My Roller Coaster Life – A Letter To My Kids (For Momastery’s Messy, Beautiful Warriors Project)

Momastery Messy Beautiful Warriors ProjectThis essay and I are part of The Messy, Beautiful Warriors Project.  You can read all the project entries here. You may remember that I met Glennon, author of Momastery and the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life.  If you don’t recall why she and a bunch of her Monkee followers think I’m bananas (Get it?  Bunch-Monkee-Bananas!), you can read about that here.

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 bad.  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.  Ahhhhh.  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 2 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 drives your teachers insane 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 butt 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 guys will be cranking out solid Cs.

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 Moms 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 few months 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.



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17 thoughts on “My Roller Coaster Life – A Letter To My Kids (For Momastery’s Messy, Beautiful Warriors Project)”

  1. I am completely speechless. This was stupendous writing. I wish you all the best and this was an E ticket Read so I hope you get a “FastPass” off the Ride as soon as possible. Blessings,

  2. This was absolutely amazing…. I live with Bipolar Disorder and all though I write about it publicly, I wonder frequently how I will explain it to my kids as they get older. I’m familiar with the ascents and descents you wrote about here… And it’s excruciating. Brain fog is miserable…. You are a strong, brilliant mom, and I love that you see the value in not bring a helicopter parent…. I’ve seen the same in my life with four kids, and chronic illness can be a powerful opportunity for our kids to grow independently.

  3. I really cannot even imagine. I think my own PUNY battles with hypothyroid and everyday things that come with all of that are difficult, and I have NO idea. You’re a great mom, your kids are obviously proof of that, and you’re always positive. Things that everyone struggles with, you handle like a champ. You’re amazing. You know this. May not always be comforting, but it’s a beautiful thing. I hope your roller coaster is a merry-go-round of rainbows and pastel horsies!

  4. When I was in high school and at an amusement park, the roller coaster broke while I was on it. It got stuck at the top of the first, big hill. Twice. Long story that ends in everyone on the roller coaster walking off the ride. How I wish this roller coaster you are on would just break so you could walk off of it.

    But, wishes do nothing, so instead I will pray for you. That your next ascent comes soon and lasts a really long time.

  5. Oh this made me tear up. I’ve been adjusting to life with rheumatoid arthritis and a stupid thyroid that doesn’t want to work right. I always feel like such a horrible mom because the energy just isn’t there to do all the things I want to do for them. This helped me to see the positive aspects that can come with illness. THANK YOU!!

  6. You are one amazing lady, you know that? I’m sorry you are going through what you’re going through, but your kids are lucky guys to have you for a mom. Sounds like they are pretty amazing too. Thank you for sharing this inspired writing. Big hugs to you.

  7. This is a beautifully written post–heartbreaking and heartwarming at the same time. Your children are lucky to have such an amazing mom. Thank you for sharing. Hang on–the next ascent is coming soon and will last a long time.

  8. I was really touched by this. I have narcolepsy and have a very difficult time explaining it to people because I “don’t look sick.” I keep attempting to write about it on my blog in hopes that people will understand me better as well as understand just how life as a narcoleptic really is. I love your style in writing this and hope someday, when I’m not too sleepy, I can articulate life with my disorder as well as you have here.

  9. So honest and true. Loved it. My mother in law had lupus and watching her fight was both heart breaking and inspiring. I bet your boys are right there I the ride with you.

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