Superhero visit during Adelaide’s first inpatient EEG, May 2016

After a lovely day with friends, Miguel is driving our family down the I-90/94 interstate and Adelaide’s pulse oximeter starts alarming behind us. My eyes dart from my phone to a quick glance at the machine’s display which tells me that her oxygen rate has dipped below the healthy 90% mark and it is not coming back up. I unbuckle my seatbelt and climb into the back of our minivan and find her fast asleep. In an effort to get her breathing better, I try rousing her from sleep, squeezing her hands, talking to her, shifting her body back and forth. From the car seat next to hers, our son, Jackson, starts saying “Breathe Adelaide! Breathe baby sister! C’mon you can do it!”. A few seconds later she takes a deep breath and all is well. I hook her up to a portable oxygen tank and climb back into the front seat and resume scrolling instagram - as one does. Totally normal, right? No? Well, it’s our normal and more importantly, for the sake of this post, its Jackson’s normal.

I could easily write five posts, right now, about Jackson and his relationship with Adelaide. There can be something so - ugh, this is so cliche - but, magical about special needs sibling relationships. First, though, I need to introduce you to Jackson and his life because like everything else surrounding Adelaide, its complicated. For starters, Jackson is easily the most well-adjusted human I have ever met and contains more empathy in his first-grade being than most adults I know. As he should, I suppose, when at the ripe old age of six, he knows what seizures can look like, what an acceptable blood oxygen level is, how to turn off a feeding pump, how to silence the pulse ox alarm and how to push meds through a g-tube. He was three when Adelaide was born and four when she was diagnosed with epilepsy so he doesn’t remember life any other way.

Getting our battleship on with Daddy during an inpatient stay

I have to remind myself of that constantly: this is his normal, this is his normal, this is his normal. But, oh my gosh, it is so not normal. Thankfully, any time that we have needed to call an ambulance Jackson has either been at school or we have been able to distract him in another room. But that has not been the case for her seizures. He recognizes the tell tale sign of her scream as the seizure ramps up but, as I hold her and comfort her, he continues playing, drawing, watching whatever he has been - completely unphased. I remember one time he came into her room during a particularly bad seizure and he requested that I please get him a snack when Adelaide’s seizure was over. I told him I would, thanked him for saying please, and he walked out of the room - no sense of worry or alarm, the same as if Adelaide had been throwing a tantrum or I had been changing her diaper. I mean, our train left normal station a looooong time ago and there is no circling back.

Jackson, of course, doesn’t always take our challenging days in stride. The biggest issue earlier this summer was why Adelaide always got Mommy at the hospital and he had to have a sitter, “why can’t Adelaide have a babysitter at the hospital?”. Having a husband that works nights, with one child rapidly accruing frequent flyer miles at the hospital, definitely sucks for the kid left behind. I remind him that he has every right to be sad and angry but not at Mommy, Daddy, or Adelaide. We let him know that he can be mad at epilepsy, in fact, he can HATE epilepsy. Mommy certainly does. It is the only time he is allowed to say the word ‘hate’ in our home. Then we make sure to plan a special *Jackson* day, once we’re all home.

After a day of anger, fits, and tears Jackson has been known to turn around and shock us both. This past April, after listening to the song “‘Til The Calm Comes”, which Miguel wrote about Adelaide with all proceeds benefitting CURE, Jackson decided to write his own song about epilepsy: “so that the doctors and researchers would know they had to work really hard to get rid of all the epilepsy”. I’ve never shared this video publicly before but with Jackson’s permission I am sharing it here. The last 3 seconds are my favorite:

Written by Jackson at age 5

Watching the evolution of his understanding has been fascinating, heartwarming and heartbreaking. He still doesn’t get that she will never be a typical child. He will make comments about saving a toy of his to give to Adelaide “when she grows up”. I trust this will come in time just as his vocabulary has changed from her “brain checker” to an EEG and her “tummy checker” to a g-tube. We’ve kept him away from some of Adelaide’s more critical hospital stays but if we think she is stable (and its not flu season) then we warn him in advance of the various equipment and tubes he will see. Now they no longer bother him, he just crawls into the hospital bed with her and watches tv. Tubes at home or tubes at the hospital, she’s still his baby sister and at the end of the day all he wants is for her to smile. Me too buddy, me too.