One of the very first things you are going to think about when you learn your child will have a limb difference is what your child is not going to be able to do. That is understandable and human nature. It is also a waste of time and energy – and you should do your best to get rid of those thoughts immediately. Every single one of us is predisposed with things we can and cannot do. It’s just the cards we are dealt in life. What you need to do is focus on what your child can do.
My wife, Kelley, and I found out about Clay’s condition shortly after his 20-week ultrasound. Like his older sister, Sierra, we decided to wait to find out the baby’s gender until they were born. So, whenever we went to ultrasounds we very purposely avoided spending too much timing looking at the screen. At the 20-week ultrasound for Clay, things did seem a bit off based on the behavior of the ultrasound technician. But, we did not find anything out at this point. Our intuition was confirmed when we were told to schedule another pre-natal ultrasound. This was concerning, but we were assured that most of the time these were precautionary. In our case, we found out there was an issue with Clay’s development. He was missing his right leg from just above his right knee.
One thing I remember clearly from my first race – the Bellco Colfax 5k – in 2013 is how utterly exhausted I was upon finishing. Zach and I went to Denver Biscuit Company afterwards and all I really wanted to do was take a nap (even before devouring my sleep-inducing biscuit with sausage, maple syrup, apple butter, and a fried egg). I had just started running about 2 months before, and my pace of 11 minutes per mile was the fastest I had ever run that distance before. I was super proud of myself for what I had accomplished.
If you had asked me back in 2013 whether I thought I would ever run a half marathon or hold anything faster than a 10 min/mile pace for anything longer than a mile, I would have laughed at the thought and moved on to a new subject. However, time has shown that the 2013 version of myself was utterly and totally wrong because that 2013 version of myself discounted the value of hard work and determination.
This past Saturday I got to be the test subject for a study being conducted at Regis University in Denver. I was their first amputee subject, so I got to be the guinea pig (which tends to happen a lot in my life). This particular study was gathering data to show the differences between running on a walking prosthesis versus a running prosthesis. They were testing muscle firing, so I had electromyogram (EMG) sensors stuck on various parts of my body. They were also looking at biomechanics, so I had LED sensors stuck all over me as well. Once they got all the gear on me, I looked like a human Christmas tree.
In addition to missing a bone in my leg, part of the condition I was born with means that my left leg is 7+ inches shorter than my right. Nearly 3 inches of that difference is in my femur (the part of my leg between hip and knee), and that difference gets made up for in height by making the part of my prosthesis longer so that when I stand I don’t have one leg that’s shorter than the other. However, a negative side effect of this is that it means my left knee comes up way higher in my upstroke than my right, which leads to me kicking myself in the chest – especially if I’m in any semblance of an aero position.
By Emily Harvey
For this blog I interviewed my friend Alina Miller who elected to have her leg amputated following a traumatic injury. Everyone’s situation and circumstances are different, but hopefully others might find Alina’s story helpful in their own journey whether that journey involves choosing between amputation and saving a limb or any other tough decision you may be having to make in your life. Alina has come out the other side of her tough decision as such a strong and beautiful woman, and I am so lucky to call her a friend.
The territory of the unknown is one often accompanied by fear. This was the case for Kelley and Steve, when at 20 weeks into their pregnancy, they learned that there was an issue with their baby; its lower right leg had not developed correctly. The baby’s femur, the bone above the knee, was where the limb ended.
This unexpected news was difficult to process at first. They worried for the future of their child. How were they going to prepare for this? What questions did they need to ask? Suddenly, Kelley and Steve were thrown into a world they knew little about: the world of limb-loss and limb-difference.
As a prosthetist, there are constantly new products coming out that I have to evaluate and decide if this is better or different in any way. I get somewhat amused at the names that manufactures call their feet – the Panthera, the Triton, the Truper, the Renegade, Elation… A new one that I recently encountered is called the “Game Changer.”
Being perceived as a strong and independent woman is something I have always clung to as very important in my life, even when I was a child. I don’t know if it’s something inherent or something I acquired as a kid growing up with a disability, but regardless of the genesis, it’s something I recognize in myself. Asking for help has historically been tough for me because I’ve always thought that if I ask for help it’s a sign of weakness, and that tarnishes my self-perception of being strong and independent.
Ironic then, that I’ve chosen triathlon as my sport of choice. Perhaps it doesn’t immediately make sense that triathlon would force me to let go of my above-described view of myself, but let me explain . . .