Respite & Reentry

Mark was diagnosed at the end of January of 2015 and by May of that same year, Ike was on a plane with Mark to California for a visit at the Brain Treatment Center with hopes that a cutting edge magnetic brain treatment would be the ticket. They spent two weeks in southern California at a treatment facility. This was “our” vacation that year, despite the fact that I stayed home with Jillian. The following year we made the trip to Chicago to attend the first ever Family and Professional SCN2a Conference. We spent two days immersed into everything SCN2a, research, meeting SCN2a families, and understanding others challenges. It was a lot. It was overwhelming, and it was our only vacation. So this year when we received an invitation to my cousin’s wedding in Florida, we decided to make it a real one, a true get away, from the kids and from the craziness of our SCN2a/autism/special needs world.

 

I spent the entire week leading up to our trip making meticulous lists about the kids routines, foods, preferences, sleep schedules, songs for everything, videos and photos of lunches packed and teeth brushing and potty routine captured, even creating a “Mark Cheat Sheet” with suggestions of things to do when he melts down for seemingly no reason. My house was cleaner than it been in an embarrassingly long time, and our fridge and pantry were well stocked. Clothes were planned and laid out for the week. Things were as I wish they would be when we are actually here.

 

As we began the 14-hour drive, it took me several hours to just relax and stop worrying about what I forgot to explain. I needed time to acclimate and not feel guilty letting my guard down, eating without feeding someone else and having a conversation without being interrupted.

 

We spent almost a week away from the kids and aside from checking in on them we completely unplugged from everything. No social media. No email. Minimal texting. And no color run site checking on registration numbers. We spent our time talking, eating, visiting with family and just existing without the pressures of rigid routines and communication breakdowns. Even just after five hours in the car, somewhere in North Carolina, I felt ready to return to the kids and parent better. I really didn’t need a ton of time, just a few moments outside of work, parenting and sleeping to clear my head.

One of the many highlights of our trip was our breakfast at the inn where we stayed on our way to Florida. It’s possible that the food was part of what made it so memorable. Best blueberry pancakes ever.  Thank you, Rhett House Inn.  As we looked out on the water of the bed and breakfast in South Carolina, we took our time to talk through our parenting challenges with both kids and came up with sound solutions that were thoughtful and not hurried like usual. I couldn’t wait to go home and hug them.

 

We went to the wedding, made a couple of quick trips to the ocean to breathe in that delicious air and soaked up the quiet that was devoid of our usual household reverberance. We spent time talking about us, and our relationship apart from the kids. Our jobs. This baby. All the small things that we never have time to pass along to each other. We listened to podcasts that we love, like the Moth, and The Way I Heard It, and just shared space together, something that is incredibly hard to do in this phase of life.

 

 

My sister and her boyfriend stayed with us during part of the trip and we rode back home together. Maybe it’s a sibling thing, but Paige makes me laugh harder than anyone else, so much so that my sides ached by the time we got home.I don’t even remember why, but at some point on the drive home, whatever she did kept me from unintelligibly communicating what was so funny to Ike and Jacob. I was relaxed enough to laugh, hard and it felt good.

 

 

At the end of our six days away we returned home, to two very well cared for children, thanks to our parents who took on the burden of getting them where they needed to go while dealing with blown snow, night wakings, structured routines and constant two-hour snow delays. I walked in the door and Mark was in a tired, inconsolable heap on the floor of the dining room. Of course, this didn’t happen at all while we were away, he fell apart right before we got home. Sheepishly I had hoped that he would notice that he hadn’t seen us in a while and run to us, but not today. He was feeling feelings I didn’t and still don’t understand. So I came in and sat on the floor with him, scooping him into my lap and hoping that my embrace would provide some sense of familiar comfort that he may have missed. As the night went on, we were both painfully reminded of what we left behind and what we were reentering. I want to make it clear, however, our life is not miserable, at all.

It is just difficult in a lot of physically, mentally, and emotionally draining ways, yet rewarding and gratifying in ways unimaginable outside of the world of special needs.

For the first time in two years, by taking our vacation, we both took off the heavy yoke on our shoulders for a few days, and somewhat successfully forgot about the gravity of its weight. And when we returned and the yoke was replaced, it was even heavier than when we left. We had grown used to the pressure and the weight, and having it gone, and then returned without gradually working up to it, was burdensome.

 

Without skipping a beat I was back to emailing our neurologist with concerns about Mark’s night waking and potential connection to seizure activity. I was launched back into the decision about Mark’s schooling for the summer and fall. I attended an advisory committee meeting at the board of education, reminding me how terrified I am for Mark to enter public school, and the next day took Mark to a new provider for a speech evaluation. We began trialing a new probiotic to help with the bacterial overgrowth in Mark’s stomach to help end his relentless diarrhea. And we began our quest to find funding for a fence for our yard because it’s getting warmer outside and Mark is getting stronger and faster. And I tormented myself by checking our color run registrations and frantically trying to think of ways to get more runners interested. All the while we were both trying to catch up from being out of work for a week, drowning in email and trying to pull it all together without falling asleep at our desks.

 

It was a tough week, a vivid reminder of what our life is like and a complete smack in the face after the blissfully carefree days we had away from it all.

 

We needed the time. We needed to sleep, time to reconnect, to be reminded of what life is like away from the chaos, and an opportunity to miss that same chaos back at home.

 

And then Saturday night happened. Mark sat in my chair at my desk, looked at my desktop background of our family picture, pointed to himself and exclaimed, “that’s me!”.  Ike stopped what he was doing and stared in disbelief at the back of his head as he continued to point and say “me!” and then point to Ike in the picture and say  “big!”. Pointing is new. Speaking is scarce. He’s worked on photo recognition for six months, and his own picture was the last for him to recognize, and certainly he’s never recognized it out of context of school or ABA.  So this was completely out of character and the blue. And there it was. Why we do what we do. Every last struggle is worth it. Our sweet boy is in there.

 

We’re thankful for the chance to unplug but we are also equally as thankful that we are headed into week three of our return, our callouses are beginning to reform, toughened up from the weeks before and ready to do battle once again knowing that we are fighting for a little boy who, for a moment, could tell us that he recognized himself in a photograph.

 

Ike wasn’t able to get the “that’s me!” on video, but he got a few “me’s” and a “big!”