Tuesday, August 4, 2009

One Year After the Diagnosis


It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.

7 comments:

Holly's Mom said...

Great post! I suspect a journey of finding out when your child is a toddler, is so much harder then always knowing, you guys seem so put together! I also feel so lucky to love in a place where there are so many resources, and I know I parent so differently now then I would have otherwise, every moment and development is a treasure.

Miguel said...

Beautiful post, Sarah!

Grandpa Bill said...

Thanks, Sarah. A challenging year !
Grandpa Bill has tears in his eyes after reading your post.

FXSmom said...

I didn't realize it had been only a year!! You guys have adjust to "Holland" well! :o)

Sara said...

I agree with Miguel--a beautiful post. Aspirations for all of us to live by. Love to you all.

Jo said...

I cried after reading this and am mad at myself for not writing it myself! You are such a great writer, Sarah....If I knew you in the "real" world, I think we'd be great friends. You are so positive.

Lisa Gioia-Acres said...

You are an inspiration! Quinn is beautiful.