Being a caregiver is hard. It can be emotionally and physically draining. It can also be confusing. For me, not only am I mom to my boys, I am also their nurse, physical therapist, respiratory therapist, dietician, mental health specialist, and CEO of their complicated health. This year we’ve added teacher (of all subjects) to the list. Normally we rely heavily on our village to parent and care for our boys because we know we cannot do this alone. However, in this pandemic year, we have had to keep the boys away from most people in order to keep them healthy and safe. We are grateful for the help we have received from others in the past year when they were able. We are thankful that many people have been careful and stayed away without us asking. The result, though, is that all of the boys’ needs are being met by my husband and I. It’s exhausting and, frankly, lonely.
In this state of mind, even more challenges were presented to our family.
Last fall, I wrote a piece on this blog called Holding Our Breath in which I describe the dread we feel every time we go to a check up with the orthopedic doctor. Well, in February, the dreaded words “It is time” were spoken. Our older son’s scoliosis curve changed from 35 degrees to 52 degrees between visits. The curve is now affecting his mobility and his ability to breathe. It is time for spinal fusion surgery.
We were devastated, and our son was terrified. It took me a good week to work through the reality that, with so little in my tank, we would have to face a major surgery with several months of recovery. I couldn’t talk about it with anyone but my husband and two other SEPN1 mama bears. Though we always knew this day would come, I couldn’t help but ask, “why now?” I mean, how much more can we take?
Then I did what I always do. I went into “go mode”. My husband and I set up a follow up video visit with the surgeon to understand what exactly the surgery would entail. I consulted with our patient organization, Cure CMD, and asked for advice. I emailed the boys’ pulmonologist. We had long conversations about it with both of our sons. We slowly started telling our immediate families.
After a lot of consideration, we scheduled the surgery for June. Fifty-two degrees is bad but doesn’t make the surgery urgent. However our son wants to be healed so he can start high school in the fall. He’s still doing school virtually which makes the many pre-op appointments easier. He’s the healthiest he’s been in years because he has been away from all the germs this year (COVID and otherwise).
So here we are. Preparing for what will most likely be the biggest surgery of our son’s life. While still in (though slowly creeping out of) a pandemic. While feeling depleted. While dealing with other treatable but not insignificant family health issues, including my ongoing anxiety and depression. But that’s the thing about rare disease. It doesn’t care about your timelines or hopes or plans. It will drop that other shoe whenever it damn well feels like it.
A few people have already asked how they can help us during this time. We will definitely need help but I’m just not sure what help we will need. I do know that we will take all the prayers, thoughts, good vibes, love and light, and positive energy you can offer. I will give updates on this blog and on the Our SEPN1 Life Facebook page. Thanks for being our village.