Almost Too Hard To Bear

Watching penguins

It is a high price to pay when your immune system can't tell the difference between the bad guys and the goods guys. With each cold, sniffles, or illness the toll on Hyrum's bottom grows. He weakens and struggles. Having work hard to gain back what ever his losses.

Each time a rash appears, or a new round of Covid Toes, or the increase in headaches and pain, we both know the things are going to get a little harder over the coming weeks. It started in 2022 and carried over in 2023. He was no longer able to get to school most days again. We had to figure out what mobility aids and accommodations would help him to be able to more. Wheelchairs and electric scooters were the most helpful physically, but they took a toll mentally and emotionally.

A closer look and admiring the speed of penguins

Having a wheel chair allowed Hyrum to go places he wouldn't have been able to physically. We had purchased a wheelchair but it was tough moving out into the world with one. So many people were resistant to him using one. They, like me, misunderstood what a wheelchair could be and how much it could help. A large percentage of people who have a wheelchair have some use of their legs. A classmate in one of my college classes was so helpful and answering questions. They used a wheelchair and helped me to understand what a difference a wheelchair could make. After purchased one after talking with them.

Class field trip at museum

I really hadn't thought about getting an electric wheelchair until at my honor roll graduation luncheon where I ran into a girl who was has POTs and used an electric wheelchair. POTS is similar to dysautonomia. Her and her mother were incredible. They explained at how helpful a mobility device could be. She was able to do more and enjoy life in ways she couldn't before it. She was getting her Associates degree and would not have been able to without her electric wheelchair.

Taking a break and sketching at the museum

Hyrum was still hesitant. Honestly, I was still hesitant. Did this mean this would become our new normal? If it was, could I accept that? Digging into all of the emotions iss another challenge that surrounds this illness and the changes we have had to face.

I asked families in our online Long-Covid Kids group if they could share pictures of their wheelchairs, scooters, walkers, and canes. He could see kids just like him, with the same disease using them and finding joy in the world. There smiles were beautiful. That is what we needed, more smiles. This was a huge turning point mentally for him and for me. It was going to okay if he needed one. He would be okay. I would be okay.

Some of the family enjoying the aquarium

After talking with the physical therapists at Hyrum's school we were able to get a used electric scooter donated to Hyrum from a non-profit organization. This would help do more at school and avoid crashes. He struggled with kids at school understanding why he needed one. Why? Well, sometimes Hyrum could walk and on other days he couldn't.

Luckily, his teacher had me come to his class and talk to the students about Hyrum's condition. This helped Hyrum not worry about explaining things to one more classmate. This helped his classmates to understand and be more supportive to their friend. After that things were alright with our new normal. Not all change is easy and this change was a tough one that we managed to get through. All of us a little stronger on the other side.