Ohhhh, those suhhhhmmer niiiiiiiiights, July 2019Photo credit: Jenny Lane — Ohhhh, those suhhhhmmer niiiiiiiiights, July 2019
Photo credit: Jenny Lane

These last couple weeks have been emotionally challenging and not for any one specific reason that I can determine. Don’t get me wrong I have laid in bed, stood in the shower and gotten lost in thought at a red traffic light coming up with all sorts of reasons that my heart is now paying rent to my throat. Could it be the increase in her seizures? Perhaps it’s that I am living in constant anxiety of the next round of whack-a-mole? Maybe I’m just hormonal? Or, is it that I came off my Zoloft for a week while I waited for the new prescription (I do NOT recommend letting your Rx’s run out)? Then there is the fact that it’s summer. The winter holiday season is a well-known anxiety fueled host serving up a feast of emotional booby traps. But maybe not so well-known, is that the summer season offers its own delightfully debilitating fare.

I miiiight be a touch stubborn and while I acknowledge Adelaide’s disabilities I try not let them stop us from participating in life’s adventures. Summer, though, presents challenges in that many of the adventures take place outside. If we’re going to be gone for the day without access to an outlet then how many oxygen tanks need to come with us? Were her pulse-ox and feeding pump charged overnight? Is the destination wheel-chair accessible? What will the temperature be? Like many neuro-kids, Adelaide, has poor temperature control and can overheat easily which is, surprise, surprise, a seizure trigger. Also, how far will we be from home or the hospital should there be an emergency? Given Adelaide’s current condition, I’m not comfortable going more than 20 minutes from home with the kids unless there is another adult with me. During the rest of the year there is structure and routine, upon which we thrive, but summers are free-wheeling and spontaneous - two things Miss A does not do well.

King of making-it-work, seen here wearing Adelaide during a round of mini golf 2 yrs ago that was not accessible. August, 2017

Three years into this journey and I still have to remind myself that there are some things we just can’t do, no matter how much planning I put into it. For example, going to a beach or park without accessible AC. It’s just not fair or safe to put Adelaide’s body through the stress of the elements. But it can be hard to acknowledge this on a group text with other families planning an outing. I want to go, I want to be invited to go, but deep down I know we can’t. So, I compromise and send Jackson with friends so he doesn’t miss out and start to resent his sister all the while I’m worrying about being an absent mother.

Then there are moments when I surprise myself, like this week when I was able to wrangle two mom friends and their children to join us at an outdoor music concert 30 minutes from home. With their help we loaded Adelaide’s equipment, multiple bags, our picnic dinner, blankets and SIX CHILDREN into two cars and enjoyed a gorgeous night outside, chatting, eating, playing Uno, listening to music and making beautiful summer memories. When we made it home I felt so accomplished that Miss A, Jackson and I had been able to attend without any major issues. Yes, we had a lot of stuff, required a lot of help and lucked out with perfect weather - but we did it! So there are some activities that we can’t do with Miss A but there are many more that we can. A shift in perspective goes a long way.

Which is what I am reminding myself of today as I’m getting our family ready to head to Michigan for a two week vacation. This will be the longest Adelaide has ever been away from home that wasn’t a hospital admission. Granted, we are only going a two and a half hours drive away, it is still quite an undertaking and one that is leaving me simultaneously thrilled and terrified. Due to a communication error with our nursing agency (deep breaths, deep breaths), we’re not sure if our nurse can join us on vacation at all and if she does it will only be for the last four days of the two week trip which means that yours truly will be fully responsible for Miss Adelaide. Cue hyperventilation.

A bug on the beach with her dog… before oxygen was a daily accessory, August, 2018

We will be in a lovely air conditioned cottage steps from Lake Michigan with all the electricity we need to keep Adelaide comfortable. This is probably the safest and most accommodating vacation we could take with her. Yet, the thought of managing Adelaide’s care 24/7 for 2 weeks is looming VERY heavy on my mind. The things is, I know I can physically do it, its the emotional aspect that has me in hives. Clearly, I am madly in love with my daughter and would go to the ends of the earth if I thought it would bring her a better quality of life. But it won’t. No amount of cuddles, singing or caressing calms her when she is upset. I have to assume that our presence helps, that knowing she’s not alone makes a difference, but she is unable to provide any outward sign to say so. We do everything we can to prevent seizures, but they still happen. I can stick like clockwork to her med and food schedule and she still experiences discomfort. I love spending time with her, reading, singing, snuggling but it is emotionally draining to care for someone you love but cannot soothe, let alone clearly communicate with. Physically caring for Adelaide is the “easy” part - maintaining emotional stability without regular time away from her is pretty darn close to impossible. I’ve had the hardest time putting this into words. How awful does it sound that I’m anxious about spending continuous time with my daughter? So, I’m trying to take my own advice and change my perspective: instead of anticipating the emotional challenge I’m trying to focus on the precious time that we will be able to spend together and the memories we will make. I’ll be sure to let you know how that works out. In the meantime, my personal vacation packing list looks something like this: