My double life

Photo credit: Lori Sapio Photography

Photo credit: Lori Sapio Photography

I have a confession to make: I’m leading a double life - or at least thats what it feels like. In one life I am the parent of an able-bodied and neuro-typical child, we go to little league games, do homework and fight about screen time. He has his moments but for the most part Jackson is a joy and our parenting experience with him is so… normal. Then there is my special needs parenting life where I am measuring meds, counting seizures and managing medical, therapy and nursing schedules. When at home these two lives are intertwined, it’s when I leave the home that I feel the conflict. This internal struggle came to a head a few weeks ago when I was able to join a handful of mom friends that I’d become close with from Jackson’s school for a night out - WITHOUT children. While I crave this friendship, these sort of events have brewed an anxiety in me for a few years now. But why? For the first time, I forced myself time to sit in the feelings and figure out the source.

Typical mom life

Typical mom life

I realized these feelings came more from a place of insecurity, of not-belonging, and then it dawned on me: in public my double life is exposed and may not be understood. I felt like an imposter if I didn’t share my true life but was worried about bringing moods down if I did. These mom friends all have relatively healthy children that are leading relatively typical lives. Now, I am aware that I also have one of these typical children and I consider myself beyond lucky that I still get to experience the joys of dance recitals and learning to read with him. But I also have another child for whom that won’t be possible and that other not-so-typical child frames and affects just about every single decision I make in a day. Adelaide has altered the way I think, the way I sleep and how I live my life to the point that when I tried to do something as normal as going out to dinner with a few friends I didn’t feel like I belonged.

Disclaimer: I love Adelaide and anyone can read any of my other posts to see how proud I am to be her mother and how she has fulfilled my life in ways I could never imagine. That doesn’t mean that her health issues can’t also make life more complicated. 

Generally speaking, confidence has not often been an issue for me. How did my dad describe me in his guest post? Ah yes, “over-indulged”. That’s not to say I haven’t had my moments or phases, but for the most part I’ve been comfortable with who I am and accepted who I am not. So, what’s different now? I could relate with all the women when chatting about kid’s activities, plans for the summer and next year’s teachers but it was all shaded by Adelaide. Yes, Jackson is in little league this Spring and seems to enjoy it but I had only been to one game so far because it hadn’t been warm enough to bring Adelaide outside so I had missed the others. Aside from wanting to make sure that Jackson had a great teacher next year, did any of the moms know which of the second grade teachers was the most compassionate and could emotionally be there for Jackson should Adelaide have a rough year? Laying in bed the next morning, I worried that I had spoken too much about Adelaide, about medical stuff and generally been a downer. Am I a real life Eeyore, unknowingly walking around with a rain cloud over my head even when I’m trying to have a good time? In my special needs friend circles, I don’t usually feel this way because there is a common understanding. Sharing a frustration with a new med or celebrating a seizure free day, doesn’t feel like a weight with which I am burdening them. They understand our different kind of normal. But I can’t just socialize with other special needs parents, my world is wider and I need to find a way to have my two lives co-exist outside our home and special needs community.

Not-so-typical mom life  Photo credit: Jenny Lane

Not-so-typical mom life

Photo credit: Jenny Lane

One way I am trying to do this is by forcing these two lives to collide…starting in my own home. Recently, a typical-mom friend came over to my house for the first time and saw first-hand all of Adelaide’s medical and therapy equipment and even met Adelaide’s nurse. I mean, the medical stuff is EVERYWHERE, so it's pretty hard to miss. It’s become such a part of our environment that I notice it all about as much as the hot wheels cars that are begging to be stepped on. But when this friend came over I stopped to look at our home through her eyes and, in a weird way, I felt validation. Friends often see Adelaide out in their world, where they are comfortable but it’s another experience entirely to understand Miss A in her world, where she is comfortable amongst the machines and syringes and nursing scrubs. I watched as this friend took it all in and I answered a few questions she had about stuff around the house. I felt like I was being seen. For the record, the purpose here was not to seek out additional attention and I am CERTAINLY not looking for pity. Quite the opposite. What I crave, and what I think causes the social anxiety and insecurity, is the need to be understood. I want to be able to talk about our life with the same ease as anyone else without worrying about bringing others down. Because I do still find joy in my life, I am happy more than I am not. What I learned during this introspective process is that I have to give friends the opportunity to understand our normal so that stories of our everyday life don’t bring their moods down. Both lives are part of who I am and people who want to understand it will. If you want me at my Hamilton and Jackson, you have to take me at my Adelaide and medical jargon. It’s the whole package, and maybe thats not for everyone and I have to learn to be ok with that too.