Feb 1

Feb 1 Cautiously pessimistic

1/30/2019 Notice anything different about this picture? Something missing?

If you’re reading this then you likely already know that CURE launched our Seizing Life podcast this week with yours truly as the host. #Sorrynotsorry for inundating your social media feeds. In some sick twist of events, on the same day we released the podcast episode about how we keep our relationship strong while being married with a child with epilepsy, I had a meltdown about the parenting responsibilities that comes with caring for a child with epilepsy aaaaand blamed it all on Miguel. I felt like my life was not my own and that I was being held hostage by her care. These feelings were in no way foreign - as I’ve mentioned in the past I seriously struggled with my role as a stay-at-home-mom/nurse/therapist/pharmacist. But it’s been a long time since these feelings reared their ugly heads. Guilty mom disclaimer: Of course I love her and of course I enjoy caring for her, but it is a relentless job - she has developmentally been a newborn for three years requiring constant care and it’s entirely possible that she is not going to “grow out of” this phase. Even with all the support in the world, her over-all care is a solo task that can be very isolating.

Once my sanity returned to me, I tried to figure out why in the world the feelings had bubbled up with such a vengeance - I’m talking about full on resentment toward Miguel because he can come and go from the house as he pleases, he isn’t constantly aware of the time of day and her corresponding medical needs and he is able to go straight to bed without a 20-minute routine consisting of prepping Adelaide’s meds, overnight feed and bi-pap machine. I had long ago moved past these feelings because we established our roles in Adelaide’s care: we determined that it really was more cohesive and safer if this was one person’s responsibility and all I ever had to do was ask him for help when I needed it. My rational mind knew that my resentment was not his fault. So, why now?

Perhaps it was because our nurse had not been able to be with us much the past week due to illness and antarctic temperatures, and as a result, I was back in the saddle full time. But that alone couldn’t be the reason for this sudden sense of desperation, after all, over winter break I managed her care solo for two weeks without pause. Disappointment perhaps? Wednesday, I was supposed to fly to Washington DC to speak at a conference for the Undiagnosed Diseases Network. The polar vortex had other plans and, after my flight was rescheduled and cancelled for the fourth time, I devastatingly relented. Yes, I was looking forward to speaking with clinicians and researchers about Adelaide and making valuable connections. But mostly I was looking forward to a break, to two nights in a hotel room where my time would be my own. Now, regardless of whether you have a special needs child or not, I imagine you can relate to this desire for some extended adult time without being incessantly relied upon by another human being.

I’m sure all of this played into it, but today, the true culprit finally came into view as I watched Adelaide breathe on her own with near perfect oxygen saturation for the second day in a row. Yeah, you read that right. On Wednesday, for the first time in over four months, Adelaide did not require the additional assistance of her oxygen concentrator. With the exception of a couple hours, there was no nasal cannula taped to her face, no alarms going off due to oxygen desaturations, just very normal breathing. I should be elated right? Beside myself with the joy. Instead I found myself anxious and emotional because I am terrified that this is the calm before the storm. Is this real? Will it stick? I try and just enjoy the moment but my PTSD won’t allow that. Nearly one year ago to the day I was telling friends at a Super Bowl party that Adelaide was making improvements, that she seemed to be engaging more and that I was optimistic about the direction we were headed. The very next morning she suffered an acute life threatening event (ALTE) where she stopped breathing, her heart nearly stopped, her lips turned blue and her skin white. I looked on in a hospital trauma room as doctors worked to resuscitate her, intubate her and used epinephrin to get her heart going. Just hours before I had been hopeful for her development and now I was just hoping she would survive the morning.

Since last year’s Super Bowl I haven’t been able to tell anyone that she is improving. Not just out of fear but because she has steadily regressed month after month: we lost what seizure control we had, witnessed increased lethargy and respiratory issues and that resulted in her inability to eat by mouth. Flash forward a year to today, and just two weeks after one of her worst respiratory weeks ever, seemingly out of nowhere, she is breathing without assistance. So yeah, please forgive me if I’m a little hesitant to celebrate and if instead I’m waiting for the next ALTE all while having a meltdown in which I blame my husband for not being supportive enough even though that couldn’t be further from the truth and resenting him for his incredible job that literally pays every bill. Adelaide’s improvement has caused my own emotional regression. How’s that for a messed up inverse function? (Side note: I’m not actually smart enough to know that the criss-crossing lines on a graph is called an inverse function. However, I was smart enough to google what a criss-crossing graph was called). Is being cautiously pessimistic a thing? I’d love to be optimistic about this new development but realistically I need to be on alert and selfishly I need to protect my own emotional health. Who knows if this respiratory improvement will last. Honestly, I was hesitant to even write about it because, like I wrote in “How’s Adelaide Doing?”, there’s a good chance that someone will follow up with me next week and I’ll have to tell them that she’s back on oxygen AND THAT SUCKS. But maybe she won’t be. Maybe.