Clouds, May 2010

Clouds, May 2010

Tuesday, April 23, 2013

thinking forward with our children

At last year's 13th International FX Conference, hosted by The National Fragile X Foundation (NFXF), there were a series of interviews conducted-- mostly, but not limited to, parents & grandparents. They are part of a Forward Thinking campaign, & the video interviews are being released throughout 2013.

So far 12 of them have been uploaded & are available for public viewing on the NFXF's youtube channel. I wanted to take the opportunity to encourage everyone to watch them. They range in length from about 2 1/2 minutes up to 4 minutes.

Dan's was released yesterday, & I've posted it at the bottom of this blog entry. We were in the conference room together during our interviews so I remembered some of what he said, but it has been a while...

I won't even bother to say that I am so impressed with the way he spoke, because from my perspective it stands to reason... he is speaking about our son... his idol... his reason for living, breathing... & for anyone who knows Hayden... you know the feeling is mutual.

I could say there's an unconditional love between these two but it's more than that. Dan is Hayden's jungle gym, his sensory board, & his best friend.

I have never seen a bond between a father & son such as these two have... even at almost 8 years old Hayden is still ecstatic when he sees Dan pull in the driveway & there is often jumping & screaming involved when his Dad walks in the door. (I bet for most kids this type of enthusiasm tends to taper off sometime past the toddler stage, but not for H-man.)

These are our children.
This is who they are <3 
This is about them.

Each one of these stories is incredibly worthwhile, & I do hope you view each one of them. And share them.

Without further adieu, in order of release, here are the first 12 interviews:

"Everything can be OK... you can find those people, those teachers, that love your children as much as you do. And you can find that doctor that will do anything to help your family to get through this."
-Talitha Humphrey, Mom
Watch Talitha's Story

"My wife is just an amazing person. She has done more, learned more... become such a stronger person being part of the fragile x community."
- Mike Makris, Dad
Watch Mike's Story

"My family means everything. I don't feel like I have a place in this world without them. They are everything, really... the air that I breath... the oxygen... they make my life complete & full."
-Jaime Hudson, Mom
Watch Jaime's Story

"[This experience] really helped me to be more of a compassionate person... It's really interesting how this one situation can change your whole perspective about 'different'."
- Tamaro Hudson, Dad
Watch Tamaro's Story

"When we contacted the National Foundation we felt a lot better after that... I am a Links Leader & I know I can call any other Links Leader & say, 'Hey, you know I have this problem,' & they would be there with me."
-Denise Devine, Mom
Watch Denise's Story

"He has the biggest smile, the best laugh, hugs, kisses... lots of things that he can give us back without ever saying a word. My family means everything... I would always do anything for them. They know that. Everyone knows that."
-Megan Dotson, Mom
Watch Megan's Story

"They are very loving [grand]kids. When they get up in the morning they're just very happy kids & they never wake up in a bad mood. We feel fortunate because we can help them & we do. We assist & help as much as we can which my daughter fully appreciates."
-Mike Simpson, Grandpa
Watch Mike's Story

"I have fragile x syndrome. I have a loving mother... my dad's awesome... my brother is the coolest brother... & they understand who I am. And they help me through difficult times. And they help me with my many victories that I have. Family is there to support you & they support me for who I am, & I support them."
-Dillon Kelley, Self Advocate Extraordinaire
Watch Dillon's Story

"I had often been the person talking to parents about what's going on with their children, so it was the first time I was the parent sitting on the other side of the desk. [But this] has made me change many things in my life for the better. Absolutely. Ultimately I just think you want your children to be happy."
-Kathleen Quinn, Mom
Watch Kathleen's Story

"They want to be loved just like the rest of us. They want to be loved. It's been... it's just great... the amount of support we've gotten from our friends & our family, & from people we don't even know that want to know more about it."
-Rachelle Gatewood, Mom
Watch Rachelle's Story

"My grandson is now 15 years old & he is doing wonderfully. You see hope. And you see a life ahead of him of happiness & fulfillment. The most positive part of my fragile x experience is learning to understand what patience is all about. And understanding how you can work in a positive way with [these] children."
-Penny Paikin, Grandma
Watch Penny's Story

"I think you step back & just appreciate life a lot differently & just appreciate the little things. What I hope for the future for
my son is that he's able to live a happy, productive life, in whatever capacity that means for him. Our son... he's an amazing child... he's very happy... & life does go on."
-Dan Capela, Dad

Watch Dan's Story


1 comment:

  1. Love this! I have FXtraspecial (on blogger) I will be following your awesome blog! You are a great writer!