You may just want to steer her towards non-contact sports…
Post date: Jan 11, 2012 6:25:15 PM
That was what her transplant team told us after we learned that she AGAIN had portal vein hypertension. That’s a fancy way of saying that she has a vein that is completely blocked off. This is nothing new. This is not an update…I’m just writing to explain how we take this knowledge, try to keep her safe and let her continue walking around and trying to live as “normal” a life as possible.
She could have a major bleed at any moment or not. She could live for a very long time (my eyes are looking up at you, Lord) with no complications.
OR things could go very shitty very fast.
This, my friends, is what living a life of faith is like. We must trust that we will get through each day. It helps giving it (the worry and angst) to God.
We can’t keep her wrapped in a bubble. Though, I would like to. Speaking of which, did you know that the “boy in a bubble” (early 1980s) ended up dying of the same form of lymphoma (PTLD) that Natalie had?
Back to my point…last night Natalie was at swim team practice. Lately, while she is at practice, I have taken up the opportunity to get a run in by running on the track in the PE center adjacent to the pool. Last night the 2nd graders had their basketball practices in the center of the courts that are surrounded by the track. Most of the girls in Natalie’s class have gone out for what was my favorite sport, growing up. And I watched as I ran. You see, I started basketball in 4th grade. It was the days before bitty-ball. I was the youngest on the team. Truthfully, they needed an assistant coach and my dad was recruited. My dad, the basketball star from high school; when I was young he pointed out the picture of him that hangs near the door to the gym of the high school that he attended. My dad, the high school basketball star; I wanted to make him proud. So I played the game.
I spent hours as a child practicing in the driveway. Practicing a perfect lay-up or free throw shot. I even won the Knights of Columbus 3-point contest one year. When you are slow and short you learn to make shots from the outside. I loved the sport. Until I didn’t. The girls got more aggressive as we got older. And they got taller as I stayed the same. And so I left the sport. But the love of it didn’t leave me.
And it was while I was running that I realized that Natalie will never experience it. Her spleen is large from the portal vein being blocked. It is large enough that the conversation was necessary. And her doctors said, “You may just want to steer her towards non-contact sports…” They try not to pull kids out of activities that they love; they try to let kids live their lives as much as they can. Their words “…that way we won’t have to pull her out of an activity that she loves when it gets too dangerous for her,” stung. Basketball was never too dangerous for me. And yet, I still quit. I quit to do other things, and stayed active in other sports, but at least I had the choice.
Natalie, someday you will read this. Someday I hope that you will understand how we agonized over trying to keep you safe, while at the same time allowing you to live. No one is going to throw an elbow in swimming. No one will shove you in dance. At least they’d better not (wink).
Your safety, your very life, is the most important thing. It is all that matters to us.