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To My Kids: It's Time for Me to Explain My Roller-Coaster Life With Multiple Illnesses

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Dear kids,

You know I’m sick, but we don’t really talk about it. I never want to worry you by telling you all the problems Lyme disease and lupus have caused me. But by not telling you, I’m probably worrying you more. So, let’s talk.

I’m sure it’s confusing for you. Adults don’t even understand the ups and downs, so I don’t expect you to. But I can try to explain a bit in terms you will relate to.

“Ups and downs” is the perfect way to describe it. Like being on a roller coaster. A never-ending roller coaster. Yeah, I know you are thinking “How cool would that be?!” But wait. There’s more. When you get on the ride and the harness clicks in, it is too tight. Way too tight. It hurts. Really hurts. You wave frantically and yell at the operator but he just smiles an evil smile and pushes the “go” button.

As the ride takes off, you try desperately to stop its grip on you. You squirm, you pull, you hit it. But nothing helps.

As you start to head up the first hill, the harness gradually loosens and by the time you reach the crest, it is finally comfortable. You think you can now relax and enjoy the ride. You get that moment where you are perched at the top of the hill. It is exhilarating and exciting. Time seems to stand still.

Then you start to plummet down the hill. You feel the harness begin to tighten again. It squeezes every inch of your body until you want to scream. It takes your breath away. Your head feels like it is spinning.

Just when you think you can’t handle any more, you begin another ascent. The harness begins to loosen again. Relief. Ahh. But this time you can’t enjoy it as much. What goes up must come down. And you now know that the coming down is excruciatingly painful.

This time when you reach the summit, you try to just focus on the joy of that moment. But you can’t because the dread of the descent weighs heavily on your mind.

Each plunge breaks your spirit more and more but after enough hills and valleys, you finally learn to get the most out of that time when the harness isn’t squeezing. You enjoy that part of the ride and look forward to the peak. Even though you know the ride can’t end at the top of a hill.

Then — just when you think you have a handle on the ups and downs – out of nowhere you get slammed with a loop-de-loop (or maybe I should call it a lupus-de-lup) which brings a whole new set of problems.

And just as the ride should be coming to an end, the operator smiles his evil grin again and it all starts over.

Add a blindfold so you can’t see the twists and turns coming and that, my dears, is Mommy’s life.

Not being able to get off of this ride makes me sad. Sad about all of the things I have missed out on with you guys. Like the many nights I missed tucking you in because I fell asleep on the couch before your bedtime. Or the days you had to wear mismatched socks because I hadn’t done laundry. (But two different socks seems to be all the rage now. You’re welcome, fashion world.) 

But before I make you sad, let me add that there is actually some good that has come out of me being ill.

I don’t have enough energy to be a helicopter Mom so since I don’t hover, you have taken off and soared. You are growing up to be incredibly mature, independent young men!

You all know how to do your own laundry. You don’t. But you know how.

You all know how to use the oven, toaster, microwave and blender. Greg, you have been able to fix your own lunch since you were 3. Eric, you can take an almost-rotten banana and turn it into an awesome loaf of bread. Jake, you are now our pancake specialist (and you even got me published in a book. Not for your culinary skills perhaps, but you’ve made many people laugh about what happens If You Give A Kid A Bag Of Pancake Mix.). Jimmy, you make to-die-for peanut butter brownies. No, seriously. Sometimes I’m afraid you’ll kill your brothers if they eat more than their share.

Although I’m sure it annoys your teachers that I am too foggy-brained half the time to make sure you get your homework completed, you are slowly learning to be responsible for getting it done on your own. As long as you manage to get enough homework turned in to actually graduate, you are going to be kick-ass college students. All those kids who depend on their parents to stand over their shoulder to study will be struggling not to flunk out, but not you guys. 

You all have compassion. You may fight like cats and dogs most of the time, but when I really need you to co-exist peacefully so I can rest you always seem to have my back. (Well, since our cats and dogs get along, I will say you fight like praying mantises — manti? — and stink bugs. I won’t say which ones of you are the stink bugs.)

And I have had to learn not to sweat the small stuff, which is a very good thing. I need all my energy for the big stuff, like making sure I take a shower at least once a week.

I’ve realized that the world won’t stop spinning because I didn’t get the sheets changed on your bed this week (or last, or the week before, or…ummm…you get the picture). Plus, I can tell you “good night, don’t let the bed bugs bite” with meaning. Psssh, no. Of course there aren’t really bugs in your bed.

As far as I know.

I’ve learned to appreciate the days I do feel healthy. Not many kids get to see their mom get downright giddy over feeling like a “normal” person for a day/week/month/however long it lasts. You have to deal with the lowest of the lows, but you also get to see pure joy at the highest of the highs. The times you get to see a glimpse of how I want to be all the time. The times on the roller coaster when my hands are up in the air and I’m shouting “Bring it on, world.”

Unfortunately, it’s been a while since you’ve seen my hands up in the air. Lately I’ve been hanging on for dear life while the coaster has been barreling down. It’s been a rough month summer year for my health. The squeezing of the harness is definitely taking a toll on my body.

But don’t despair. There has to be another ascent soon. There just has to.

Then I will be back to my uphill battle. And, in this case, an uphill battle is a good thing.

Follow this journey on Momopolize.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 22, 2016
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