Written by: Stephanie Catros
I was honored when I was asked to write a blog post this month in celebration of Limb Difference Awareness Month. My husband James and I are the proud parents of Milo, a four and half year-old active, witty, energized, kind soul who just happens to have been born with a partial right foot and who has been happily attending LIC Kids Gymnastics for the last two and a half years. Raising a child with a limb difference has been a tremendous enhancement to our lives!
My husband and I found out that Milo was going to be just a little bit different when I was 20 weeks pregnant. At that time I was working a fairly stressful job and felt that I barely had time to be pregnant, much less pregnant with a child that would have extra needs and demands due to a physical difference. We felt overwhelmed and under-prepared for what was to come; however, the universe works in magical ways and the long gestation period allowed us time to prepare our hearts and minds to be ready for Milo when he came into this world.
During the pregnancy there were a lot of unknowns about Milo's physical condition. We knew that he had a severely under-developed right foot, but we weren’t aware of whether or not his ankle would be able to move or if it would be locked in place. If it was locked in place, we needed to be prepared for an amputation surgery, so we organized an amazing medical team that would be ready to complete the surgery after the delivery if need be.
When Milo came charging into this world on July 29, 2014, the doctors examined his precious little body and informed us that not only was he was a perfect 6 lbs. 7 oz., but that his ankle had mobility! It’s weird - we spent 18 weeks obsessing over what his foot would look like and what kind of needs he would have based on his difference, but the second he was born all of that disappeared and we couldn't stop staring at our beautiful baby (whose most beautiful part was his very special foot). The first few months were difficult. We took on a whole new vocabulary as a family - prostheses, prosthetists, congenital amputation, sound foot, amputated foot, just to name a few. With Milo being a summer baby, I wanted the freedom to take him out without any shoes or socks, but obviously that lead to a lot of attention and curious questions from bystanders - What happened? Does it hurt? Will it grow? Will he ever walk? At first, I felt so protective of him. It's hard to deal with those kinds of inquiries when you’re a brand new parent, but as time went on, I felt empowered and excited to explain his special difference. I was so proud of our little boy and every inch of his perfect body, that I felt it incumbent to share information about this very special group of humans that we were now a part of.
As Milo got older, I became increasingly aware that he would hear my explanations and felt it important that he would hear love, patience, and education as opposed to anger and embarrassment. So I would tell people that nothing happened, that Milo was born exactly as he was intended to be, and that he was just a little bit different. That he’s not in any pain and that is the only foot and body he’s ever known, so it feels perfect to him! And then I would go on to explain that he would soon get a prosthetic that would help him walk just as other babies and children do.
Milo has been wearing a prosthetic daily since he was seven months old. He learned to walk both with and without his prostheses at 13 months. He can even walk, run, climb, and jump without the aid of his prosthetic! We have gone through many different types of prostheses, but he now uses a silicone foot that looks and even feels very typical and allows him such incredible mobility. Milo’s prosthetist, Chris Kort at Prosthetics in Motion, and their artists at Silicone Skins, did such an amazing job it’s almost impossible to tell that he’s limb different when he’s whizzing around doing gymnastics at LIC Kids, playing soccer in Astoria Park, or rock climbing and doing obstacle courses at Camp No Limits, a camp and organization specifically for limb different children and their families.
With April being Limb Difference Awareness Month, I encourage you to talk to your children about physical differences. Let them know there’s nothing to be scared of just because another child’s body appears atypical to what your children are used to seeing. I've listed some books and resources below that may assist in conversations with your own children about children and their differences. I also encourage you and your children to have a conversation with Milo if you’re so inclined! He’s a very articulate little four your old and loves to tell people that he was born limb different and that being different is awesome. And you know what? Being limb different IS awesome!
Great book options:
Different Is Awesome by Ryan Haack
I Have A Doll Just Like You by Julie Ann Zitterkopf Larson, MD, MPH
Let's Talk About It: Extraordinary Friends by Fred Rogers