[Note: If you haven’t read the book Wonder by R.J. Palacio or seen the movie, I strongly urge you to fix that.]
In the book and movie Wonder, Auggie’s sister Via feels lost in the shuffle of his world. Seeing her struggle with loving her brother and wanting to support him but at the same time feeling angry, hurt, and resentful of the her anger and hurt of most of everyone’s attention being on him and his needs. Yes, Auggie has a medical condition that has made things different and harder for him since the moment he was born. Yes, Auggie is embarking on a very new, challenging adventure in going to school. But that doesn’t mean that his sister is immune to the struggles that everyday life brings. She still wants and needs attention from her parents and friends.
When I was watching the movie a few months ago and it got to the part where Via and her mom hug after her performance in the school play, I lost it. As a mom, I know that one child is not intentionally given less attention than another. But it happens.
When I was pregnant with Moses, I remember coming across a blog written by a mother who had two children, but the blog was only about one of them. Perhaps it’s due to my own middle-child syndrome (it’s a real thing, just ask me), but I am very sensitive to children being left out. Do I think that mother who writes that blog loves her other child any less than the one that the blog is about? No. As a mom of two children and being one of three children in my own family, I know good and well that a mother, or father, does not love any child more than another. A parent may love each of her children differently, but the depth of love is the same for each child.
So when I saw that blog that focused only on the child with Down syndrome, it really struck a nerve with me. It also got me thinking about how I would balance having not just two children, but one that has typical needs and one that has different, special needs. How would I make sure that Josie didn’t get lost in the shuffle of this new world we were about to enter?
As with many other things in life, it’s easier to place expectations and blame on others. That’s what I have been doing for almost 19 months now – expecting others to help me find that balance by asking about Josie and commenting on what an amazing, special little girl she is. Thankfully, I can honestly say that she really does get as much attention from others as Moses does. My family and friends especially do an amazing job of loving on her as much as they do Moses. Even so, there have been times I’ve found myself getting upset when I feel like she’s getting less attention from others. For example, when I share a picture or story of her on Instagram or Facebook and it doesn’t get as many likes or comments as one of Moses (I’m seriously rolling my eyes at myself as I type this, but at the same time, this is the reality of the world of social media), I get upset because, in my humble motherly opinion, she deserves just as much love from the social media world as him (because she does.)
But then the other night, it finally hit me that it’s not at all about the attention she gets from others. No, it’s all about the attention she gets from me.
In our daily life, it’s really not much of a struggle to give Josie enough attention because, quite frankly, she has a big personality that demands attention. Sometimes very loudly, sometimes very inappropriately. One night, she looked at me in a very disapproving way and told me I needed to “drop that attitude” after I told her to eat her supper. She can make us all laugh with her singing, dancing, stories, and sass.
It’s more of my mental and emotional attention that I fear she’s getting short-changed in, much like Via did in Wonder. For me, one of the things I’ve learned about myself is that it is easy to get caught up in that world of Down syndrome because, well, it’s different. I think about Moses and how to navigate his unique world a lot. There are a ton of unknowns and uncertainties. With Josie, there are definitely unknowns and uncertainties, but they have been and will likely continue to be fairly “typical” and, quite frankly, easier to deal with. I didn’t really have to teach her how to crawl or pull herself up to stand. I didn’t have to wonder when she would start talking because it seems like she figured it out on her own one day and hasn’t stopped since. I don’t do extra reading on how to survive a threenager or prep myself for the roller coaster a 4-year-old will likely bring (although I probably should). With her, there is a lot of “typical” trial and error, in part because she’s my firstborn and I have no clue what I’m doing, but I don’t constantly second-guess myself if I’m doing everything I can to help her reach her fullest potential. I don’t worry (too much) that my errors will prevent her from enjoying many achievements and accomplishments in life. I know that girl of mine will be successful despite me. I just pray that she either forgets my mistakes or is able to find a good counselor to help her work through how I screwed her up because I gave more attention to her little brother than to her.
Since Moses was born, he has received more of my attention whether it be because of additional doctors visits, scheduling weekly therapies, health issues and having surgery, or simply because he’s super cute. With Moses, there there is more reading and learning because I feel like there is less room for trial and error. I regularly second-guess myself about if I’m doing all I can to help him reach his fullest potential. The last thing I ever want is for him to be more at a disadvantage that he may already be at because he does have that extra chromosome that causes physical and intellectual differences and challenges. There is the mental and emotional struggle to find the balance between recognizing he is different because of Down syndrome and not letting it define him.
The conclusion I’ve come to is that I don’t want to use Down syndrome as an excuse for Josie getting less of my attention, and that’s what it feels like I’ve been doing. The last thing I ever want is for her to think that she’s less important, less special, less unique than her brother. Because she’s just as important, just as special, and just as unique as he is. In the end, I know that my children need different things from me because they are their own different, unique human beings. I just pray that I can navigate both of their worlds successfully and give them both the attention and love they need and deserve.