We had big plans for Halloween.
Grand plans...
Spooky plans...
Plans that absolutely did not involve a trip to the hospital.
And yet...
That is exactly where we found ourselves over Halloween weekend.
Despite the best of laid plans, that is simply what happens when you are the parent of a medically-complex kiddo. Sometimes plans change at the drop of a dime.
What was supposed to happen was a long weekend spent in my hometown. It would have been the first trip back "home" since our sudden departure from the area in 2019 to relocate to Seattle for the sake of proximity to medical care for our son.
We were planning to attend a Halloween drive-through event and stop off at some fruit stands. I had even registered Malachi for a Halloween-themed, flashlight egg hunt. That sounded super fun! Mostly, we were going to hang out and spend time with my dad, who we haven't seen much since the start of the pandemic.
But, as we were packing to leave, Malachi indicated that he was experiencing a good deal of pain, which soon became a very acute high-degree of pain, and then, a massive seizure that we were unable to stop with our home rescue medications. So, 9-1-1 was called and emergency crews transported us to a local hospital to stop the seizure. We were then transported again to Seattle Children's Hospital, where we stayed through the weekend.
Epilepsy is a really hard diagnosis.
Seizures are scary. Always.
It is traumatic to witness your child seizing, especially when it lasts a long time and you are unable to do anything to stop it.
It has only happened a handful of times in our home -- where the seizure did not stop -- but when it does happen, it takes me several months after the fact to relax again. It is acute trauma that you must deal with as a parent, and it takes a while. You must give yourself that grace to process those emotions and allow that anxiety to settle. It is challenging and unforgettable and, still, you must find a way to deal with it and keep moving forward.
Anyway, before that excitement, Malachi and I were planning a fun little family Halloween contest. Nothing big. It was just for fun -- something for which we could invite our close family to join. We even made a flyer because we are ALL SORTS of extra over here:
(Quite fortuitously, we decided on an overarching "purple" theme to support the Purple Pumpkin Project, an annual awareness-raising campaign of the Epilepsy Foundation. Learn more about the Purple Pumpkin Project here.)
We even went to the extent of creating rules for our family contest. We were going to open up entries for online voting to select a winner. There were deadlines set. The winner was getting a prize!
All of that...
And then none of it.
Instead, we spent those days in the hospital, talking with Malachi's medical team and making changes to the dosages of medications intended to control his seizures.
We never posted photos of our pumpkins or solicited votes or named a winner. At least, not according to the "contest rules" we had set. (It was a good thing the contest was limited to family members! They understand the reasons behind our perpetual tardiness and general lack of follow-through. It's all medically based. Usually...)
Instead, of the three submissions, Malachi chose the winning pumpkin.
Pumpkin #1, Above: Titled "Purple Rain" / Created by Malachi
Pumpkin #2: Titled "Party Pumpkin" / Created by Yours Truly
Pumpkin #3: Titled "Olaf the Purple Snow-Pumpkin" / Created by Oma (my mom)
And the winner is...
*Drumroll please**
.
..
...
....
.....
Olaf the Purple Snow-Pumpkin!!
Created and decorated by Oma Rita in Des Moines, Iowa
In disability parenting and medical caregiving, and in life, in general, things often do not go as planned. Sometimes that is disappointing, sometimes sad. It is entirely fair to feel those feelings. But, holding on to that disappointment for too long means that you also might miss the opportunity to pivot and make new plans that could also be fun. Different, but still a really good alternative.
In our lives, even something as simple as a family pumpkin decorating contest went a little off the rails. We couldn't even follow the rule we set for ourselves!
We can't even follow our own rules!
But then again, why should that be a surprise???
Our family life doesn't follow rules.
And rules are meant to be broken anyway!
There came an image of you three being in a 1950's Chevy Pickup, Rust-colored patina, Not 4 wheel drive, but chugging through the snow you go, shovels on the ready for if you get stuck, but chugging ahead, through drifts that stop you like cement, then lighten up through the fluffy stuff for a hell-uva fun ride, chugging on through storms and sunshine....