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!
5 comments:
You got the diagnosis on Mother's Day? Oh, oh, dear. To have to remember that on Mother's Day every year must be tough. But you're right, our kids are loveable and sweet and every little thing is worth celebrating, and anyone who doesn't get that, can go kiss a garbage can. ;-)
Oh, no I didn't get the actual news on Mother's Day. It was on May 12 of 2005. Although I'm sure of exactly what day of the week it was, I'm pretty sure it was right before the weekend of Mother's Day.
Your kids are definitely beautiful! I am not a parent (yet) but I work with kids with special needs, and have just graduated with a degree in special ed teaching. I've noticed that the more time you spend with kids, the more you just stop seeing their special needs and just sort of see them as their own, unique, individual selves! If those people staring at your kids could spend time with them and get to know them, they'd realize that there's really no reason to stare!
When I read abt Ian kissing the trash can I laughed so hard, I scared my dog! I can so totally see him doing that!
My son and his wife will find out this week or next if their daughter, Rachel, who is 3, has fragile X syndrome. She was diagnosed with severe autism this week. They are now worried about their son, Luke, who, like his sister, has a huge head and is really long for his age of 5 months. My son, Jesse, called me today weeping because it is dawning on him that Luke is very likely to have the syndrome. I am writing this to ask for prayers. My daughter-in-law does not know about the possibility of Luke having this. She is still in shock about Rachel. They are both in their early twenties and are having to deal with all this alone. They live in San Angelo, Texas, where Jesse is in the army. (He was about to get medically discharged from the army due to severe back injuries sustained there. he has already had one surgery. He has decided to stay in the army, no matter how much pain he has or how it damages his back because that is the only way he can get ABA therapy for Rachel. Please pray for them I am in Tennessee and cannot help them. Thank you.
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