At three o’clock in the morning I woke Mark up because my heel was hot (potential bed sore). I wanted him to move me but he didn’t understand what I was saying because of my garbled language. I repeated ‘heel’ several times but he thought I said my head, my hair or my hip. Finally I said my foot and that lead us closer to my heel. By the time he guessed my heel we both were pretty frustrated with each other and actually I was mad. In my mind Mark should have guessed my heel first because it usually is my heel but he isn’t a mind reader. After we both settled back into bed I couldn’t help but feel how wrong I was to get mad at him. It seems as though I am critical of Mark when he doesn’t deserve it. The poor guy does absolutely everything for me and the few times he screws up I get frustrated or critical. Shame on me.
Before I tell you about our car ride to Florida I need to explain a couple of things leading up to it. Since January I’ve only ridden in our van three times because of the frigid temperatures in Muskegon so we were not able to test our comfortable riding procedures properly. Plus my neck muscles have declined drastically from January to February which makes it difficult to keep me from falling side to side while reclining in the front passenger seat. With that said maybe you can better understand why we were not better prepared for a 23-hour car ride.
On the night we left for Florida Bryan worked all day but suggested we leave that night before I changed my mind again. Earlier that day Kelly bought us a queen-sized, cushy mattress pad with a thick piece of memory foam thinking it may make our ride more comfortable while laying on the floor. So by 8:00pm we were ready to roll. The middle row of seats were taken out of the van, the van was packed and warmed up and we said our goodbyes. Mark picked me up from my wheelchair with Bryan waiting in the van to assist. That part was flawless until they tried lifting me onto the back row of seats where that comfy mattress pad was placed. The temperature in Muskegon that night was zero degrees and when I get cold my teeth chatter uncontrollably and my legs stiffen so when they tried to lay me on the seats my legs wouldn’t bend and that nice thick piece of memory foam took up too much room. Reluctantly we took the memory foam out of the van and left it at home. So there went my comfy padding for the floor and laying on the back seats wasn’t going to work either. My mind drifted back to what Bryan said to Mark and I that morning about finding a solution to all of our obstacles that we may face and if we can’t we will turn back.
As a temporary solution Mark put the pregnancy pillow on the floor and laid me on it and we set off for Florida. For the next hour Mark rearranged the stuff in the van so we could both lay down. The pregnancy pillow turned out to be the best solution of all and that is how I stayed on the whole trip to Florida. Bryan drove all night while Mark took care of me, repositioning me every two hours, and at daylight Mark drove while Bryan took care of me and slept. We made it to our final destination 23 hours after we left home thanks to my awesome helpers and a very comfy pregnancy pillow.
Mark turned sixty on Saturday and our kids and some of our friends brought the party to us. Chad was able to come home from Dallas for a long weekend and Corey had been home the weekend before to celebrate Ashley, Harrison and Mark’s birthdays.
Before Mark’s party started our kids all came together in our living room, with Corey tuning in from San Francisco via FaceTime, to present this beautiful video that they made for him.
At bedtime Mark carefully picks me up from my wheelchair and gently lays me into our bed. We’ve been sleeping in our bed again not because it’s more comfortable than the couch but because I want to be closer to Mark. Night time can be really scary or lonely with not being able to talk or move. Once in bed Mark rolls me to my side putting one pillow against my back to help support me and one between my legs to better align my hips and legs. He makes sure my hair is out of my face as he adjusts my head pillow and puts my bite splint in my mouth. I’m starting to get hot spots on my heels which could easily turn into bed sores so Mark wraps my heels in a soft material like lambs wool.
I usually fall asleep right away and sleep for three to four hours before I wake up and need to be moved. Before I wake up tired Mark I contemplate whether I can go back to sleep or not. I try to adjust my shoulders by myself but they won’t budge. My legs are the only things I can move to help me get comfortable but they are starting to feel like really heavy limbs. Last night when I woke up my left ear was burning because it was bent over while I was sleeping so I wanted Mark to rub it. I tried to explain for about five minutes before Mark understood what I was trying to say. When he finally guessed my ear he thought I said no and kept naming more body parts until we came back to my ear again.
I want you to understand that I am one of the lucky ones dealing with ALS because I still have a voice. Some ALS patients lose their voice early on and don’t have a Tobii to speak for them or have a companion to sleep next to them. Mark and I have had two years to communicate with each other and work out the bugs so that I am always made comfortable. Some people never get this time.
I am truly one of the lucky ones.