For all of my son’s life, I have had to learn to cope with and manage serious medical diagnoses. It’s not a life I would have imagined, but it’s a life that I am incredibly grateful for: my son is alive. He makes me laugh every day. He’s curious and helpful and kind. He is happy; we are happy.
But there are pieces of our journey that I find difficult. Mostly, I struggle with the anxiety of waiting for the other shoe to drop. We’ve been very fortunate in our journey – there is no doubt about that – but living in a state of almost constant fear and worry is a bad side-effect of having a baby born four months too soon. (Maybe moms of typical kids have the same anxieties and worries, but I have never been a mom to a typical kid, so I cannot compare.)
When Jax was born, they said he might have problems with his heart. And he did. When Jax was transferred to another hospital because of his heart, the ambulance had to stop on the side of the road twice so EMTs could give him CPR. He almost died and doctor’s were worried that he would have lasting brain and organ damage because he went without oxygen for so long. But, he didn’t die. He didn’t have organ failure. The other shoe did not drop.
When Jax was a bit older, they said he might have trouble with his eyes. And he did, and he almost lost his vision. But, he didn’t – he doesn’t even wear glasses! The other shoe did not drop.
When Jax had a hard time coming off the ventilator, they said he might have lasting trouble with his lungs. He does have trouble with his lungs, but it is fairly well-managed with daily medication. The other shoe did not drop.
Doctors said Jax might not walk or talk. I’ve lost count of how many hours we have logged with his physical, occupational, and speech therapists. But, he’s making incredible progress. He runs so fast that I can barely keep up and he speaks in 4-word sentences. The other shoe did not drop.
They said he might have brain damage because of his prematurity. An MRI of his brain showed a brain tumor instead. And for all intents and purposes, we got the best news we could have gotten about a brain tumor: we had the option to “wait and see.”
The other shoe did not drop.
This week, Jax will have his fourth MRI scan to check on his brain tumor. This time, they are also scanning his spine to check for more tumors and a tethered spinal cord. I should be used to the cycle of anxiety surrounding the MRIs by now.
But I’m not.
I talked to the pre-registration nurse at the hospital last week. As soon as I hung up, I started “going there.” Is this the scan that will bring bad news? How long can we push our luck? If Jax needs brain surgery to remove the tumor, will he come out of surgery a different kid? Will he still be happy?
So far, we have been so lucky. We have regularly gotten good news when statistics said we should get bad news. It’s like we’ve been winning the lottery over and over again. (SO GRATEFUL!)
But, is this the time the other shoe will drop?
Eventually, our luck has to run out. Doesn’t it?