June 17, 2012 was a Sunday. Since they had pushed my release date back to the 21st, we had asked Dr. R to give me a day pass for the Sunday before. Matt and the boys would pick me up after church in the morning and bring me back to the hospital by shift change at 7:30pm. The nurses dressed me and I think someone even tied a scarf on my head.
I had amassed quite a collection of scarves and head coverings, but I rarely wore them. My PT Cheryl was the only one who could tie it really well. I was hopeless. Even as I began to get the use of my left hand back, it wasn’t strong or coordinated enough for fancy knot-tying. Also, I had this strong aversion to wearing them because I felt like scarves screamed “CANCER” and that was not my battle. I believe I wore one to church when I was first released, but otherwise I mainly wore a hat that my friend Sharleen (at least I think it was Sharleen) sent me from Minnesota. It wasn’t fancy, but it felt more like “me.” Sharleen . . . now there’s a friend I could have used as I tried to readjust to life “on the outside.” I sometimes think that, if Sharleen had still been here, I might have been able to more successfully navigate the mommy-friendship waters.
Anyway, back to June 17th. They had given us a very strict protocol to follow for my day out. Avoid public places as they tend to be overwhelming. I was not to be left unattended. I was to use a wheelchair to get from the car to the house and back again. We had actually practiced the “car transfer” on Friday with Cheryl and that was definitely the hardest part. Getting out of the wheelchair and levering myself into the vehicle was immensely difficult. It still is two years later, even though I am long out of both the wheelchair and the AFO. If someone sees me park in a handicapped spot and wonders what the heck someone my age is doing with a placard, the question is answered as soon as they see the sideshow that is me entering and exiting my vehicle. During my second round of outpatient Rehab that I underwent a year ago, I worked really hard on this particular skill, but it still ain’t pretty.
With the help of a nurse, Matt got me loaded into the car. Then he got the boys loaded and buckled. Then, we were off. “We have to stop by Wendi’s house first, I have to return her cooler from when she brought us dinner,” Matt said. Errands already? I guess that’s one step back to normality! My friend Cindy had set up an online meal delivery site for me and people were bringing food for us every weekday. As anyone who has been in this position knows, you always end up with an odd assortment of dishes and containers.
Wendi’s house was right in Clintonville, right where we were hoping to move, right between the hospital and our current house. Sigh. This would have been a heck of a lot easier if I had gotten the brain tumor AFTER we moved! We stopped at Wendi’s and she came to the car to say hello. Wendi is the portrait of Scandinavian efficiency. I don’t know her well enough to know whether her ancestors were pioneers, but if they weren’t, they should have been. Wendi doesn’t waste time worrying and brooding, she gets things done. As she was chatting with us, we explained that I was on a day pass and she said “I remember we did that a couple of times with S.” Her son. Holy crap, I know I’ve been out of it for a while, but how did I forget THAT? Wendi had lost her eldest son to leukemia about two years prior to this. I wish I had known her then. I wish we could have offered her family a meal and small comfort during a terrible time like they did for us.
With me now in tears (not a difficult feat either then or now) at the memory of a boy I never met (not unlike the Angel I Never Met), we drove home. Upon seeing the house, the first thing I noticed was the FOR SALE sign. Oh yeah, that. The second thing I noticed was the new paver path Matt had put in right before I went into the hospital. “I think that path and the stairs up to the door are going to be very difficult with the wheelchair. I’ll walk with you instead.” But they said! But they said! We have to use the chair!!!! What if they find out? They’ll put me back in the Swedish belt! I knew he was right, though, so I let him walk me very slowly up to the door and into my house.
My house. I hadn’t been home since that awful morning of May 3rd. I had forgotten the new floors Matt had put in when we prepped the house for market. I very, very carefully made my way up the six stairs to the second floor with Matt by my side. Good leg goes to heaven, bad leg goes to hell. That meant that I was always supposed to ascend the stairs with my right leg first and descend with my left. I made use of my fancy new potty chair (a raised frame with handles that fit over the toilet). I wanted to see my new shower bench, but Matt was still working on that. Then he escorted me back down the stairs. Good leg goes to heaven, bad leg goes to hell. Non-recriprocating pattern. That was a fancy way of saying that I basically stopped with both feet on each stair. I still do stairs this way if I’m tired or carrying something.
My couch. I lay down on the couch.Matt had been sleeping on that couch since I went into the hospital because he didn’t want to sleep in our bed without me. I love that man. The kids bounced off the walls around us. This was not going to be my big chance to “plug back in” with my kids. That would take many weeks, but it was nice to be in their environment instead of my hospital room. I think I fell asleep for a while despite the chaos. Matt called for pizza to be delivered around 5pm since Sunday was a day when we didn’t have anyone bringing us a meal. By 6pm, we knew something was wrong. Matt called again only to discover that we had ordered pick-up instead of delivery. Since I needed to be back by 7:30, we didn’t have time to wait for them to try it again, but the thought of loading all of us into the minivan wasn’t appealing to Matt either. “Just stay here and I’ll be right back.” But you can’t! They said not to leave me alone!! They’re going to punish me! They won’t release me next week! They’ll take the kids away!
There wasn’t much choice. Matt put a show on for the boys and dashed off to the pizza place. He was home 15 minutes later with all of us still alive. I had been so looking forward to that pizza, but one thing that I’ve struggled with since my 30lbs-in-30-days weight loss is that I can really want something and then not have any interest in eating it. I’m pretty sure that’s what happened that evening because I was worried about getting back to the hospital. I was having visions of the character Brooks from Shawshank Redemption who just couldn’t handle “life on the outside.” Little did I know that I was just getting a sneak peak of the anxiety that would plague me relentlessly for the following year.
Matt took me back. I think we buzzed the nurses station only to wait FOREVER with no one showing up. Typical 7:30pm shift change. Finally, I think Matt unloaded me himself and took me up leaving the three kids in the car under the watch of the security guards patroling the NO PARKING zone we were in. I got back to my room, had Matt escort me to the facilities, so that I didn’t have to page the nurses for a while and sent him off with a quick kiss before someone drove off with our kids. I lay there like a slug for the rest of the night, feeling oddly secure in my hated hospital bed and wondering if I should carve the phrase Brooks was here somewhere in the room.