After the Fragile X Conference in Miami was over, I saw many posts on facebook, blogs, emails, etc.ranging from deeply sad to incredibly optimistic. While mostly fun to read, some of them produced an unforeseen angry reaction from deep within me. Somewhere I had buried a deep frustration of what I will call "the journey of the parent" versus "the journey of the sibling." What do I mean? Take the following example.
I was sharing some of my frustration (with my mom) that sometimes reading the experiences of parents with younger children with Fragile X upset me, because many made it seem like people with older children just "don't understand." Somehow the older children are missing out on this "new age" of drugs and cures. Yeah. I heard those same things when my brother was young too. In fact I thought by the time I was older there would BE a cure.Wishful and slightly naive thinking on my part.
My mother, in her usual gentle way, pointed out that her views on my brother changed significantly from when he was young to when he was older. From everything to expectations on what he would learn to how he would act, my mother went through a deep transformation. And me? As a sibling? Well my journey was incredibly different.
I accepted my brother from the beginning. I didn't care if they found a cure. Okay that's not true. I wanted a cure for selfish reasons, so I could have kids without Fragile X. But I didn't want to cure my brother. I wanted him to be the same. Because I loved him and would do anything for him and if he was cured who would he be? Oh I can hear the screams from parents now. Please understand I'm trying to give you some perspective as a sibling. It's not that if there was a cure that I would deny my brother that chance, it's just that it was not important to me.
My journey involved making sure my brother was happy, that I took some pressure off my parents, and that I made sure to have time for my own life. I could have easily let my brother's situation consume my very existence, but luckily I escaped that. It doesn't mean I love him any less, it just means sometimes my support is a phone call or skype versus being around to take my brother putt putt golfing and to Applebees for a burger. For me, my brother is easy. I know what makes him happy, I know what he shouldn't eat, and I know what he wants to eat. I also understand that he is a complete teenager, and sometimes he will be moody and only want to talk to his girlfriend. I understand that underneath all those behaviors and anxiety, is a typical child trying to make his way. He is not a child to be coddled, he is my independent brother.
Do not underestimate how much your typical child will grow up. They will grow up so fast. Be so much wiser than their peers. And they will have accepted their sibling and their situation LONG before a parent. It doesn't make it better or worse. The sibling is not therefore some grown adult at 12. No. They are still children. But their journey is very different than yours. Be honest. Be upfront. And for gods sake let them be a kid and have their own life. Feel free to step in, because acceptance can become all consuming. And then your typical child won't fulfill any of those crazy dreams you have for them. :)
Until next time. Keep calm, and carry on.
