A letter to my kids: My Roller Coaster Life

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.  Reallllly 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.  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 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.

17 thoughts on “A letter to my kids: My Roller Coaster Life”

  1. You can whyme all you want. I truly feel for you. You have such strength and each time i do see you in person, you are always smiling and in good spirit. With all that you’re going through, you have been doing an amazing job with everything. You definitely deserve some daily dose of “cupcakes actually”!! 😉

  2. All I can say is God bless you Angela. In all the years I have known you, you never let the world see the pain you are suffering. You always seem to have it all together and be super mom, wife, community leader, room mom, and the list goes on and on! You are an amazing person! Hope you reach the top soon and hover there for a long time since you aren’t hovering other places!

  3. I will never leave due to your Whyme posts. Ever. In fact, while I appreciate your hilarity in your everyday posts? I also appreciate you sharing your real life and real issues and writing such an amazing letter to your sons. My dear friend’s wife has Lupus and another friend has Lyme. Neither are easy. I commend you for keeping your humor (because this was FUNNY) and for sharing. I think funny mixed with real is perfectly perfect. I hope you have some good days of untight harness-free soon.

  4. Did you purposely wait until I was on vacation to write every day? 🙂 So much to catch up on.
    While I do like to read your funny stories, I appreciate the Whyme posts just as much. I get to know you better, for one. And two, I completely understand the not wanting to discuss it in real life. People ask, “How are you feeling?” all the blasted time. While I know they ask because they sincerely care about me and my well-being, I usually just say, “fine”. I don’t want to talk about it. I don’t want to focus on it. If it’s really on my mind, I will write about it. Usually, there’s just nothing new to say. Keep writing whatever you feel like writing at the time.

    1. Christine! So glad you commented. 🙂 I always seem to read your blog from my phone and for some reason can’t comment on my phone (not just your website, I have trouble with some others as well). Thanks for the kind words. “Fine” is my go to response too. But truthfully this has been a worrisome year for me. 😛

      And while I’m able to “talk” to you, can I just say the seagull photo reminded me waaaaay to much of Alfred Hitchcock’s “The Birds.” 😉 Glad you had such a fun vacation!

      1. Oh, that movie gives me the heebie jeebies! How funny that the seagulls photo reminded you of it.
        I wonder why it works for some but not mine? Don’t count on me to ever figure it out. My computer skills do not include problem solving. I do appreciate you reading, though. 🙂

  5. I am new here, so I had no idea… what a wonderful letter to your kids. I am so sorry you have to go through this, but I agree with your comments about your boys. I am sure that they are stronger because of it…. and they are extremely lucky to have a mom like you…

  6. First, let me tell you that you simply ROCK. Second, I have a friend with Lupus who I am sending this link. She has two pre-teen kids and we were just talking about how they get it and yet they don’t.
    Lastly, don’t fire the editor. Because like I said, she rocks 🙂

  7. Just keep whyme-ing.

    Your resilience and strength of character really shine through in this amazing post. So sweet of you to include us all in your explanation to your kids, and WOW what an explanation. I feel I ‘get’ it a lot more.

    Keep up the good fight, and persevere, for perseverance begets character*

    *though you already have it in spadefuls.

    And thank you for sharing the (slightly) more serious side to your life.

  8. Ohhh hon please whyme all you want! As a fellow lupus suffer, this is my favorite post. I truly empathize with you and hope that you have more good days than bad ones. You may have found the second calling for you blog – and that’s to be the voice with humor of autoimmune diseases.

  9. Brilliant post Ang, and a great insight for us lucky enough not to be in your position (the Lyme/Lupus, not your boys!) about how this feels for you. Whoever your boys end up with will thank their lucky stars they were brought up by you – Banana Loaf, Peanut Butter brownies mmmm! Love from across the pond

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