As the day comes to a close, I reflect once more of this date 7 years ago...the day my life and dreams changed forever....our first (of 3) diagnosis of fully mutated fragile x syndrome. To this date, I still remember it as if it were yesterday. I remember my mom in town for Mother's Day, sitting on the couch next to me when I received the phone call. I remember the confusion, the fear, the anger, the sadness, the unknown.
Now seven years and 2 more diagnoses (sp?) later, I still fight the same thoughts, but only occasionally now. Our pastor did a teaching last week about the grace of God that was fabulous. He defined the term on a whole new and more mature level than I had ever heard before. "Grace is God's empowering presence enabling you to be what God has created you to be and to do what he has created you to do." I would say this fits perfectly with how I have survived the last 7 years....His empowering presence enabling me.
I hate fragile x. There, I said it. But I love, love, love my children; every tiny ounce of them! While 'typical' families celebrate grand accomplishments because the 'little' things just happen naturally, I have learned to celebrate every accomplishment, knowing that nothing they do is to be taken for granted. I have learned that I don't have to stop and give excuses to every person that looks at me if Benjamin screams in the store or Ian decides he's going to kiss a trash can (yes, actually happened). Do I feel a bit uncomfortable? Ummm, sure. But I get over it. And I don't mean to sound rude, but if I can get over it, so can those people looking that know nothing about my child. I have learned not to 'judge' other parents when I see their child 'misbehaving' in public. To be totally honest, it kinda makes me feel more normal. :) I also have a lot more compassion for them, and if they see me looking, I just smile to let them know it's okay. There's so much more I've learned as well.
There are still so many unknowns, but I try to take them one day at a time. Some days I even make it through without thinking about one of those unknowns. I try to remember the 'knowns'. I know my children were meant for me. I know I was meant for my children. I know I love my children. I know they love me. Seriously, what more could I ask for? Just look at those beautiful, happy children at the top of my page!
