Monday, July 15, 2013

I'm Not Scared of Nothing! No way!

That's not usually what you say until you get to the end of something, so if you want to know why my post is titled that today, you need to read the whole post... or you can cheat and skip to the end... BUT, I highly recommend reading the whole thing for the full effect. Trust me, your heart will be fuller for it.

OK, so first off, for those of you who are still learning about what all of Fragile X Syndrome entails let me tell you this specifically from the Nation Fragile X Foundation's WebsiteThe majority of males with fragile X syndrome demonstrate significant intellectual disability (formerly referred to as “mental retardation”). Disabilities in FXS include a range from moderate learning disabilities to more severe intellectual disabilities. Physical features may include... connective tissue... , flat feet, ... , double-jointed fingers and hyper-flexible joints. Behavioral characteristics can include ADHD, ... , social anxiety, ... , poor eye contact, sensory disorders...

When I read through those things (on top of all that Brother has low muscle tone) and then think of sending my son on a 5 day backpacking, rock climbing, repelling, water hiking, mountain biking adventure my logical side says, "No way!!!" My kick Fragile-X-in-the-butt side says, "Oh he is SO going!!"

I mostly can say that though, because his dad volunteered to go with him. I knew Marc would be there with him every step of the way so I wouldn't have to worry about him so much. Otherwise, I am sure my logical side would have won out. The whole double-jointedness/low muscle tone thing pretty much takes the take on saying "no" to rock climbing.

Well, I mean, you remember my little worry in my last post when they went repelling on their last backpacking trip... I said, "Brother didn't have enough strength and coordination for [repelling] because there was no one to belay. They had to do the belaying themselves. Hopefully they will include something that he can do next time. He did have fun watching the others though." I can't wait till you see the video to see what they did to include him!

The first day they got to Zion's National Park they hiked 7 miles into their destination in some very hot weather and they all felt it. This is the part where, I think, Marc really needs to win some kind of award. Brother's low muscle tone and anxiety started to play a part and he refused to take his pack any further after just a short while and Marc ended up taking Brother's 20+ pack on top of his already 50+ pack in the heat for the remainder of the 7 mile hike in. It was miserably draining both physically and mentally.

They finally came to a river and that is where they were all able to get some relief from the heat. Some of them even enjoyed the mud a bit, some enjoyed it more than others.

Marc was pretty worn out and hot on that trip in so this really was the only picture he got on the way in. You can see how worn out Brother is even having not carried his pack the entire way.

Once they set up camp Marc was able to take a few more pictures.

This one, is one of my personal favorites, just because it shows Brother just like any of the other kids... I love it!

Of course you will see some beautiful scenery shots.

The next day they hike around in the water. I surprised to see how brave Brother was with that.

I was really proud of Brother on this section here, he was so brave that Marc had to keep
taking pictures because he was so proud of him for doing it on his own. 

They packed out the next day and Marc said that Brother did so much better. He said he was surprised how much he packed his pack on his own the second time around. Not sure exactly why, maybe he had seen all his peers doing it and decided he could too and maybe he felt bad that his daddy had done so much the day before, whatever it was, he did it and it made Marc very proud.

This is some close buddies, Elvis and Jim

See that look on Brother's face? It may look like a scowl, but it really is a smile, he just didn't want his picture taken...

This is Marc hitchhiking his way back...

I don't know that there really is much else I can say in this post.


The rest of the pictures and the video at the end speak volumes that I cannot type out.

I wish I could have been there to put more meaning behind my words and not just what Marc has told me.

All I can really add is this:

I want you to notice the smile on Brother's face and if it's not a smile it is a hidden one because he is anxious in front of the camera (trust me, there is always a smile).

Notice the pride in his father's eyes.

Enjoy the scenery.

In the last video you will hear his name, I know, but I didn't want to edit anything for the reason of wanting you to hear all that was being said. The cheering on and the sincerity of Brother's fear and triumph is what brought me to tears.

Zion's Rock from Rachael on Vimeo.

4 remarks:

Barbara Rozier said...

Oh Rachael, this was so awesome! The video brought smiles and tears while I was watching it, I felt so bad for him...but he made it! :)

Paola said...

You and Marc are wonderful parents. This made my day!

Rochelle said...

LOve this! So cute!

Bethany said...

That's awesome to see! I've heard so much about that campout it was great to see all those great pictures and re-live Brighton's moment of victory!