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.
At the time, this felt to be devastating news. It’s one of the very few times in our adult lives we’ve had to deal with something like that, and certainly the first that so closely impacted our family. We walked around our neighborhood for a long time and tried to figure out what this meant for our lives. We were within weeks of relocating from San Diego to Denver and in the process of selling our house. How does this impact that decision? Should we attempt to call everything off? It was a very emotional first 24 hours.
What we came to realize though is that it wasn’t devastating news. It only felt devastating because we were portraying some life for our child that was not based on reality. Neither of us knew anyone with a limb loss or difference, so we just made assumptions about what his life would be like. What we came to realize, and still do to this day, is how lucky we are. We are lucky because we have this beautiful and amazing child who will do great things in life. We are lucky that whatever caused Clay’s leg to not develop did not prevent him from being born. And, just like his sister, he has made us happier and better people in ways you don’t really expect as a parent.
The next day after the pre-natal visit we received a call from our OB/Gyn to discuss the news. We were given options, including terminating the pregnancy. We decided that was not the path we were going to take. What we were going to do was reach out to family and friends and let them know the situation. Then, we were going to educate ourselves about what life would be like for Clay. Our first contact was a cold call I made to Challenged Athletes Foundation in San Diego*. I knew of CAF because I competed in races they sponsored. I had a great conversation with a gentleman at CAF. I told him my situation about our move and he put me in touch with Emily Harvey at LIM359. It was on our drive to Denver during our move that I first chatted with Emily. I also reached out to a coworker whose sister had a child around 10 years old that was missing part of his leg. All of this was super helpful. Because you learn so much and you meet so many people – and you realize that a limb difference doesn’t mean your child isn’t going to be happy and do all the same things as any other little kid. And it doesn’t mean your kid is going to be some kind of outcast or made fun of. And if it’s any indication so far, it’s actually kind of the opposite. Because right now most times Clay is the hot shot of the playground from other kids being curious about his leg. Kids are curious in such a great way and it’s really fun to watch that.
Clay is now 2.5 years old and his older sister is 5. While their personalities are different, there is not a whole lot of difference in our experiences with either of them through these first couple years. Clay is just as happy a kid as Sierra was and is. He does the same things. He has just as much fun. He plays on playgrounds. He goes swimming. He hikes. He’s a great rock climber. He’s just as curious. He gets in just as much trouble. He pushes our buttons just as much. It just takes a few minutes longer to get out of the house (which takes forever with any kid) because we need to put on a prosthesis. But, it does not bother him or hold him back. So there is no reason for his condition to bother us.
My takeaway for expecting parents is to educate yourselves. Reach out and meet some folks who share similar differences as your child: kids, adults, whomever. You can see a glimpse of how facets of life are like for individuals with limb differences. And also realize that it’s not really that different. The scary part is not knowing what life will be like. You can remove that scariness by learning. We’ve since become very involved with LIM359 and that has, and continues to be, a great experience for us. I’d encourage folks in the Denver area to do the same. If you’re not in the Denver area, feel free to give us a call or an email if you would like someone to chat with. Or find someone or a group in your hometown. If there isn’t one, maybe think about starting one. That’s what Emily, Michelle, Whitney, and Allison, our founders, did.
We no longer worry about what life will be like for Clay because he is missing a leg. Let me rephrase that – as parents you’re always going to have some degree of worry about your children. But, for Clay, it’s not because he is missing a leg. It’s going to be because he’s not doing his homework, or he misses his curfew, or, God help us, when he’s old enough to drive.
Steve
Steve.Simon.PE@gmail.com
*Quick note: During that conversation the gentleman I talked to, who lost both legs early in his adult-life, explained to me how that ended up being the best thing to happen to him – because it put him on a path in life that he would have never ended up on had it not happened. And this path he is on in his life is making him very happy and fulfilled. He specifically told me if he had a choice between his old life and his new one, he’d choose the new. So that was a very powerful initial conversation to have within a few days of first finding out about Clay. We’ve since heard similar stories from others.
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