I often wonder where I belong in this life. What right do I have to call myself a parent of children with rare diseases or medically complex kiddos?
So many parents are facing unimaginable impending grief and sadness. So many children are on breathing machines, in wheelchairs, are tube-fed, have so much equipment and so many needs that 24 nursing is required. What right do I have to complain?
If you’re nodding your head in camaraderie with me now, I invite you to look at it in a different light. Would you roll your eyes at a parent of a child who suffered from ADHD or migraines to buck up? That they don’t have a right to their own grief and sorrow?
No? Me either.
All of our struggles are valid. All of them. Yes, even yours.
We’re all struggling with a diagnosis that has changed the course of our lives. All of us. Yes, even you.
Within the rare parenting community, I have seen remarkable grace and kindness that brings a smile to my soul since my girls were diagnosed with familial CCM in October of 2020. Parents who don’t know me from anyone have reached out and shared their resources, their advice, or just their empathy with me in the wee hours of the night when I couldn’t sleep.
My girls BOTH had brain surgery within 3 months of each other. They are both dealing with seizures and other concerns and deficits. We have been at the emergency room more than a half a dozen times since this began for everything from severe but routine illness to side effects from surgery and even stroke watches.
My girls have been in hospitals and thrown from doctor to doctor. Their junior and senior years of high school have been interrupted and they are now staying home to go to college. Not to be close to me. To be close to their doctors and to be a bit more practical in the choosing of their careers. The pressure is on them in a new way now.
Sure, I’m grateful to save a few 10’s of thousands of dollars. But I sure wish they felt secure enough to go away like we had planned.
Instead, they stay home, take classes locally, get jobs, and hope their employers understand the massive amounts of time they will need off to get their appointments done. I will stay on top of them about sleep and meds and help them transition to taking over their own care.
But of course, I will have to sign the power of attorney. I will live my life on-call, so to speak. I will be ready to step in at any time and take over. You see, I’m not being dramatic when I say they could live to be 108 without any further incident. Or they could have a stroke at 23. It’s just so random. So many live full and “normal” lives with this disease and never even know it. Others have struggle after struggle.
We put in a pool this year. It’s actually being built right now. We had never planned to live here forever. It’s never felt like home to me. Moving here from the east coast in my late teens was absolutely against my wishes and I have been biding my time until we could relocate once the kids are done with school and moved away. We’ll stay here now. Near some of the best neurologists and neurosurgeons in the world. Even if my girls move away, they’ll be here for treatment. So, here we’ll stay.
I’m at peace with that, really. I’m at peace with my life being divided into the before and after. The work me and the advocate me. All of those things are fine.
That’s not to say I wouldn’t trade them to give my girls their sense of normalcy back, but I’m not bitter. I’m not resentful. I’m not angry.
I’m sad. I’m so terribly sad. The ache in my heart is constant. I never feel rested or relaxed. I never feel truly carefree. It’s funny. I didn’t really understand worry until my girls were diagnosed. Now that’s all I do. I worry at all hours of the day and night. I’m a worrier.
Among my worries nowadays, do I belong? Do I belong among the rare disease parents? My children walk, talk, go to school, eat by mouth, drive a car (when we’re seizure-free for 90 days or more), get themselves dressed. They’ll even go to college in about 8 months.
Where do I belong? Where do I fit? So many CCM parents fall in this in-between. Same for Epilepsy parents. We live in the in-between.
Rare parents and in-between parents are often the same people. We straddle both groups seamlessly and bounce back and forth depending on the day. We belong in the rare parents’ groups. Now, we just need to convince ourselves of that fact. And if we feel like maybe we aren’t in the right place, reach out. these rare parents will remind you.
If you live in the in-between with me, welcome. You belong. Rare parents are the most selfless and compassionate group of folks you will ever meet and I’m honored to call myself one of them, even if I do second-guess my own sense of belonging sometimes.