Every child has a story and empowering them to own their story is what creates authenticity and grace in children as they grow and change. In December, I asked my clients to nominate a child (or family) that they felt was deserving of a session as a way to give back to this world what it has given me…love, authenticity and grace.
My husband Erik carefully read through all of the nominations and chose the story of Connor. This past weekend we finally had Connor’s session and it was beyond awesome. I had tears streaming down my face as I drove home…my heart was filled with love and appreciation for the gifts we are given daily. I still need to pinch myself sometimes when I realize that this is my life, it’s so good. Seriously, look at him…
I asked Connor’s Mom to write his story for you, I think she tells it perfectly….
Me? I just got to squeal with delight as I photographed him…
Connor’s story is very unique. Connor was born July 11, 2011 and shortly after was diagnosed with Arthrogryposis, a disability that affects mobility in muscles and joints. However, Connor’s journey began a long time before birth. During pregnancy, multiple abnormalities were found on the ultrasound and we were faced with a lot of uncertainty. Test after test were performed nothing resulted with any answers until a micro-array test displayed that Connor has extra genetic material on three chromosomes. While this still left many things up in the air, the test also gave explanation to why there were abnormalities, but not what they would be. On the other hand, we were told that babies with extra genetic material typically do not make it to birth and that I would more than likely miscarry in the coming weeks.
That fact in itself makes Connor a true miracle. Connor did make it to birth and has been an inspiration ever since. At birth, Connor’s legs were wrapped up around his waist with bilateral club feet, and both hips dislocated. He also did not have the ability to bend at the elbows, and had his hands curled outward at the wrist in clenched fists.
The doctors went to work on Connor right away and found that many of the initial concerns during pregnancy could be ruled out. Connor had Arthrogryposis and a long, difficult road ahead of him, but if anyone can do it, Connor can. He has, after all, already beaten the odds once.
Connor’s legs were casted at two weeks old and every week after that until he was four months old. At one month old, he began occupational therapy twice a week and has continued with that ever since.
At three months, Connor had his first of what is expected to be many surgeries, a bilateral heel cord release to help give him the ability to flex his feet. At four months, Connor began wearing a Ponsetti foot brace with a bar (We call him our little snowboarder.) and began physical therapy twice a week.
It may sound like a lot for such a little guy, but Connor never complains (Okay, maybe he complains a little bit when stretching at therapy.). His personality and determination are infectious. Connor is smart and observant –perhaps a more appropriate word is nosey– and loves to play just like any other ten month old. He has come a long way in such a short period of time and with his determination, he will continue to persevere. Connor has a lifetime of therapy and doctors appointments ahead of him, but he has a strong will and a big heart.
This is a small part of his journey, for Connor, his life has only just begun.
I agree with his Mom, I think he’s one of the strongest kids I have ever met.
They wouldn’t let me take him home, but they did say I could photograph him again someday.
I jumped for joy.
Thanks for the fun Connor, I think you are amazing.