Clouds, May 2010

Clouds, May 2010

Thursday, June 22, 2017

brighter by the dozen

Funny how raising your own child doesn't prepare you for when they grow into a person the size of a small adult. It's that stage when they're still a kid, but they stand nearly eye-to-eye with you. It's not as if it happens overnight, despite the expression, yet I look at these pictures & I can hardly wrap my mind around how we got from there to here. 

And how surreal that we did not yet know about a condition called fragile x when the first photo was taken, & we wouldn't even hear those words until five months later. But throughout these years I have never stopped learning from Hayden. To this day most of what I need to know about a person I can tell from how they respond to him, how they interact or react. Hayden also has the ability to show people their own true colors-- I had no idea how little I knew about my own personal strengths & weaknesses until I became his mom.
I can't imagine any other child opening our eyes as much as Hayden has.
To the person with the purest heart I've ever known, the braver of the two of us (who I can always count on to save me from spiders), the one who will never be too grown up for cuddling, the one who I've always looked up to & pretty soon I'll be doing so literally... our birthday wish for you is that as the year goes on it only continues to get better & brighter.
We love you beyond measure.
12 months / 12 years

Happy Birthday H-man!

Tuesday, June 13, 2017

anonymous thank you

I was walking through the second to last aisle of the grocery store when I heard a woman say, "Heeey..." I turned around and it was someone who knew H from back in elementary school. We hugged and she looked at me with a crinkle between her eyes and asked, "How is he doing?" I get that a lot because people are just as surprised as we were that this school year is coming to a close so very different than how it started. All I can say is we ended up standing there talking for so long that I hope the steaks in her cart did not have to be thrown out. She told me how much she misses Hayden and that his picture is still on her refrigerator. (I get that a lot, too, because there was always someone to thank for something & photo cards were often my first choice.) But anyway, she told me that with all the behind-the-scene stuff going on at the school, or this, that, and the other thing... at the end of the day seeing Hayden's smile would always give one back to her. I looked at her and I said please know it is people like you who always helped me sleep at night. Because that's aaaall Hayden. It's not because I'm an involved parent, or because I advocate, and volunteer, and give fragile x talks... Hayden draws people in completely on his own.
So when we have a fragile x sort of morning such as the one we had yesterday, when it took Hayden about thirty minutes to get in the car to leave for school, and about another twenty to get out of the car and into school, and therefore his day was a good hour off schedule... or when there's an afternoon like today when I hop on the highway to drive to pick him up and there's construction, and then an accident, and then another accident in between the construction and the first accident, and I finally get to the school so late that his aide had to leave so he was hanging out with his teacher... Let me tell you, moments like the one I had when I ran into that former staff member are what help keep me standing. Because there are plenty of other days when I am upset and tired and frustrated and emotionally drained. And then someone like that (like you) stops me in the grocery store with the most endearing eyes and kind sentiments about my son... those are the moments that reinforce for me that everything will be okay. These are the people who see Hayden-- who have always seen Hayden-- for who he is and not for his fragile x. At this time last year I can tell you we never, ever could have imagined we'd be where we are now. So to each and every one of you who have helped us through this most trying time (you know who you are), thank you for reminding me what makes our community our home. --