To my son,
8 years ago tomorrow, my life turned upside down. The world of our family would forever ever after turn on a different axis.
On October 1, 2009, your daddy and I found out about your special heart.
For years, on October 1, I would write a letter to the doctor who diagnosed us (I say “us,” because although the diagnosis was yours, medical crisis never happens in a vacuum. Having a medically fragile child affects the entire family).
But somewhere along the way, I realized it wasn’t about him anymore.
It doesn’t matter anymore what he did or didn’t say in that dimly lit room, how many times he recommended termination, or how surprised he was that we were choosing to fight for you.
Yes, he was a part of our journey. He gave me empathy for newly diagnosed families. For me, he was my driving force behind starting Sisters by Heart.
But, for you buddy, and the path that you’re on, he just doesn’t matter anymore.
What matters is you.
Your love of life.
The whole of your amazing being that has absolutely nothing to do with your imperfect heart. Your silly personality. Your endless supply of love and hugs. Your big, big, big (and have I mentioned really really BIG?) feelings. Your comedic timing and well-honed sense of sarcasm, especially for a 7-year old. Your love of Legos, Star Wars and Hot Wheels. There is so much more to you than your heart.
Even so, the last year has been tough. One of the toughest in your journey to date. Your heart has been forced to sit front and center. I’m not going to lie. I am exhausted. Sometimes, the uncertainty of the path ahead is overwhelming. It’s hard to look down at your sweet face and not be resentful of everything you have to go through. I hope you know, your daddy and I would take this burden from you in a heartbeat. And if you asked your sister, I’m fairly certain she would line up to take it from you as well. Unfortunately, life doesn’t work that way. So instead, we stand beside you and cheer you on. And we research and advocate for you, to make sure you get the best medical care possible. And we embrace every moment we get as a family, doing normal family stuff. And yes, we make you do your homework. And your chores. And eat your vegetables. Sorry to tell you buddy, but that totally falls under the category of “normal family stuff.”
So today, on the almost 8th anniversary of your diagnosis, I have nothing left to say to the doctor who diagnosed you. But this, I have to say to you.
We love you so much. Your daddy and I have never regretted choosing life for you.
Not for one second.
You, buddy, were worth fighting for.
In that dimly lit exam room 8 years ago, and every moment since.
And every moment to come.
Don’t ever forget that.
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