Sunday, December 22, 2013

Toy stores and Rett Syndrome don't mix

It’s not easy for me to admit this, but toy stores make me feel sad, anxious, and even resentful at times. For me, walking around a toy store is like getting a tour of various landmarks that scream “this is what Caroline’s life would be like without Rett Syndrome.” 

It’s been almost three years since Caroline lost purposeful use of her hands. I got my first glimpse that something was wrong while watching her play with her toys. That first image of Caroline struggling to pick up one of her stacking cups is permanently ingrained in my memory. By the time we got a diagnosis, Caroline could no longer grasp or hold anything. Her toys quickly became a painful reminder of all that was lost. I was so consumed with feelings of grief and helplessness that I ended up giving a lot of them away.  

When Christmas rolled around that year, Mike got a bunch of toys for Caroline “from Santa.” He didn't focus on the fact that she couldn't manipulate them. He just wanted her to experience Christmas and Santa the way he did as a kid…the way most typical children do. Inspired by his approach, I decided I needed to make a real effort to get over my issues by finding Christmas and birthday presents for Caroline on my own. This is a very basic task for a parent so I should be able to do it, right? Well, it’s been more than two years and I have not made much progress. I still struggle with the concept of toys; the pain associated with them is still there. I noticed that I go through the same thought process every single time I attempt to find a gift for Caroline that doesn’t come in the form of a book, CD, or DVD. But I still push myself to do it even though deep down inside, I don’t really want to. Before I leave the house, I always say something along the lines of “I don’t know what to get for Caroline. This is really depressing.” And Mike always responds with “I know. But, it will be okay. Just get her something that’s age-appropriate.” I tell him I have no idea what kids her age are into so he gives me a few suggestions. And off I go.

Here’s what goes through my head when I visit a toy store.   

This is not my world. 
I always start by telling myself the same thing…maybe if I walk around long enough, I’ll somehow magically find a toy Caroline may be able to enjoy. But as I look around, I notice things I've somehow trained my eyes to ignore at all other times…images of children doing typical kid things. All around the store, I see pictures of little girls playing, running, drawing, holding hands, and doing things I daydreamed about when I was pregnant. I can barely look at these images without getting knot on my throat. If I dwell on my feelings too much, my eyes start to well up. How is it that I manage to live in a bubble all year around? The last thing I want to do is get emotional in public so I pull myself together, and do my best to act like the other parents in the store. When I’m around typical families, I don't feel like a "real" parent. I feel like I'm faking my way, pretending to understand a world I know very little about.  

Caroline is not a baby and yet here I am in the baby section. 
Inevitably, I find myself in the Baby section. That aisle has a tendency to create a sinking feeling in the pit of my stomach. It reminds me of our life before Rett—a time before wheelchairs, braces, sensory issues, complex communication needs, therapies, IEPs, seizures, and parents outliving their children. I always seem to gravitate towards the baby section in hopes of finding something Caroline may enjoy that’s not too “baby-like.” The truth is that there’s no such a thing. I often feel like I’m being punched in the stomach whenever someone compares or associates Caroline to a baby. It undermines her. So why am I in the Baby section looking for a toy that doesn't exist? 

Caroline is missing out on so much. Life can be so unfair sometimes. 
Still empty-handed, I drag myself to the section with age-appropriate toys for Caroline. I start to wonder what four-year-olds are into. Barbies? Dolls? Kitchen sets? Why are there toy brooms in the “girl” section only? Sigh, I don't want to reinforce gender roles. Wait a minute, why am I even worrying about things that have no bearing on Caroline's reality? I find myself standing in the middle of the aisle, feeling clueless around all these toys and activities. I catch myself observing other kids and their parents for clues. Gosh, their lives are so different than ours. These parents have no idea how lucky they are. They have the luxury of hearing their kids’ interesting and complex thoughts. Their kids are able to express their individuality. Why was Caroline given such a difficult life? She’s so full of innocence and love. She doesn't deserve this. But life doesn't come with any guarantees. Crappy things happen all the time, whether you think you deserve them or not.

But Caroline is still a kid--she should experience these “typical” childhood things! 
Usually, after 30-45 minutes or so, I realize I need to do what I came here to do. So what am I going to get for Caroline? She’s into princesses right now. Will she enjoy dressing up like one? She also seems fascinated when she watches me put makeup on. Maybe she would like pretend makeup? Or is she too young for that? What message am I sending? Ugh, I need to just chill out and stop over-thinking everything. Besides, Rett Syndrome is horrible, and I have no idea what the future holds. I should get something fun. I should just spoil her. Still, as I place toys in the shopping cart, I can’t help but resent the fact that she can’t use any of these things on her own. But this is not about me. Caroline shouldn't miss out on silly or fun things because of her condition. I guess we'll have to "play her toys" for her. It will be wonderful, fulfilling, and sweet…I hope.

When I get home, I show Mike what I got. He knows how difficult this is for me, and expresses support and appreciation. I don't know how he always manages to find toys with so much more ease than me. And he seems genuinely excited to share them with Caroline, which in turn makes me less sad about the whole thing. 

When it comes to doing things that feel awkward and unnatural because of Caroline’s disability, I wish I could learn to put my sorrow aside and focus on the beauty. I just don't know how to fill that hole sometimes.  

My heart

Caroline's Christmas presents