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Why I'm Telling You About My Medically Complex Children

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Right now, my boys are sitting at our hand-me-down dining room table playing on computers that educate them during the school year as online students.
They are building and designing games on Roblox Studio. Together, they’ve created a group where they assign tasks to members. They pay people to do jobs they haven’t yet learned to do themselves with the Robux they save each month from their games.

They apply rules to their group, moderate the members, and set training sessions to teach those members how to contribute to their little world.
My boys are happy, well adjusted, and thriving despite their life-threatening diagnoses. They are very much like your children despite the feeding tubes currently infusing hydration into their bellies, the CPAPs they use to breathe when they sleep, the oxygen that supplements the air they inhale, the wheelchairs they use to navigate long distances or times when they are required to stand for extended periods, despite many medications that help their bodies perform basic tasks like digesting their food, and despite the immunoglublins that cost thousands of dollars a month that provide an immune system so they can actually go in public without getting sick.

Why am I telling you this?

When I had my oldest, Noah, I thought my life would be filled with play dates, birthday parties, seeing my child in the hall at the school he attended and I taught at. I imagined vacations to the beach in the summer, the mountains in the fall, and watching my husband coach his Little League games with weekends spent watching Tennessee football on top of ‘ol Rocky Top as a house divided (Go Gamecocks!)

I never imagined I’d become so skilled I’d be teaching nurses strategies on how to tape GJ-tubes to prevent them from being pulled out or telling doctors which gauze causes the least amount of granulation tissue around a stoma. I didn’t even know what a stoma was. I dropped biology in college in favor of plant science. It was the last class I took before I student taught, and I took it a semester all by itself after I’d had Noah so I could have more time at home with him before jumping into my career. I remember talking to my professor about how sick he was, and him comforting me that he’d be OK.

Why am I telling you this?

Twelve years into being a mother, I have learned to fight like I’ve never fought before — and also learned way more biology than I ever imagined. See, when everything is so out of control — when you lose the ability to tell your child they will be OK, when they ask you if they’re going to die from their disease and you don’t want to lie, but you don’t want to tell the truth — you learn to fight for cures, and awareness, and a way to distract them. When they can’t play Little League and have to see life and Rocky Top from afar, when you have to tell them no Tennessee football games because of their health, you find new dreams to replace the old. You fight to make all the wishes come true.

You especially learn to fight when you have go neck and neck with doctors who think they know your child better than you.

Doctor: Well, he looks great to me.

Me: Smiles and nods while thinking, “But you just met him.”

Fighting is taken to a whole new level when the people who should be on your side, who should value your opinion and trust you can’t get past their ego, and you can’t fight them because they hold all the power over whether you take your child home. Knuckles get bruised when you attempt to educate a school about your child’s disease, but they’re unwilling to learn — when they refuse to provide even basic services, like making sure they don’t accidentally kill your child while he’s there for a few hours.

You develop this hard shell of an exterior like a turtle. You learn that slow and steady wins the race, but you wish you were a rabbit because you’re tired and wonder what it’d be like to have a little extra energy. You know if you poke your head out too far, you could get hurt. Sometimes it’s just easier to stay inside where it’s safe, where no one judges your speed, your fights, your advocacy, your children, their disabilities, your parenting. Should I post this to Facebook or write it in a journal? Will they judge this?

Why am I telling you this?

Because despite all of these things, my kids are sitting next to me on computers thriving. Do you know why? Because the state of Georgia and the federal government recognized this is the best place they could possibly be — with people who love them, in a home they call their own, doing all the things they are able to do — not focusing on the things they can’t. They recognized that doing this is cost effective for the state and federal government. But more than that, they recognized that my children are worthy of a life — of breathing air, digesting food, playing games, laughing, learning, and loving others.

We are barely able to stay afloat. There are so many costs Medicaid doesn’t cover monthly that we gladly foot the bill for because we love our children, and there’s nothing we wouldn’t do for them. But without Medicaid, there’s nothing we will be able to do for them because we wouldn’t be able to afford it.

My children meet institutionalized level of care. That means if we can’t care for them at home, their needs are extensive enough that they’d need to be in a nursing facility. Even with our care, the state just approved them both for 40 hours each of home health nursing in addition to what we provide. That is their level of their care. Not a personal care assistant. Not a CNA. The state of Georgia has approved an RN to be in our home for 80 hours a week in order for them to get the care they need while continuing to thrive, to live as full of a life as possible.

So I just want to say that I hope when people think about where they want their tax dollars to go (or in this case not go), they think about my children playing on their computers, beating odds, and thriving while doing so. It’s because of Medicaid that that’s the case.

Don’t be fooled into thinking the AHCA gives the states more freedom. It doesn’t. It’s basic math. Less money = less services. The first to be cut will be the ones who need it the most. The people who abuse the system will always abuse it. The people who use it honestly will always be honest. We are the ones that will suffer. My children’s lives aren’t a line item on a budget. They’re not a negotiating point. Don’t tell me this is about government conservatism. The only things I’m interested in conserving are their lives, their ability to sit at my hand-me-down dining room table wiggling in my chairs while playing their games.

The only worry I should have right now is whether they’re going to break those chairs, not whether our country is going to break us.

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Originally published: June 12, 2017
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