Having a medically complex kid with special needs is hard. Really hard. Almost everyone know a child with some special needs but few people know a child with many special needs and a tracheostomy.*
I tell people all the time how much support I've gained from the parents of the Tracheostomy.com forum over the years. Our kids have a huge range of abilities and conditions. But through the forum I have found parents who I can relate to. I think there is great comfort in feeling understood. Especially when you are going through something that you think other people just can't understand. Even though it is true we all have difficulties in our lives it is comforting to find people who are going through something similar. Somehow it gives us strength, I think, to know we aren't the only ones facing whatever that difficult thing is.
That is why my friendship with my dear friend Christy means so much to me, even though we've never met face to face. She is AMAZING and so is her daughter HARLIE. She has been through SO MUCH. They are both fighters and live full rich lives despite the difficulties that Harlie's medical conditions cause. It happens that her daughter is also a craniofacial patient like Ainsley. Our children are very different but there are enough commonalities that Christy and I really understand what each other are going through as parents of these highly demanding children.
We read each others blogs and talk on the phone periodically. After a post she'd written about a biting remark a kid at school made regarding Harlie I recommended that she read the book Wonder by R.J. Palacio, which she did awhile ago. For parents of craiofacial kids this book stirs up some very difficult emotions. Her son recently started reading it too (It is highly recommended for grade schoolers. Both my kids have read it. But it is a great read for adults too.) and she posted a review of it on her blog today. I would love for you to read her post, click here to go to it. In her post is a particularly poignant excerpt from the book. It relates to siblings. In recent blog posts I said this:
I feel like Evie and Adrian get shortchanged. (Sometimes I cry as I tuck them into bed when yet another day has gone by that I feel Ainsley got the bulk of my attention. Though it's just as big, if not bigger problem, that my husband works such long hours.)and:
My greatest accomplishments and my greatest failings are all wrapped up in this thing called Motherhood.I know those statements may sound dramatic but they speak the truth about how I feel as I try to keep things in balance for our family. Having a special sister like Ainsley is very demanding, even though we love her so much, and it is hard on the siblings. I think the excerpt quoted in Christy's post really explains it so well.
All humans want to feel that they "fit in". When your physical appearance is different that can be difficult to do. Many different people face this issue on different levels. Society impresses the idea on us that a certain physical ideal is most valuable. We all fall into this false trap because we want to be valued. Even those of us who are lucky enough to fit into the "normal" category of appearance still have things we hate about our own appearance. What a shame. The truth is that when you truly love someone their appearance is of little consequence.
Even if you don't know someone with a craniofacial condition, we all can relate to the desire to fit in. That is why I think this book is a good read for EVERYONE. My hope is that this book builds compassion toward people with craniofacial conditions and all people that look physically different. I hope you will read the book or at least read Christy's post. Have a great rest of your week!
*P.S. I wanted to point out that in the book it is mentioned that the main character Augie had a tracheostomy when he was younger.