Navigating Parenthood When Your Child Has a Rare Genetic Disease

What I had envisioned to be a relaxing soak after a really hard week, turned into a sob-fest. The ten minutes of peace, alone in my tub, was the only solo time I had to myself; the only time I had to think and process the chaos. Sometimes, it’s just too much – the daily battle of my son’s rare genetic disease, balanced with the everyday routine of school and work. It can be a lonely place – a place where I have absolutely no control. I sit and I process and the tears flow.

I have absolutely no control.

My son takes medication three times per day for uncontrolled seizures. While I suppose I could set an alarm for medication administration, I don’t have any alarms set. I spend my days glancing at the clock and doing quick math problems to gauge time.

“Hmm. 11:16 AM. Okay, I have just enough time to complete this task before I have to give him meds, and then I can tackle xyz…”

I feel like I’m a hostage to this disease.

I can’t turn my back on him because he could seize at any moment. When he naps, I check his breathing due to my fear of SUDEP (Sudden Unexpected Death in Epilepsy.) When I need to leave the house, I have to prepare a checklist of everything he needs for the duration of time that I will be away and I need to be sure that his caregiver knows exactly what to do for him. Then, while I’m away, I’m consistently checking my phone and nervously.

Leaving him causes me the worst mom guilt ever. Every time I need to leave my son, I apologize. After all, today could be my last day with him and I chose to be somewhere else. I curse the disease even more.

I’m trapped. Tuberous Sclerosis has me hostage and  I can’t escape.

As the Elmo bubble bath faded from my room-temperature water, I started to think about places that are literally inescapable – like an airplane. That’s it! I feel like I am locked in an airborne vessel, headed to a destination that I did not choose. And in a time zone that leaves me forever feeling jet-lagged.

Feeling clever for a moment with my analogy, I remembered something that I read when my son was first diagnosed. Thanks to Google, I was able to recover the piece that had offered a unique perspective on our uncharted journey:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

I re-read these words, wiped my tears and pulled the plug from the drain. As I smeared the fog from the mirror with my hand, I reminded the beet-red reflection in the mirror that I am not trapped in a plane. And I am not a hostage to my child’s disease. And I am not overwhelmed by checking the time.

I am simply navigating a life on a new path. And if I let myself forget the original plan and choose the uncontrolled, less-beaten path, it’s actually quite beautiful here.

I need to let myself feel the freedom of embracing a new life. And I can do all of these things.

And I will.

In Holland.

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Grace’s unique journey has inspired her to speak from the heart, sharing her struggles and strengths. She is a domestic violence survivor and single mom of four, her youngest living with Tuberous Sclerosis. Despite these hardships, Grace always manages to find positivity and humor in life’s everyday challenges. When she’s not writing engaging and oh-so-relatable columns for The UpBeat, you can find her snuggling with her babies or constructing something fabulous with either a sewing machine or massive amounts of dough and a pie pan. 

  • Liz Ballantyne

    Loved reading this and love grace!!

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