Double Take (A Book Review)

We've read a bunch of books by people that have numerous limb differences lately, and we came across one we both really enjoyed and thought was the easiest to read. It's called Double Take: A Memoir by Kevin Michael Connolly. Kevin was born with two full arms and hands but no legs, and his memoir is about being an "object of curiosity." It's an excellent story of his upbringing, how his parents raised him, and what he has accomplished in his young adult life (he's 26 years old). Kevin traveled around the world on his skateboard, and ended up taking pictures of 'staring people.' He got tired of being stared at, and pointed his camera out from his hip and took a picture of someone staring. He then proceeded to take thousands of pictures of people staring at him all over the world - Asia, the Middle East, Europe, the US, etc. He's created a photography expedition called The Rolling Exhibition, which you can check out at www.therollingexhibition.com. We loved his memoir because its so real - full of stories and true life for him. We wanted to share a bit from the book, found on page 171:

"...I don't think of myself as 'disabled.' As I interpret the word, you are only disabled if you are incapable of overcoming the challenges presented in any given situation. I might be disabled when trying to haul a hundred pounds of concrete up a flight of stairs, but to my mind, I'm perfectly able-bodied when I am skating around New York City. Being disabled is also a matter of choice. Anything that you try to hide from the world also imposes a limit on you. If you don't want to risk showing off your wobbly knees or clumsiness on the dance floor and decide to sit on the sidelines, then you are unable to dance, thus, disabled."

Oh yea, and not only is Kevin a photographer, but he's also a professional skier - won silver in the X-games a few years back. Crazy! Check him out.

A Day with the Brains

by kristin

Last Friday we had a good "day with the brains" at Children's Hospital Colorado. My mom came over in the wee hours of the morning so we could get on the road as my MRI check-in was at 8:15am in Denver. MRIs are crazy things! I've never really had any medical things wrong/surgeries/etc, so the whole thing pretty much freaked me out. That...and the fact that I'm pregnant and concerned about possible effects on the baby long-term. I gave those concerns to the Lord and trusted that all of the Children's doctors know their stuff. They wanted to do a fetal MRI because they wanted to see the baby more clearly and make sure that they didn't see anything internally 'wrong', confirming that they wouldn't need to do any sort of emergency surgery right after birth.

You have to lay on your side when you're pregnant, because it's bad for you to lay on your back for so long. I was pretty much squished and then crammed up inside the machine on my side, with these huge brackets (no clue what they were called) embracing my belly on all sides. I made Jason sit in the room with me (yep...wanted him close-by)! It was loud...and hot...really hot! Baby boy kept moving around too, so picture 're-takes' were frequent. The machine gathered images for a little over an hour (yes, one hour without movement crammed into a machine!), and then I was done. I was famished, and couldn't get out of there fast enough to get food! Making a prego person wait to eat since 9pm the night before with an MRI that isn't finished until 11am is down right wrong. Fortunately, we had a few hours to ourselves after that. We went out to eat, did a little Easter basket shopping for the kids, and cruised the old neighborHOODs (Northern Aurora for those that didn't already know). That afternoon we headed back for the family meeting at Children's with the 'brains'.

Back at Children's, our escort met us at the door. We headed up to a conference room where we were greeted by eight doctors sitting around a table - all heads of departments, programs, and this and that. It was amazing to witness such an impressive group of medical professionals. They had already been together for a while going over our test results, previous ultrasounds, etc. This was our chance to hear their take on things, and ask whatever questions we had. To our absolute relief, it was confirmed that everything internal with our little guy is fine! Praise the Lord! Many of the things they presented were much of what we had already come to know. What they offered in addition, had a lot to do with exploring how to adapt this baby's environment down the road. This was very good to at least start to hear and think about on a deeper level. They also confirmed that we should be able to deliver in Colorado Springs instead of at Children's Hospital, which was also a blessing. We absolutely loved these doctors in the room, and were so encouraged by them. Their hearts seemed almost bigger than their brains. One of the most impressive statements by any of the doctors was, "It is not a disability for this child, it's the way he's born!" It was good to hear what we had already been telling ourselves, that this baby is incredibly perfect in every way. We are overjoyed at the opportunity to be his parents.

In the end, we're quite unsure about what our future looks like with Children's Hospital Colorado, but it's fairly certain that we'll cross paths with these doctors again sometime. They all said we could contact them whenever we needed and were glad to help in any way. Most importantly, they seemed to care deeply for this baby and his welfare. We loved and appreciated them so much and will most assuredly be in touch with them again. In the meantime, they are linking us up with a family who is in a similar situation as ours - a family that has lived with congenital amputation for quite some time - that can potentially help answer some of the day to day questions we have. We're very thankful for this opportunity and look forward to learning from them and their journey so far.

  

p.s. Jason will be riding in the Courage Classic this year to support The Children's Hospital...more to come.