x-ray to be read, and you could hear the doctors discussing it down the hall. The first hint that something was about to go wrong came while your dad was playing with a latex glove.

"Look at that spine!"
"Forget the spine! Look at those hips!"

Back to the x-ray table you went.

The rest of the appointment is a blur. You might remember the details now, but 12 years from now, you won't.

Today you were scheduled for your first major surgery, just a few weeks from now. You'll need at least three surgeries, the doctor said -- one for each displaced hip, and one for your spine. After those surgeries, you'll be able to walk without pain again. Maybe you'll even be able to run, for the first time in your life.

That isn't exactly how it's going to happen. What seems scary now is only scratching the surface of what the next few years will be like. You know this is a big deal, but your fears are about pain and the risks of anesthesia and starting middle school just weeks after hip surgery. The possibility of having to miss school is near the top of your list of concerns.

Things are going to get worse. So much worse. Your life is going to be forever changed, against your will, while you lie unconscious and unaware. You're going to grieve. You'll experience terror, denial, rage, and sorrow. You'll lash out at physical therapists, blame your parents, grow to hate God, and even consider suicide at the tender age of eleven. (I know, you think you're all grown up.)

What I wish you could know, throughout these next months and years of grief, is that after things have gotten as bad as they could possibly get, they're going to get better.

For years, you've stood by the fence during recess and watched other children play. You've dreamed of being able to run, and you imagine it feels like flying. You'll never know what it's like to run... but, thanks to the wheelchair you fear so much, someday you will feel like you're flying. That wheelchair will feel like shackles at first, but eventually, you'll come to see it as your wings.

Your childhood ended today. I'm sorry for that. But someday, years from now, you're going to find out that your life did not. It's only just beginning. And in eight long, painful years, you'll get a second chance to embrace it.

Thank you for hanging on through the storm. Thank you for surviving, one day at a time, and for retaining the essence of who you are. It's going to feel like a bad dream for a long time, but the best is yet to come.

Love,
Heather