I wrote this yesterday (and then edited it a bit today), and I thought I'd put it here so I'd have it forever. But also so it may encourage, uplift, and support other parents who are in the same amusement park I've been in for the last almost twelve years as the mother to two children with mitochondrial disease, a chronic and life-threatening genetic condition my husband and I unknowingly passed on to them. Yes. We have it too.
When my youngest son was born and we were still in the hospital, but he wasn't eating right and sleeping too much, the neonatologist in charge of his care told me that just because his brother was sick didn't mean he was going to be. That, frankly, I couldn't live my life waiting for the other shoe to fall. He told me he was the healthiest baby he'd seen that day, one of the healthiest in the hospital.
He was wrong on both accounts. Jonah was not healthy, and since his birth, I've been praying that the other shoe doesn't fall. And when you do that, you're inevitably waiting for it to fall--living in fear that it will.
One time, in a mito group, someone compared being a special needs parent to being stuck in an amusement park. You're at a park with your friends. Sometimes, you're on rides that make you so sick. You can't wait to get off them. You have a few moments in between rides where you recover. Then, you're right back on another one. It might not be as bad as the last one, but it tosses you around. You might even lose a shoe on the calmest, most soothing ride—the swings—because even that one takes you high in the sky, you know you eventually have to come down because the roller coaster is next. You're high for a second, unsure of that exact moment when you'll reach the peak, and then all your hopes free fall in a split second.
And as if that isn't bad enough, every so often, one of your friends leaves. Their ride is over. Their child is gone.
So, regardless of how horrible some of these rides made you feel, how many times you lost your stomach, you get back on each of them over and over again, praying you never have to leave the park like your friends. And that hurts like hell.
You feel like you have to live for them as well as for your kid, so you put your hands up in the air as you climb that hill on the roller coaster. You're scared because you know so well that the fall comes next, but you still enjoy every slow notch. You soak in the beautiful view from atop of the world. You scream and smile when you go down it even though your stomach lurches and you may swallow back bile. On the Tilt-A-Whirl, you hold on to the side so you don't smother the other person. You try to protect each other, to cherish what you have. Every. Single. Moment. And you hang tight to that one shoe you have left, hoping it never falls off.
Because the park has one of those signs that says no entry without shoes. But you're already in. So what happens if you lose them while you're there? Will they kick you out? Will they loan you a pair?
The unknown is the scariest part. And each ride has an element of that. The whole park does.
I don't know if this is any comfort. But you're not alone. Remember, there are lots of friends in your park. Sometimes it may feel like they are playing hide and seek. There are games there. People do have fun. You'll make new friends too. Even when you can't see them, just promise to remember they're probably just on another ride. Or they may be losing their last shoe. Find them, hug them, help them, love them. <3
When my youngest son was born and we were still in the hospital, but he wasn't eating right and sleeping too much, the neonatologist in charge of his care told me that just because his brother was sick didn't mean he was going to be. That, frankly, I couldn't live my life waiting for the other shoe to fall. He told me he was the healthiest baby he'd seen that day, one of the healthiest in the hospital.
He was wrong on both accounts. Jonah was not healthy, and since his birth, I've been praying that the other shoe doesn't fall. And when you do that, you're inevitably waiting for it to fall--living in fear that it will.
One time, in a mito group, someone compared being a special needs parent to being stuck in an amusement park. You're at a park with your friends. Sometimes, you're on rides that make you so sick. You can't wait to get off them. You have a few moments in between rides where you recover. Then, you're right back on another one. It might not be as bad as the last one, but it tosses you around. You might even lose a shoe on the calmest, most soothing ride—the swings—because even that one takes you high in the sky, you know you eventually have to come down because the roller coaster is next. You're high for a second, unsure of that exact moment when you'll reach the peak, and then all your hopes free fall in a split second.
And as if that isn't bad enough, every so often, one of your friends leaves. Their ride is over. Their child is gone.
So, regardless of how horrible some of these rides made you feel, how many times you lost your stomach, you get back on each of them over and over again, praying you never have to leave the park like your friends. And that hurts like hell.
You feel like you have to live for them as well as for your kid, so you put your hands up in the air as you climb that hill on the roller coaster. You're scared because you know so well that the fall comes next, but you still enjoy every slow notch. You soak in the beautiful view from atop of the world. You scream and smile when you go down it even though your stomach lurches and you may swallow back bile. On the Tilt-A-Whirl, you hold on to the side so you don't smother the other person. You try to protect each other, to cherish what you have. Every. Single. Moment. And you hang tight to that one shoe you have left, hoping it never falls off.
Because the park has one of those signs that says no entry without shoes. But you're already in. So what happens if you lose them while you're there? Will they kick you out? Will they loan you a pair?
The unknown is the scariest part. And each ride has an element of that. The whole park does.
I don't know if this is any comfort. But you're not alone. Remember, there are lots of friends in your park. Sometimes it may feel like they are playing hide and seek. There are games there. People do have fun. You'll make new friends too. Even when you can't see them, just promise to remember they're probably just on another ride. Or they may be losing their last shoe. Find them, hug them, help them, love them. <3
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