When I Couldn't Hide My MS From My Children While on Family Vacation
Growing up, I sometimes got a little bummed that I was born five days before Christmas.
It felt like my birthday, compared to my brothers, was rushed and forgotten. I was never in school around my friends because it was already winter break. Often, we’d be on the road driving to see family on my big day. Then there’s the inevitable “combo” birthday presents wrapped in Santa Claus paper while “Jingle
Bells” plays in the background…having “Happy Birthday” sung to me kind felt like an afterthought.
Then, 11 years ago, my son was born on Christmas Day and I realized, maybe December 20th isn’t so bad!
My wife was also born December, so we’re both sensitive to ensuring our son still has his own special day to celebrate being another year older.
We know it’s a busy time for most people: It’s the last month of the year, social gatherings and parties, the malls are a zoo, UPS trucks are zooming everywhere, and it ends in a big bang on New Year’s Eve.
We never want his birthday to get lost in the holiday shuffle, or as we like to call it: Decemberfest. No, we don’t have that trademarked, but my wife does make commemorative T-shirts for the entire family – each new December.
On Christmas morning, we open presents and then celebrate our son’s birthday in the afternoon. We try to keep things fresh. Turkey, stuffing and gravy for dinner? Bah, humbug – how about homemade pizza instead?
This year, we decided to go on a family vacation to Colorado.
Since we live in South Texas, we felt like this was a great opportunity to show our children some wintry weather while enjoying a scenic backdrop of the Rocky Mountains.
We made this same trip two years ago and created many beautiful and memorable experiences.
And much like before, we had a magical time, a week filled with fun, laughter, plenty of Decemberfest worthy activities and even a few snow flurries!
But something happened on our trip that I didn’t expect.
I couldn’t hide it. I tried. But, on this trip, I just couldn’t hide my multiple sclerosis (MS) from my kids.
And that really sucked.
When I’m at home, I feel protected by familiar surroundings. If I’m ever not feeling well, my bedroom is never too far away so I can slip off for a private break.
Family activities are usually planned out and strategically orchestrated by my wife and I. Big events are preceded with and followed by plenty of rest. When it’s the summer, we venture out in the cool mornings before it gets too hot or before there are lots of crowds and lines. Long drives are kept to a minimum.
But, in Colorado, as our family shared one hotel room, I felt like all my magic tricks were exposed and my kids saw clearly what I normally try to keep hidden – my MS veil had been lifted.
It started with sleeping.
Bedtime is always difficult for me. I find myself in the frustrating paradox of being completely exhausted yet unable to actually fall asleep.
So, my regular nighttime ritual is to read, hoping to make myself drowsy before I drift off to la-la land.
And that’s what I did in Colorado. But…I had an audience. I’d catch my son, in his adjacent bed,
watching me struggle with restless legs and cold, achy limbs.
In his innocent eyes, I could see equal parts curiosity and concern. I realized he’s not 6 years old, anymore –I knew I couldn’t just say it’s an “adult thing” or gloss over my anguish. It had become obvious to him.
In the morning, a new struggle began as I attempted to get up. But again, it wasn’t the private experience I’m used to; rather, both of my children were watching, hearing how sore daddy was, seeing my lack of energy and struggles with numbness, spasms, tightness and even vertigo…
There I was, at a beautiful resort, surrounded by the majestic mountains – my spirit pleading to go outside and savor the crisp air, but my failing body was begging to rest.
Naps during the day became a regular necessity, except I didn’t actually sleep. I just collapsed on the bed, exhausted. I’d recover hours later, opening my eyes and wondering if I was asleep for days, or even weeks.
The entire trip I felt like I was under the microscope of my children’s sweet, beautiful and watchful eyes. I could sense their confusion and concern; I hoped they weren’t disappointed.
As they get older, they are becoming much more observant and it’s becoming harder to hide my MS.
Overall, though, I’m OK with that reality.
Decemberfest is more than just a month-long celebration, it’s a culmination of all that we’ve been blessed with each year; a reminder to live each day with love, purpose and passion.
MS isn’t my dirty secret, it’s part of my complete package. Our trip to Colorado was a rude awakening of just how quickly our family dynamic is changing.
But I’m ready for it, because my two kiddos are the best combo gift I could ever ask for.
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Gettyimage by: MarinaMariya