This past November, we spent six days in the Epilepsy Monitoring Unit (EMU) over Thanksgiving exploring our son’s new epilepsy diagnosis and trialing a treatment. Here I share how we survived our six day inpatient stay in the EMU at Johns Hopkins. Though really, this could be useful for any parent facing a hospital stay …
Last night while I stood in the laundry room folding a load of clothes that had been de-wrinkled at least three times, I heard Ike go down to the basement where Mark was hanging out to give him his nightly Valium. I didn’t hear the usual clicking from the hand counter and constant music from …
At some point during the early days of the pandemic, I found myself endlessly scrolling through YouTube looking for videos about service dogs; particularly those featuring children who resembled Mark. I needed to understand how a dog could bond with a boy who had zero interest in relationships. And I found proof, lots of it …
I was standing in my kitchen, cutting an onion when Luke came around the corner of the island and handed me two small Play-Doh containers to open. I dutifully dug out the half hardened contents and handed it back to him as he scampered off to return to his mission. As I watched him run …
Yesterday I woke up relieved that it was Friday. We had made it; we survived the first week of virtual learning, and then I realized that it was Thursday, and we still had two more days of this torture. I, like many other parents of students with IEPs, have watched our children struggle in frustration …
Many people are being forced to choose between going back into their workplaces, which feels pretty unsettling after we’ve all become accustomed to sheltering in place and walking away from careers that took years to build. The health and safety of our families are paramount, but our ability to earn income to support them is also crucial. These two things are being treated as if they are mutually exclusive, and for many, they are not.
For me, the weekend away was not about the ability to sleep longer if I wanted, or to have an extra scone or a homemade pop-tart the size of my face, though I did, it was about finding exactly what I needed, which was clarity and peace.
Respite wasn’t what I thought it would be. It was much more. It allowed me to see that self-care isn’t about finding strategies to escape the present reality, it’s developing ways to improve the current conditions by establishing healthy boundaries and making choices with the intention of well being.
And so with that, I’ve given myself permission to say no, to step back and to regroup. I am forever grateful to the ladies that shared this sacred weekend with me, for Andrea’s vision brought to life, and for the ripple effect that her generosity of spirit, time, and money will go for years to come.
And then one night toward the end of the trip, we decided to build a fire on the beach. We took all the chairs, supplies, and the kids, and trudged across the dunes to our spot. We fully anticipated that one of us would need to be on guard with Mark ready to sprint. And once again, he surprised us. He sunk down into a beach chair, buried his feet, and relaxed as he listened to music and the ocean waves. Not once did he bolt or panic. I kept tearing up as I looked at each of my family’s faces and took pictures, trying to savor and cement this moment forever. I needed to relish in the fact that I wasn’t yearning for anything more. I wasn’t sad that Mark wasn’t interacting with us in a typical way, or that he didn’t care about seashells or ghost crabs. No, I was blissfully enjoying the gentle-spirited boy who God created, rather than the neurotypical boy that I used to wish for in his place.
I think that we could learn a lot from our friends with autism and what works for them. I think we may find that we don’t cope much differently and can respond to the same steps used to address the anxiousness that we are feeling as we begin to transition back into a world filled with Plexiglass shields, mask requirements and one way directional flows.
On Thursday night I flopped into bed after one of those days that just didn’t start well. We had overslept, scrambled, took showers throughout the morning between meetings, the luxury of working from home I suppose. It was just one of those days, and we could all feel it, especially Mark. As I laid in bed, …