When Epilepsy Vacations with You (5)

“You learn how long 30 seconds really is, …when you are watching your child having a seizure.” – Epilepsy Meme

“Crying is how your heart speaks, when your lips can’t explain the pain you feel.” – Social Media Meme

It was our first morning in Give Kids the World Village. (To read about our arrival at GKTW and first night there, click here then here!) Pierson awoke early. The good news: his fever was lower and he seemed to have no other symptoms. The bad news: our children had been sleeping in the same bedroom, and Mercy could not re-settle after being awakened by PJ. It’s little things like this that I used to take for granted. Early waking on vacation used to mean the inconvenience of dealing with cranky, sleep-deprived children until their excitement overruled their fatigue. Now, as a parent of an epileptic child, early wakings precipitated hellish seizures.

I tried unsuccessfully to re-settle Mercy, but the petite mal seizures started within fifteen minutes of her waking, and began clustering in twenty. The combination of yesterday’s travel, the excitement of getting to the Village, the sadness over PJ’s surprise illness, and her seizing during our exploration last night took it’s toll with the early morning rise. There was no time to try protocols to prevent these seizures, and they were not the easily-managed type. During petite mal status clusters, Mercy loses consciousness with the world around her for 15-20 seconds at a time, per each single seizure. Her motor function freezes. Her breathing can be affected. She is unable to control her body and her mind in many ways. When the seizures cluster they pile – one on top of the other- for unrelenting time periods, with second breaks between them. When they aren’t stopped, they can trigger grand mal seizing.

On this morning, Mercy’s seizures were making her irrational, angry, and weepy, during the few seconds of break she’d get between seizures. She was fearful and suspicious. I held her when she’d let me, curled into a spoon beside her when we could get her to lie down – on the bed and on the floor, rubbed her back and hair when she curled into a fetal position, and spoke quietly. I administered one dose of rescue medication. For those who’ve not had to administer medication to a seizing patient: it is not pretty. In the case of petite mal clusters, it can be a lot like wrestling a large cat (panther), and getting the angry, scared feline to swallow a pill. If she was suspicious and angry before the pill is administered, you can imagine how things digress after I’ve forced her to swallow the first dose of rescue. Unfortunately, after waiting a reasonable time, I realized the first dose was not enough to stop her seizing, so I administered a second dose. This process is extremely physically, emotionally, and mentally exhausting for every member of the family, but most of all for Mercy and me. It took nearly an hour of this process before Mercy’s seizures slowed to the point that she could think her own clear thoughts and control her body’s functioning.

In the meantime, Dan and I had realized we were going to completely miss the breakfast window at the Gingerbread House, and our sick son had gotten some of his appetite back. Like happens so often at home, Dan had to be absent during much of Mercy’s clustering. Unlike at home, he was absent getting us all breakfast food, not working to pay bills. And this is why, as awful as this first morning was for us, it still felt somewhat like a vacation. Unlike at home, where I’d have managed the demands of a sick, hungry toddler and cluster seizing daughter by myself. Here, I had help. I had a husband running errands. I had a kitchen staff of volunteers loading up to-go trays full of gluten-free and dairy-free safe foods for our breakfast. I had a prayer chain network functioning in instant high gear. And, most of all, when the seizures ended, I wasn’t alone to put the pieces of our day back together by myself. Unlike at home, Dan wasn’t feeling helpless dozens of miles away as my phone calls or texts came in. He was there and able to act to help us practically.

Our daughter cried as she regained total consciousness, felt the fatigue in her muscles, and realized how her first Wish Vacation day was starting. You can take a Wish Child on vacation, but their illness won’t stay home. Epilepsy vacationed with us. I cried with her, because a parent of a special needs child only has three choices: be the stable wall, be the friend, or be the coach. The moment to support her with level-headed medical care was past, and now Mercy needed a friend who could mourn her loss with her. As I held her, I wondered how many other parents in the Village were holding a sick and discouraged child this morning, and I knew that, here, we were not alone.

Tears spent, we cleaned up, got dressed, and walked out to a fully-plated breakfast for kings, prepared by angels.

Mercy after a cluster
Although this picture wasn’t taken that day at GKTW, this is typical of Mercy’s feelings after surviving a cluster of petite mals, or a grand mal.

 

(***Author’s Note: Epilepsy is officially, medically described as a “disorder”, rather than an “illness”, “disease”, or “sickness”, because it cannot be transferred from one person to another or “caught”. It also cannot, yet, be cured. However, in the same way that cancer can not be transferred or caught, and is still thought of as an illness (although, it can sometimes be cured), I use those terms throughout my blog for the ease of the reader and to relate our daughter’s life experience to the experience of other suffering, Make-A-Wish children, in terms most people relate to and understand.)

How about you? Do you have a child battling epilepsy or another chronic condition? Do you battle one yourself? What challenges do you face when vacationing? Share a vacation memory with me below!

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5 thoughts on “When Epilepsy Vacations with You (5)

  1. Thank you for putting this into words and bringing us into your experience. For us vacation means unfamiliar physical space that brings paralyzingly anxiety and ugly dysregulated behaviors. The change in routine is met with fear and resistance and the desire to control and sometimes sabotage. Going to the same destination has helped ease this some over the years and I am so grateful for the progress when I look back. I pray you have a day when you can look back and think on how far things have come.

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  2. Ruskiwi, your honesty with your experience over the years has helped me be a better observer of families around me struggling with life issues similar to your own and to view the inscrutable behaviors of children I don’t know through a compassionate lens. I’m so glad you can look back and see progress made from years of work and love. Prayers answered slowly. I know you press on in your own difficult fight to the hope of even brighter days.

    For me, when I look back, I see years of our hard-fought-for progress stripped in a single instant, ballooning into years lost, by the relentless progression of epilepsy. For that reason, until there’s a cure, I’ll never look back without dread of epilepsy’s random recurrence whenever and wherever it pleases. I do look back – with hope and nostalgia- to the vacations we had when epilepsy was temporarily tamed, and look forward to being in that position again.

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  3. I wish we connected in a happier note but I found your blog because I too, am also a Mom to a little boy with epilepsy. Love your words and how you are spreading awareness. Our sons forst seizures were triggered by lack of sleep (and vacation- twice) so I completely relate to your sentence about early wake-ups previously meaning a cranky kid, and now mean the trigger for seizures. Stay strong, keep sharing and be well!

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  4. I wish we connected on a happier note but I found your blog because I too, am also a Mom to a child with epilepsy. Love your words and how you are spreading awareness. Our sons first seizures were triggered by lack of sleep (and vacation- twice) so I completely relate to your sentence about early wake-ups previously meaning a cranky kid, and now meaning the trigger for seizures. Stay strong, keep sharing and be well!

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  5. My daughter is now grown, but we ‘joke’ that we owe her another whale-watching trip in New England, another trip to the Shedd Aquarium in Chicago, and a multitude of do-overs that seizures and memory loss have stolen from her.

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