I went for a run this morning. At one point in my life I was an enthusiastic 1/2 marathon runner. I would run 5-6 miles daily. For various reasons, I haven’t run regularly for 3 years.
Maybe, this will be a positive I chalk up to the Covid-19 pandemic. We are still practicing strict social distancing. The world is starting to open back up again. I see friends on Facebook doing things like fast food drive through. I’m jealous.
We just finished week 11 of strict social distancing, As the US starts to open up again, Jason and I have decided it’s a risk we are not ready to take yet. Max, Rowen, and Charlie take a medicine that suppresses their immune system. We don’t know how their bodies would react to an illness like this. Maybe they would tolerate it well, maybe it would kill them. The last time Rowen had Influenza, he also developed pneumonia and was hospitalized. We are not willing to risk it. I’m hopeful that summer will go well and we can return to normal activities in the fall. Until then, we will play it safe.
This makes me sad. I miss baseball games, pool days, the library, the movie theatre. I miss not being worried about exposure to a disease the boys may not be able to fight.
We spent two weeks in quarantine in April. We had been exposed, even when being very careful. We were tested and had to report our temperatures daily to the health department. We lived in fear that the boys would get sick. It was awful. We did not have Covid-19, but that fear will not leave me.
The days we go to a store or to drop off something at the kids’ school, I find it difficult to sleep, wondering if we did everything right or did we just put ourselves at risk. I constantly think we are not doing enough, but I have a college daughter that reminds me how much we are doing.
It’s hard for her to be here. We are practicing at a level not right for her. She wants to go back to her college town and move into a house with teammates. It’s the right thing for her and for us; but that is excruciating to me. I will miss her and I’m not sure I would ever have been ready to know she was moving out for (most likely) the last time. It also means we may not see her for a couple months while the pandemic settles down, that hurts a mama’s heart.
We’ve been making the most of this. We’ve had more s’mores, more family dinners, movie nights family walks, and game nights. The boys have had more energy, not exerting so much at school. Sleep has improved for a child that struggles with anxiety. Jason and I are as close as ever.
Then two days ago Rowen fell and broke his leg. His bones are weak because of daily steroids (the same reason his immune system is suppressed). We have lived in fear of a moment like that since diagnosis. We know it could mean he may never walk again. He was slowly losing the ability anyway, but to lose it because of a break doesn’t seem fair.
Moments after the break, I was holding him. Tears were falling down his face, he started to shake out of fear and shock, and he cried a question, “will this make me stop waking?” I didn’t cry, but I didn’t answer either. I just told him I was going to be there no matter what.
He hasn’t been able to bare weight since it happened. I’m thanking God it happened while Jason is working from home. We are lifting him in and out of his chair, bed, the toilet. We are using a urinal because our bathroom is not accessible.
I was able to do all of that before the break, but he was helping during transitions. Now, I’ve done it 3 times and I know I can’t do it much more. He is heavy for me. Jason has had to do almost all of it. We whispered to each other that we need to find out about a hospital bed and hoyer lift. We will call the contractor for the bathroom Monday and figure out how to protect the boys’ immune system while also having a bathroom they have to have, built.
We are very hopeful that he will walk again. This however, has been an eye opener. As much as we thought we knew, you simply don’t know until you do.
Sleep has been restless. The first night after his break, I laid awake with my hands on him, praying that God would protect him from FES, a terrible, fatal reaction to bone breaks known to happen in DMD. Each time he moved, I would startle awake and start to pray again.
That same night, I told myself, “you need to run; wake up tomorrow and you go run that mile loop you take the dogs on.” I woke up that morning exhausted and stressed and that run never happened.
This morning I was more rested, but I wasn’t in a great mood, I snapped at the same child two times. I just looked at Jason and said, “I’m going for a run.”
It felt great. I smiled most of the rest of the day. A lot was going on inside my head. There was fear and stress and sadness. It was bubbling and the only way I knew how to relieve all that was running. It’s why I started running after the boys’ diagnosis.
It gives me a bit of control in a time when I have so little, in a time when there is so much uncertainty. I choose how fast to run, how far to run, where to run, when to stop, what to listen to during the run. The pounding of my heart, the heavy breathing, the sweat dripping…all of it was stress and fear leaving. It isn’t magic, it doesn’t last forever, but if I can string together 4-5 a week, it will sure make me feel better.