There are a lot of resources out there for healthy parents of disabled children. There are parents who are fierce advocates for their children, and write about the experience. There are Facebook groups and communities for parents of children with a huge range of illnesses and disabilities. There are a lot of fantastic resources out there for a very needed demographic, and I’m not discounting them at all. Parenting a child with disabilities is an experience with unique challenges that I’m sure can be very isolating.
There is less written out there about a situation like mine: I am a chronically ill, disabled parent to a healthy five-year-old. It can also be a strange and isolating experience with its own unique challenges, but sometimes its own unique joys, which is why I’m writing about it now.
Looking back, I definitely would have qualified as a child with a disability, but I never saw it that way. I have a lot of memories of pain and sickness, especially starting at puberty, but I had symptoms even earlier. I started getting migraines in about the 3rd grade.
A lot of people with my conditions–especially hypermobility disorders, which have a 50% chance of being inherited, choose not to have children. But I didn’t even know hypermobility disorders like Generalized Hypermobility Spectrum Disorder which I am now diagnosed with, existed until my late 2016 diagnosis. Snowy was born in 2014. My story is not unique in chronic illness parenting circles: on every Facebook group post where people with hypermobility syndromes are wondering whether or not they should have children, there is a generous smattering of comments from people diagnosed long after they had kids. We didn’t have the knowledge to “know better, do better”; our choice to have kids was not informed. That isn’t to say any of us regret having our children, but it is to say we live with the knowledge now that we could have inadvertently passed our syndromes down.
So far, Snowy shows none of the signs of inheriting any of my illnesses. Of course, if Snowy were to inherit any of my conditions, or have any other illness, that would be a bridge we would cross when we came to it, and I would be her fiercest advocate. As a parent with these disorders, I know the challenges of them well, and though they manifest differently in everyone who has them,
But as it stands, only one of us is sick, and it is mother, not daughter.
One of the questions I get asked the most about being chronically ill is how Snowy deals with it. Is she fearful? Resentful? Different than most children?
And, honestly, in most ways…no. Snowy is a remarkably normal 5-year-old. She definitely knows that I am sick; we are honest with her about mommy not feeling well, as I think being lied to would cause much more resentment in the long run. Children are very resilient, and kids can adapt well to a number of different living experiences. In Snowy’s case, that has meant adapting to an ill mom. We have explained that sometimes mommy’s body is fragile, and that sometimes mommy has to rest more.
I have learned well how to balance activity and recovery. I try to have a lot of fun with Snowy, but I have also learned to accept my limits. I am extremely thankful for my husband, because he’s the parent who takes her out to the woods, who helps push her on her bike. There are physical limitations to what I can do, but there are also special things Snowy and I do together. We have favorite shows we watch over and over together, like the Wild Kratts Christmas episode. We do endless pretend play from bed: she brings me her Hatchimals and LOL dolls, and we come up with a whole world together. We do “Pokemon battles” with her Pokemon toys, something else I can do from my bedside or sitting down. We read lots of books.
I am honest with Snowy about when I have good days and when I have bad days. I often will choose one day a weekend to do something with her, and the other day to have a rest/play at home day together. I also often save the big stuff for doing with Mr. Snowflake: zoo trips, for instance, so that I’m able to take my wheelchair (self-propelling hurts my joints). Snowy usually rides on my lap. If I do the zoo just me and her, we usually stick to one or two areas, often the play areas where Snowy can do something active and I can sit for a while. Snowy is a very energetic little girl, so I am constantly coming up with strategies to handle her energy with the fatigue my conditions cause.
As a chronically ill parent, our life definitely might look different from that of a healthy family. But in a lot of ways, we look similar. All families have unique challenges they must navigate, and I am thankful I get to learn how to navigate being Snowy’s mom, disabilities and all.