You can make it through staying safe at home
I want to say how sorry I am to see everyone struggling and scrambling to grasp “the new normal” hopefully for only the next several weeks. I know it’s depressing and scary and life altering. I’m not posting this for sympathy or from a judgmental vantage point. I’m not going to minimize the struggle, and I’m only speaking from personal experience. I know how many blessings we had and have and how much privilege we have.
When Jayce had that first, absolutely life altering seizure, I was working. He was about 10 1/2 months old, I was lucky enough to have a job where I could trade off with a friend and we could work as realtors and watch each other’s babies. Both our Husbands’ working full time. I wasn’t making a ton of money, but had the time and work put into building a career and being in a much different spot than we are now. I loved working. I never pictured myself being stay at home full time. It wasn’t what I wanted to do.
It changed in a blink. By the 3rd seizure, Jayce being transported by ambulance and helicopter, things had to change. His pediatrician told me that I needed to “not focus on the gym, because the daycare is a Petri dish and it could kill him”, and things rapidly changed. It shook me. “Normal” was not a thing anymore. We had no idea when a seizure would strike, but they all were long ( like an hour and 54 minutes long), and could be set off by something as small as a low grade fever from teething or something worse like a cold. Have you ever seen a person, let alone a baby intubated? It’s awful and I wouldn’t wish it on anyone EVER. No diagnosis, just triggers. Almost losing my child a couple of times forced us to make radical decisions. I had to stop working. Now we are one income. Our insurance was shitty, and the medical bills mounted. I thank God that I had family help or we would have been on the streets. You’ll never understand my gratitude. The financial struggle was big. The emotional struggle was bigger. I want Jayce to live.
The isolation over the years and the very tough decisions we’ve made over the years are hard. We are so cautious of everything because his body can’t handle it. We already stay at home during flu season because it’s not worth the risk. Jayce didn’t qualify for a nurse and I’ve never felt that school could even be safe for him to attend. It sucks BAD. After this hopefully passes, our lives will be the same. That’s OK. I don’t expect people to live this way, and I get it. We made our choices to keep him safe.
I guess my point is that this is temporary for many. Don’t think that I don’t understand fully the long term ramifications of people not being able to work, or pay bills, or simply have food to eat. I do.
I realize people are feeling completely out of control of their own lives right now. It’s scary AF and overwhelming, and nobody knows what to do with themselves.
What I DO wish is that people would see how much love and support is out there for one another right now. The classes that drive by holding “happy Birthday” signs for classmates? AWESOME. The people visiting grandparents in care homes and playing checkers on a window are amazing. I see people connecting and reaching out in different ways, and it’s creative and beautiful in the midst of pandemonium. I wish I had thought of all of these creative things to do all this time. Soak some of it in. Enjoy the small victories. There is light at the end of the tunnel, but you’ve got to face the the light to see it.