It’s really the small moments in life that can break you.
I like to think I’m a tough cookie. I’ve had a pretty shitty last few years and I want to believe I emerged from the embers like the phoenix, to overcome and conquer. What I used to think is a hokey saying “Everything happens for a reason blah blah blah” – now, I do believe that. Mostly. When Owen was first diagnosed in 2010, I spent months awake at night, worrying and crying about his future and the future of myself and my family. I. could. not. sleep. Finally, being a therapist, I used a technique I teach my own clients called “Cognitive Behavioral Therapy.” I started by refocusing my thoughts by ‘being on a beach’ in my head, using all my senses to engage my brain and stop intrusive thoughts. I became so good at it that now I can just flip the switch in my head and shut off the thoughts. And frankly, I’ve never been much of a worrier anyhow.
We Fragile X carriers come with our own host of related issues. Fragile X is relatively newly diagnosed disorder – it has only been scientifically identified for about 25 years. Most research has been conducted on our ‘full mutation’ children and very little formal research has been done on us carriers. Some symptoms are proven – early menopause and ovarian insuffiency, while there are many other anecdotal symptoms suspected to be common in carriers – immune disorders, mood disorders, joint issues, learning disabilities.
I like to be basic and break us down into two groups “Anxious, Anal and Organized” and “Wild Women.” My own research (cough*my friends*cough) has shown me that some carriers are very anxious worriers, with an attention to detail, and many are successful and over achievers. Then there are the ones like me – a little more free-spirited, disorganized, with a history of fun and frivolity. Really, I think we are all the same, but us ‘Wild Women’ developed different ways of coping and became more rebellious. I have never been one to think very long term, I’m impulsive and tend to focus on the ‘now.’ This has helped me in dealing with Owen’s diagnosis – I try to do all I can for him ‘now’ with the hopes it will benefit him ‘then’ – language development, behavior management and skill building. This also helps me deal with my own grief and sadness – I will not think about the future….his future….that could be filled with judgement and teasing and dependence on money from the state and care from strangers and oh god what about when I die and…..FLIP THE SWITCH. Off. I try not to think or talk about this stuff. I have enough to deal with on a daily basis, it does me no good to worry about the uncertainty of the future. And I recognize and embrace the richness that has come into my life due to his diagnosis – shift in priorities, being happy in the NOW, and the many wonderful people I call friends, all members of my FX family. My life has a meaning now that it had never had before (right Cindi?!!?).
And sometimes, I forget there are others who must also grieve and cope with his diagnosis.
My daughter Bridget’s bus stop is directly in FRONT of my house – quite a beautiful thing for someone slightly unorganized (slightly? HA!) and not a morning person – I MAY wait until the last possible minute to wake up. Owen had already left on his van to his ABA classroom, which is in a different school within our district. Bridget was sitting in a chair in front of the window, waiting for the bus (why would we wait outside? It’s COLD out there!). She was watching our neighbor play with his little sister – Cam is in 3rd grade, like Bridget, and his sister is in kindergarten – just like Owen. Bridget asks me “Will Owen ever go to the same school as me? Because that is what other siblings do when they get old enough.” And I froze. The mom in me wanted to bandaid that question – apply something soothing and reassuring – the child therapist in me said to shut up and ask questions. about HER feelings. The mom in me won and I rambled about how he maybe will never go to her school, but for her to think about the many kids that would be in the town middle school, how many people we know in the district, and how she will know SO MANY kids when she is eventually in the 2000 student high school. I realize now I didn’t say any of that for her, but for me.
I have never cried about his diagnosis in front of her. I have never talked in front of her about my grief or resentment. I have always tried to be a good role model, be resilient, teach her about empathy and acceptance and diversity. I have tried to show her through my own behavior that we love and accept Owen for who he is – truly loved, accepted, flawed and unique – just like she is. Just like we all are. Focus on the positives – and I suppose my uber-liberal-hippie-social-worker self finds that easy to do – I do it at work, for my clients, and I practice it in my life. We are ALL equal, regardless of skin color, sexual orientation, social status, or disability. It doesn’t matter ‘what’ you are, it matters WHO you are.
But that question – that one simple question – “Will we ever go to the same school together?” – it broke me. There was her loss laid out, her grief, wrapped up in those few words. What she will sacrifice – the normality of a typical sibling. Parents just want to give our kids everything they deserve – education, a happy life, a kitten and an iPad – and here was something I couldn’t give her. Here was something that I had robbed her of – my genes did this. MY genes. No bandaid is big enough to cover that crime.
Hours later, driving, I broke into tears. Tears for FX are infrequent for me – but there they were. And here they are again, just writing these words. I can handle the loss. The grief. But GOD – to think of her loss. It breaks me and my heart aches for her. I know this is just the beginning of her journey – she will have a lifetime being his sister, while I will only have a half a lifetime with him.
And as much as I want that huge imaginary magical bandaid, I know she is allowed her voice in this grief, and her own losses. I just wish I could protect her from them.