Once upon a smile

Recently, I was speaking to a friend we’ve known for several years and he mentioned remembering Adelaide’s smile and it struck me how many people who are in our lives now have never seen her smile or laugh or really make much sound at all. When I look at Adelaide I see her whole person, everything that she has been over the years, every inch-stone achieved even those that were eventually lost. I see a smile and laugh in the back of her eyes, a shadow of who she was, even if she hasn’t been able to show it to us in well over a year now. I wonder what do people who meet her today see in her if they don’t have that history? Do my stories of her smiles seem like a fairy tale? The idea of people new to our lives never knowing what her laugh sounded like breaks my heart but I can remedy that. Thank goodness for cell phone cameras and my penchant for taking an obscene amount of photos of my children.

Even at her best, Adelaide made us work for a smile. I’m sure that’s partly due to her various neurological disorders, but I would also like to imagine that it's just her personality. She has always been a tough little lady who called the shots - she wasn’t about to just give out smiles willy nilly to whoever asked for one. She smiled when she damn well pleased and often not when we would expect her to. Flashback to two years ago when Jackson discovered the joy of whoopee cushions. It was a major theatrical production, as is fitting of our family, he would set them for everyone including himself. For the handful of days before the whoopee cushion broke, Adelaide would smile and laugh whenever she heard it. Apparently farts are funny at all ages and developmental stages. Sometimes she would laugh when we tickled her, especially up the sides of her belly and under her arms - but this was highly mood dependent. Jackson would blow raspberries on her belly to moderate success but my favorite was the bathtub. For a summer, whenever, she was in the bath she would laugh and kick in the water. Just pure joy. The crazy thing is that if Adelaide were to suddenly smile or laugh today, I would probably think it was a seizure. It’s been so long that I wouldn’t trust that it was actually a real smile. How messed up is that?!

Over the holidays I had a dream that Adelaide smiled, it was beautiful and so warm and there’s a good chance she was glowing (more ethereal, less radioactive). I was awoken from the dream by one of her alarms going off, alerting me that her blood oxygen was falling, and ran to her side - no smile in sight. But for a moment in my dreams she was smiling again. I have such a hard time believing that her smile is lost forever. It has to be in there somewhere right? No one can tell us why she no longer smiles. Doctors say that her MRI doesn’t show the damage you would expect to see from a child with her developmental delays. She should be doing better than she is. Perhaps it's just hidden behind all the meds that are keeping the seizures at (relative) bay or maybe the seizures have done damage so deep in her brain that an MRI just can’t detect it. There’s no way to know of course, so we dance between seizure control and med side effects, trying to find a balance for her best chance at quality of life and maybe, just maybe, the opportunity for her smile to return.

I follow the social media accounts of many families with disabled kiddos and a common theme is that in spite of everything their child has been through their smile can light up a room. I love these photos and can’t help by smile myself but I’d be lying if I didn’t acknowledge my jealousy. I don’t think I’m supposed to admit that, but it’s true. Prepare yourself because I’m about to take you on a wild ride that is my train of thought: One moment, I’m wishing for her to smile, to know that she is in there, that she knows who am I, that she is happy. But then almost immediately I go to the dark place and think how frustrated she must be if she is in there and is unable to express herself. Because if she is feeling joy then she can also likely feel pain and fear and what if she can’t express those emotions either? So, perhaps it is better if she is clouded over - her life is so hard - just until we can get her more stable. But then what kind of life is that?! Is placing her in an emotional coma really the answer? Aaaaand we’re back. Thank you for joining me on the anxiety express.

Interestingly, regardless of her ability to communicate or smile she still manages to connect with people. Adelaide leaves a lasting impact on nearly every person she meets, she invades their souls. I dare you to look away from her gaze when she is locked on your eyes. It’s just not possible. In those moment where she sees you, nothing else matters, the whole world fades away and everything is love and peace and Adelaide. A little hippy dippy? Perhaps, which is def out of character for me. Just give me this one and I promise not to start pushing kombucha and goat yoga on you. Just like I won’t give up on seizure freedom, I won’t give up on finding her smile and when it returns, you better believe there will be a hundred pictures of it. I can’t wait to share that day with you.