A few years back, we went in halfsies on a boat with a friend of ours.
Now, when I say boat, don’t picture one of those shiny boats with fancy paint schemes and big speakers.
No, we own a 1970something boat. A rad boat that works like a champ. A boat that we don’t have to be neurotic about kids and sandy feet in. A boat older than us. That we own half of.
But it didn’t matter. Because we had visions of being the “lake family”. The family that spent weekends on the water. The family that tent camped constantly through the summers. With the kids that could wake board by their sixth birthdays. Babies sleeping in the cool shade to the sound of lapping water.
That was the plan. That was our little vision for our family. That was how we pictured summers.
Sun kissed babes and boat exhaust. Just going for it. Even if it was hours of work to get packed up. Because the return was worth the investment of hassle.
Enter a sweet girl with Cerebral Palsy…but more importantly, with a severe form of Epilepsy.
Sure, wakeboarding might not be in her future…and crawling around on a dirt floor might be difficult…but the real problem are her seizures.
You see, for the vast majority of people with Epilepsy, you just kind of wait the seizure out. It runs its course, and stops within a few minutes (2-15 minutes seems to be the norm), and the sufferer goes home to sleep off a gnarly headache. For the others, a dose of rescue meds stops things. It isn’t an easy or simple life, and I don’t want to belittle the experience that others have with the disorder, but by and large it certainly isn’t life threatening. (Please keep in mind that this is a gross generalization for the sake of quick background. If you’d like to learn more about Epilepsy, go HERE.)
For my little girl, while she doesn’t seize very often (she’s had a total of 5 in two years)…they are INCREDIBLY difficult to stop. While we don’t know for sure, we don’t think they would stop on their own (ever?)…and for us, seizures always mean a 911 call, a trip to the emergency room, MULTIPLE rounds of medications…and hours of seizing.
The shortest seizure Jill has ever had was 45 minutes. The longest lasted off and on for 3.5 hours. The paramedic was shocked when he asked…and admitted he had never had someone say they seized that long. He was used to people giving answers in the minutes…not the hours.
Long story short: Jill’s seizures are quite literally life threatening. She needs medication. She needs a lot of it. She needs it as quickly as possible. (The longer a seizure lasts, the harder it is to stop.) Seizures are a big big BIG deal for her. A scary big deal.
And so POOF went our family summer visions. We can’t be that far from a hospital. Even helicopter airlifts take way too long to get to most camping locations. It just wouldn’t be safe. The cost too high.
Luckily, we do have a small lake nearby that is close enough to town that we can sneak away to for the afternoon. It isn’t impressive, but it does the job when we need some time together and the warm weather beckons.
We packed up the brood, brought along cousin Nelle and Auntie Marcia (pronounced Mar-see-yah…not Marsha), and spent an afternoon playing and loving.
It was a nice getaway. The kids were angels. We all had fun. It was our family vision. For an afternoon.
We had just been down to the UCLA Epilepsy Center the Thursday before. Our neurologist had studied there, and she wanted a second opinion. A second opinion from world renowned pediatric neurologists at a world class facility. After all, “Jill is one of my top three most complex cases…I just want to make sure I’m not missing something. That there’s not something else we can be doing.” I love her humble spirit.
Down to UCLA we went, and met with a sweet man who I wanted to invite over to our house for a BBQ. God is so good to us. The resources we have available are overwhelming. I will never understand how He blesses us so consistently…when I am so consistently disobedient. Grace is an amazing thing.
So what did Dr. Nice Man have to say? Well, he wants more testing done. High end MRIs, PET scans, EEGs…24 hour monitoring…even on videotape…and hopefully even eliciting a seizure. Lots and lots of data on Jilly’s bitty brain. Data he needs to collect over a few day period…in the hospital. 2-4 days of 24 hour data collection.
From there, all of the testing will be reviewed. And we will assess the next step.
One of which could be brain surgery.
Not in my wildest dreams, friends. Not in my wildest dreams.
While the thought of my sweet girl having brain surgery makes me want to vomit…the truth is that if the result is Jilly living a seizure free life…well…where do I sign? Someone find me a pen…and then hold my hair back because I’m gonna lose my lunch.
Would it be horrific and possibly one of the hardest/worst times of this mama’s life? Yes. Yes it would. I cannot fathom the recovery from that kind of procedure.
But the pay off would be worth it. Tenfold.
For now, I await a phone call from the brainiacs at UCLA to schedule our few days of testing. It sounded like we would be admitted in a few weeks’ time. A nursing newborn will make my few days there…interesting.
I don’t quite know what the testing will show. I don’t know if surgery will be the suggested route. I don’t know what to expect exactly. But I do know that that sweet doctor said to Andy and I “You two have to mentally prepare yourselves for the possibility of brain surgery. But just know that often, when seizures are this difficult to control, and they begin so young…there is usually an underlying cause…that we can fix.”
I’m a mix of excited/nauseated/terrified/hopeful.
I’m anxiously awaiting that phone call. I just want it all over with. Whatever “it” may be.
But you know what?
God is good. Always. No matter what.
That’s about the only thing I know.