Lindsay Wright's son.

Why I Smiled When I Found Out About My Son's Limb Difference

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“I think I’ve seen something wrong with the baby…”

They were terrible words to hear, but that was where our upper limb difference journey began.

The 12-week scan had been going smoothly, but we were sent off to go for a walk to “try to make baby move around.” We didn’t suspect anything at the time, as our first child (an amazing daughter) was often in the wrong position during her scans. We went for a little wander, but when we came back into the room there was an additional person there. Unusual. The sonographer ran another scan, taking a good look around, then turned to the new person to ask if she agreed. She did.

It was then we were told they had spotted something “wrong” with the baby. I cannot tell you the amount of dread and worry that rushed through my head in that moment. All I remember from those few seconds of panic was taking a deep breath and holding my husband’s hand tightly. You see, before our daughter we’d had a miscarriage. We knew the pain of losing an unborn child, and I felt I had to brace myself for whatever sadness we were about to experience.

When she told us she didn’t think she could see a left hand, we both smiled. What a relief.

The medical staff seemed confused with our happy reaction. They didn’t know that when I was growing up, my mum was a childminder, and one of the children she looked after had a limb difference. She never let it stop her from doing anything; she just found her own way. That girl is now all grown up, and she and others like her give us peace about our son’s future. To us there was and continues to be nothing “wrong” with him. His limitation happens to be physical, but we all have limitations of some sort — we just don’t always see them.

What happened immediately following this scan isn’t worth documenting as it doesn’t shine a nice light on the National Health Service, which does have its faults, but I think we are blessed to have it. In summary, we were told we had to have some more scans to find out 1) whether the baby definitely didn’t have a left hand and 2) whether it was because of something serious.

Four weeks later we were seen by a lovely specialist sonographer, who was able to confirm that the baby did not have a left hand. From the scans it looked like it stopped at the wrist, although since he was born we can see he has a bit more. She was also able to confirm that the baby looked healthy, which was very reassuring. She wasn’t able to tell us why the hand didn’t grow; there wasn’t evidence of amniotic banding, or anything else obvious. Perhaps it just wasn’t in his DNA. Maybe later on in our journey together, we will discover the reason.

From that scan onwards, we were treated like any other healthy pregnancy, and it was a wonderful few months. But it seemed as if there wasn’t much support, especially in the U.K., for families with a limb difference. A lot of “support” places assumed you were in a negative place about the news, and we weren’t. We were never devastated or saddened by the news of his missing left hand. We have always known he will still be able to achieve whatever he would like to achieve; it will not stop him from living a full and happy life. Eventually I found some great blogs from the USA which came from the same mindset as us, and they brought so much joy into our lives. We’ve since discovered some great UK support such as REACH and Disability is Ability.

Lindsay Wright's son.
Lindsay Wright’s son at 6 months old.

In October 2015, our beautiful baby boy was born. We were amazed to find out he had a wrist and a bit of a hand beyond that, which moved slightly. Later in the day he had to go for a few tests to check him over and make sure he was healthy — and then we were allowed to go home and introduce him to everyone!

One of my biggest concerns was how the world was going to react. I’m not the most confident person, and I just didn’t know (and still don’t know) whether I’m strong enough to handle the ignorant and rude comments, which unfortunately are likely to happen. Some days I look at my son, who is such a happy, smiley baby, and my joy turns into sadness when I think about the fact that there isn’t anything wrong with him, but there are people in the world who will try to make him think there is.

I started writing my blog, My Right Hand Man, to hopefully help other people who have just found out their child has an upper limb difference. Our experience seems to be unlike others, because we never had that feeling of sadness over the news. A massive part of that is because we had previous experience and education in the amazing abilities of people with disabilities. It has made me passionate about educating others, to help future parents of children with upper limb differences know that their child is going to be absolutely fine in life.

My right hand man hasn’t even been alive a year and already he is amazing us with what he can achieve. At the moment there is nothing he can’t do — he’s incredibly determined! We had been told he might not crawl… but at 7 months old off he was, crawling away. Proving them all wrong. It is such a joy to sit and watch him interact with the world, explore objects, and figure out how to use them. He does some things differently than other children, and some things are exactly the same. Either way, he finds a way.

I do have days filled with worries, but they are never about what he can achieve, only about how others will treat him. I can’t protect him from everything, only provide him with tools to deal with those tough moments. Witnessing his ability isn’t the biggest thing I’ve taken away from the past few months, it is that he is so much more than “the boy without a hand.” It’s a tiny portion of who he is. Once you stop focusing on what’s not there and instead focus on the entirety of your child, you realize they are amazing! And believe me, when they have discovered how to make the loudest noise possible by banging objects together that should never be banged together, you will not be giving their lack of a hand a second thought!

I used to spend so much time trying to picture how my right hand man might achieve certain tasks, but it didn’t take long for me to realize that was pointless. Whatever the task is, he will be able to do it, so why worry how it looks? Enjoy the journey, enjoy the adventure, and enjoy your born-just-right, different-is-awesome, disability-is-ability, lucky-finned child!

Follow this journey on My Right Hand Man.

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8 Things I Want Parents of Children With Limb Differences to Know

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While my experiences are directly related to having been born with limb differences, I would pass much of the same suggestions to parents of children with special needs.

1. Do not treat us any differently than you would your other children.

Instead, do have patience with us as they learn to do things their way, even if they do things differently or more slowly. 

Children are resilient, and we don’t miss the things that we never had. Instead, we learn to make do with what we’ve got and figure out how to do things our own way. Too much coddling teaches us to depend on you to do things for us rather than finding creative ways to do things on our own.

2. Do not feel sorry for us or blame yourself for our differences as most of the time it’s nothing you had any control over.

Instead, do teach us to love ourselves and that we’re strong enough to do anything we put our mind to. 

I know for the longest time my mom blamed herself for my having been born with amniotic band syndrome (ABS), although there was nothing in the world she could have done to change the outcome. I know sometimes she felt bad for the challenges I faced doing everyday things, but having to work through them is what has made me strong. 

She pushed me to be the best that I could be, encouraged me to be involved in sports if I wanted, gave me chores around the house just as my siblings had and taught me that with hard work I could do anything.

Brittany Moore during her childhood

3. Do not let us feel sorry for ourselves.

Instead, do give us comfort and reassurance when we need it and encourage us to keep trying. 

There are days when I still fall victim to feeling sorry for myself, even as an adult. Growing up, my mom would give me hugs and kisses, listen to whatever was troubling me and then help me think of ways I could manage whatever it was that was giving me a hard time.

I have since found ways to be able to play the guitar in spite of my fingers, conquered driving a manual clutch vehicle with a prosthesis on my right foot and so many other day-to-day tasks that were tough for me. It taught me to be creative and think outside the box in life rather than give up at the first sign of struggle.

4. Do not hide us away or refrain from public outings just because someone might ask questions or look at me strange.

Instead, do socialize us and let us get to know new people. 

Just as different people have different colors of skin, hair and eye color, people also have different arms and legs, hands and feet. Teach us that although we might look different, that’s what makes us who we are. Don’t be ashamed for our differences or try to hide them in public, since we’ll learn to be ashamed of ourselves and continue to try and hide who we are when we are older.

Take us on play dates to the park or the pool and let us interact with others. We might get a few odd glances or questions, but we’ll be open to others who might approach and we’ll learn to be open as well. Remember, we learn how to react to others by the way we’ve seen you react.

5. Do not hide away our differences with clothing or by covering them.

Instead, do teach us that it’s OK to be who we are without shame or the need to prove ourselves. 

I worked with an older woman several years ago who hadn’t been diagnosed with ABS, but her left hand didn’t develop much past the wrist, and she had tiny little balls of flesh where her fingers would have been. She always wore a sock over her hand, kept her hand in her pocket or would hide it behind her quite often whenever someone else came around to talk to her.

We talked one evening about our differences, and I could tell she’d never really accepted herself due to her hand and had poor self-esteem because of it. It showed as well in her attitude. There was a certain amount of entitlement that she had, and she would say and do what she could to try and prove herself worthy of respect.

In a residential social work facility, this came out as stressing her “superiority” as a staff person unnecessarily. We tend to develop this kind of attitude when we feel ashamed or feel as though we’re lacking as an individual and need to try and make up for it. Remember, if you show shame in our differences, we’ll learn to be ashamed ourselves.

6. Do not be overprotective and always do our bidding for us.

Instead, do teach us to be able to express and explain ourselves. 

This one can be very tough, but it’s definitely important. As a parent, you want to jump to your kid’s aid when people stare or kids say mean things. But it’s important that your kid doesn’t shatter into pieces when this kind of thing happens.

Teach us to speak up for ourselves and to have a voice. Explain to us what happened to make us different, so we can explain it to others. Up until about fifth grade, I was teased and bullied daily and called names like “Pirate” or “Peg-leg Joe” in school. I’d come home crying regularly and didn’t wan to go back.

But when I found my voice to speak up, all that changed. I talked to my teachers and expressed my desire to have a little assembly where I could “show and tell.” I took in anything that had to do with my prosthesis and showed and explained everything. I even took my prosthesis and socks off and showed everyone how it worked.

From then on the bullying and teasing stopped, and if anyone said anything, those who had teased me the worst stood up for me as well. Bullying tends to stem from ignorance, and you can help your child combat it by teaching them to have a voice for themselves. Again, you won’t always be there in every situation so equip them as best as you can so we can fend for ourselves.

7. Do not feel like you owe an explanation to anyone.

Instead, do keep any explanations simple and polite. 

Although I mentioned talked above about teaching and explaining our situation when questions come up, don’t feel like you owe an explanation to everyone who asks. You don’t owe anyone an explanation of anything, nor do we.

Just as people are born with different colors of hair or eyes, people are born with differences in limbs. Just as your neighbor doesn’t owe you an explanation of why she died her hair bright purple, you don’t owe her an explanation as to why your son or daughter is missing digits on her hand or walking with a prosthesis. It’s really not her business.

Offering explanations, however, can lead to new relationships, friends and support. It can often also add a bit of information in the back of someone’s mind when they face a similar situation. It offers the opportunity to share a unique experience with someone who would never have known that such things even medically happen.

I always welcome the opportunity to tell others about my situation, but you and I don’t owe anyone an explanation just as we aren’t owed one when something new is presented to us.

8. Do not always take things so seriously.

Instead, do learn to make the best of whatever situation you’re given and we’ll learn to do the same. 

We’re only given one life to live, so learn to make the best of the hand you’re dealt and we’ll do the same. It can definitely be exhausting making 35 trips to 16 different doctor’s offices four times a week, so learn to relax and enjoy the small blessings as they happen.

Don’t always take things seriously and learn to have fun. I love to camp, and we went out one weekend and every camping spot was filled. People were everywhere.

Barefoot and in shorts, I walked from our tent over to the restrooms. There must have been 20 tents in between with people sitting around fires at each of them. Many of them had kids running around, so you can imagine the looks I got as I walked by. I could see the whispers and nods of the head in my direction and feel the burn of eyes watching me as I went.

On the way back, I decided I would give them something to really talk about. In the bathrooms, I turned my prosthetic leg around backwards and walked back to my tent with it that way (because I found it amusing one day and learned I could make it work). I’m sure you can imagine how the whispering and stares increased with that move. But I laughed about it. There’s too many hard times in life to take things too seriously. Learn to joke and have fun. By the way, there are many other creative ways I’ve found to really get people going — and you can’t do that with normal legs.

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Why I'm Saying 'Good Riddance' to My Prosthetic Arm

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I was born in 1986, which (I’m told) was a pretty wild time. Cocaine was all the rage, there was a little incident at this place called Chernobyl, Mark Harmon was the sexiest man alive, and “Top Gun” was released. And when a baby was born without her hand, the doctors thought it would be a great idea to amputate the toes off of one of her feet and install them as fingers on her stump. Like I said, drugs were cool back then.

Born stump bumping.
Born stump bumping.

While still fairly surprised that their first child made her grand entrance sans a major body part, my parents had the fortunate wherewithal to politely say “F*** no!” They bundled me up and took me home with all ten toes in their factory original positions.

Yet, there still remained a “problem” that needed to be solved. Humans should have two hands. How could you possibly survive in the world without one? Thus, just past the age of 1, I was given my first prosthetic. A hook. Now, hooks are great for two reasons: they’re cheap, and they’re durable. However, if you outfit a toddler with a giant metal pokey thing, don’t be surprised if they beat the ever living s*** out of all your nice furniture and floors.

Hooks also have limited range of use, only look cool on Halloween, and depend on a harness system that wraps around your shoulders and is decidedly not cool. At around 5 or 6, I received my first myoelectric prosthetic – a robot hand. It was heavy. I had to plug it in each night to charge. Like the hook, all it could do was open and close and it only sort of looked like a “real” hand.

My mom and I, wearing an early myoelectric arm which doubled as Thor's Hammer.
My mom and I, wearing an early myoelectric arm which doubled as Thor’s Hammer.

It was around this time that I started to become attached to my prosthetic, my “helping hand.” Even though it was functionally no more than a dead weight with a battery, I needed it. I couldn’t leave the house without it. The attachment grew worse when in middle school I switched to a passive cosmesis, which is essentially just a mannequin hand designed to look as real as possible, down to the skin tone and nails. It’s also worth noting that I was (am?) a somewhat scatter-brained individual and never put things where they belong. I would regularly “lose” my arm somewhere in the house. For something I needed every day, I was pretty crap at keeping track of it.

Let me clarify “needing” it – I don’t need my prosthesis at all. In fact, I’m more abled without it. The emphasis isn’t the prosthesis, but the “cosmesis” – it’s cosmetic. When I wear it, I get fewer stares, fewer sideways glances, fewer “How did you break your… oh.”

Fake arms are sweaty. Sockets get stinky. Hot spots develop. They break. They’re expensive. I can do more without it. So why do I still wear one? Why, as a teenager, would I fake sick and not go to school if I couldn’t find my  arm to wear? Why would I change plans around having or not having my prosthetic?

Au naturale and perfectly fine with it.
Au naturale and perfectly fine with it.

I wish I had a definitive answer, but the closest I can get is that the pain, sweat, and discomfort was worth it to avoid the stares and awkward conversation. This shouldn’t be confused with not being proud of who you are – if someone walks up to me in the grocery store and says “Hey! You’re missing your hand!” I’ll answer “Yeah! Let me tell you all about it!”

Sometimes though, you just want to be a “normal” human being and not have to deal with people when you go to get a gallon of milk. Without my arm, I stand out all the time. I always have to have a reply ready to inevitable questions. If I’m cranky I’ll even have my “Oh no, I didn’t notice!” deadpan ready to go. With my arm, even when it’s green and grimy and has broken fingers, people’s brains will glance me over and think ‘Two eyes, two ears, two hands…check, move on.”

I received my last prosthesis when I was 22 and aged out of the Shriner’s Hospital for Children’s program.  I loaded up with a few of them, but as the years went by they broke, wore out, my muscles changed and the sockets don’t fit that great anymore. I don’t need my arms, plus I’m broke/cheap, and replacing my arms seemed less and less of a priority as time went on. Slowly, I stopped wearing my arm to the grocery store. Then I stopped wearing it going out to dinner. In the last two years, I stopped wearing it entirely except for when I’m at work – and I can sense even that is coming to an end.

A few months ago I went to dinner right from work and was still wearing my arm. My friend Dan looked me up and down oddly, finally saying “Dude, you have two hands right now. That’s freaking weird.”

After 28 years, I’m losing my arm. It’s been more of a crutch than an asset, more of a hindrance than a helper. My obituary for my arm will be short: “The good times were few, mainly limited to the look on teacher’s faces when it would come flying off during games of Red Rover.”  I don’t want to be defined by a hunk of plastic. I don’t want this forgery of a hand to be a part of me, because it echos a sentiment that I am somehow lesser without two hands.

Good riddance.

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How Horses Gave Me Self-Confidence as a Person With a Limb Difference

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I was born without the lower part of my right arm. Although I’m 21 now and seem like a strong individual, I grew up with a lot of struggles. But let me tell you how riding horses helped my self-confidence.

Ashley Sherman riding a horse

I’m from Orlando, Florida, and grew up on a farm with at least 12 horses at all times. My mom, Susan Sherman, has been training horses for about 40 years, and my twin sister and I were born into the industry.

When I was born, my parents wondered how I would get through life being different and not having another arm (as most parents would do). The first time I tried to crawl, my mom cried and cried and wanted nothing more than to help me figure it out, but she let me do it on my own. I needed to figure that out.

I grew up always hiding my arm in my sleeve or behind my back because I was afraid of being judged and being different from all the other kids at school. But there was always one individual I could always count on to love me despite my difference — my horse.

I had a few horses growing up, but I got my first real horse at 6. And he has a disability just like me. Pepper only has one front tooth and a breathing problem that sometimes makes it hard for him to work. But he tries so hard to make me happy. Anytime I had a bad day at school where kids made fun of me, I knew I could come home and have a better day with him.

With my mother’s guidance and support, I started competing in the western events where you only need one hand to hold the reins. Although we did really well there, I felt like I wanted to do so much more. Many people, including trainers, told me it would be too hard for me to try English style because I had to hold both reins.

But then my neighbor came up with a device that changed the rest of my riding career. I owe a lot to him for coming up with such an incredible tool. He created a leather strap that attached to the right rein. It looked like the end of a dog leash, and it gave me control on the right side. I later used Velcro to help keep it on better, but after starting to use the tool, the rest was history.

Since then I have moved up to a bigger horse named Lujen and have gone on to compete at a state and regional level competitions in English events. We have done everything to jumping, dressage, reining, western and English pleasure and much more. Nothing has ever stopped us, and I have my horses to thank. They taught me everything: respect, responsibility, patience, hard work, good sportsmanship and, most importantly, unconditional love.

I think having a bond with a horse is wonderful for anyone with any sort of disability. Horses bring out the best in everyone and creating a bond with such a magnificent animal is something I’d never trade for the world. The advice I’d give to any parent would be to get your child involved with horses.

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The First Time I Felt Like a Badass as a Person With a Disability

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“Hi, my name is Kelsey Lindell and I was born with a radial clubbed hand.  This means I’m missing my radius bone, making my arm shorter and bend in, and I’m missing two fingers.”

No, this wasn’t some bizarre version of two truths and a lie about my summer vacation. This was how my parents would have me introduce myself in front of my class on the first day of school, our best attempt to combat bullying and talk openly about my disability. Kids tease about everything, but the easiest targets are things they just don’t understand. This made me and gingers low-hanging fruit.

Confidence has never really been an issue for me. When you pop out of the womb missing fingers and half of your arm, you have two choices in life: take pity on yourself and live a life of insecurity, or own it and change mindsets. I chose the latter. At the youngest ages I remember being picked on and called names like a “three-fingers” and a “T-Rex” because of my special little arm, and even at that age I knew they were the messed-up ones.  I’d give them a stank face and whatever the 7-year-old equivalent was of double birds (which with the influence of my grandmother, was probably actually flicking double birds) and get on with my life.

It’s hard to believe that I didn’t combat it back more than I did considering what a little spitfire I am, but on the rare occasion I did I’d hit em with the classic, no comeback possible line of: “At least I can’t help my disability, what’s your excuse for being a d***?”

Of course comments like this stuck a bit. One of the counselors I went to explained it as the enamel on a non-stick pan: the first couple of times it slides off relatively easy, but over time comments wear and eventually things start to stick.

I was still confident, though, despite being terrorized. I was plopped on a stage in a tiny white and blue tutu and tap shoes at age 3 and worked it hard for all 2:57 of “ABC” by the Jackson 5. I, and everyone in the audience, realized then and there that I loved being the center of attention. My mom used to tell me I could sing before I could talk, and dance before I could walk. I used to think this was a beautiful and poetic and my mom had this angelic view of me as a tot, until I heard Amanda Seyfried butcher “Thank You For The Music” in the 2008 film version of “Mamma Mia” and realized she’d stolen the line from ABBA.

My parents literally never let me use my arm as an excuse for anything, and if I tried to say I couldn’t do something they’d go the extra mile to make sure I figured it out. As I grew older I received feedback from people who were surprised I could do basic, menial tasks. Eventually, hearing how impressive it was that I could dance, drive, cook, fill in the blank with task that you usually do with ten fingers despite missing two fingers and half of my arm became my normal.  Not the worst mindset, and definitely better than being self-conscious about my funky chicken wing arm.

My friends and I made up a name for my arm: Larry. To this day he has a Facebook fan club and is my favorite Halloween costume accessory. One year I was Captain Hook by simply dressing up as a pirate, wrapping my left hook in tin foil and calling it a day. I learned early on that if you can laugh at things, you take away any ground from people who would usually laugh at you. I just don’t take it that seriously.

In June 2011, I took my first yoga sculpt class in hopes of whipping my once upon a time ballerina bod back into shape after an Achilles tendon injury. You know that moment in the “Wolverine” movie, where he morphs into superhero mode and whips out his shiny little knife fingers out and is a complete badass? That’s what this moment was like for me.

Let’s be honest, my yoga practice looks very different than everyone else’s.  Teachers would come over to me in the middle of class and show me a modifications I could take to get a similar pose or motion,  honoring my capabilities and being mindful of the natural limitations I had.  They never tried to make things easier for me than the rest of the class, just different — and oftentimes harder.  Like I double dog dare you to do an entire class from your forearms, requiring you to use triple the core and leg strength because you can’t use your hands.

This was such a pivotal moment for me because if I tried to be like everyone else and do the class the same as everyone in the room, I would have been severely injured.  My pushups and planks would have been out of proper alignment and form, my tendon that was surgically moved on my right hand would have been crushed, and I would have been out of commission.  The teachers I worked with didn’t see me as disabled, but so able, and were creative in how we could work together to create a flow and practice that worked for me, challenged me and helped me become stronger.

I didn’t realize it at the time, but if I hadn’t fallen in love with this practice I wouldn’t have fallen in love with my little lucky fin.  Later that year, I moved to Africa and realized that mass murder is happening to children just like me. They have lucky fins, special chicken wing arms, beloved left hooks or another small way they were born funky, and they’re not just called a T-Rex or three fingers. In most cultures they’re seen as demon-possessed. They’re viewed as cursed or demonic. They’re physically restrained or hidden in the back of homes, or under floor-boards. Gross. I legitimately cry every time I have to write these things out.

What I once viewed as something I dealt with, I have now come to a place of loving. This poured gasoline on the ways my heart was ablaze with love for these children who were just like me physically, but unlike me, their lives are not celebrated.  All I wanted to do was to love these children, to kiss their little cheeks and tuck them into bed and give them a home, family and unconditional love. The amount of children this is happening to is overwhelming; not even Mother Teresa herself could care for millions of children all around the world.

I created Uphold Global so the incredible people I know in the USA who love and celebrate me and Larry could then go on to financially support other incredible, established organizations with people on the ground to save these children I was enamored with.

Becoming a part of the yoga world has saved my life in so many ways, but it didn’t just save my life and change my body image.  It’s helped save the lives of hundreds of millions of children all around the world.  Not just by changing my opinion of my own body, but by keeping me physically, mentally and emotionally healthy enough to run an international organization. At the end of the day I don’t really care that much about having the “perfect body,” because I don’t believe it exists.  I’m passionate about health and wellness because there are millions of tiny people who depend on me to be healthy and vigilant enough to fight for them.

Read more at Uphold Global and Kelsey Lindell.

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When a Stranger Said My Daughter Had 'Forrest Gump Legs'

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When my daughter was born with bilateral club feet, the hardest part for me was the look of shock and instant vilification on stranger’s faces when they noticed her legs. The comments and whispers ran a close second, though.

What a cute baby! She looks just like… *gasp*”

“Oh my God! What happened to her legs?”

Looks like someone had a bad fall!”

“She’s got Forrest Gump legs!”

Sometimes I could laugh and joke about it:

Yeah, you apparently have to watch them all the time. They’re quick!”

“She decided to try the expert level ski slope.”

Other times, I couldn’t. Every time we went out in public was a crapshoot. Some days were OK, and we didn’t get too many awkward stares, comments, or questions. Some days were full of them. The one certainty was that at soon as I started the car, I tried to brace (no pun intended) myself to keep it together.

Club feet (a.k.a. talipes equinovarus) is a fairly common birth defect, as far as the odds game goes. Currently it is believed that 1 in every 1,000 babies are born with it, which are the same odds for Down syndrome for a woman 30 years old. It is twice as common in males than females, and the exact cause remains a mystery.

My husband and I found out our little one was one of those “1 in 1,000” during our 18-week anatomy scan. Everything was going perfectly. I had researched extensively (as most first time moms do) about what to expect during the scan. I had a mental checklist of things to look for, signs of illnesses and birth defects, how to tell the difference in gender, everything. As the technician went over our little baby, I was so excited that it seemed like everything was one exciting blur. I stared at the screen in amazement, barely hearing the technician. My brain was so focused on finding out gender that although I heard her, it was a blur.

“Plenty of fluid, baby’s head measures great, nuchal fold looks good, nasal bone, here’s her heart!, kidneys working great, it’s a girl! You didn’t do anything wrong, but there’s something here…”

…and that’s when I snapped to full attention. The technician pointed to the screen, and there it was. My baby’s leg, with the foot curled up, almost like she had stepped on her ankle and it was contorted up. The other leg was exactly the same.

The next 22 weeks were full of confusion, anxiety, shame, fear, guilt, and a multitude of other emotions. There were the typical new-mom-to-be jitters of excitement and anticipation, but they were overshadowed by an enormous cloud of just sheer helplessness and the unknown. I had never known anyone with club feet. It didn’t run in either side of mine or my husband’s family, and I had no warning that it was a possibility.

The scariest part for me was wondering if there was something underlying the club feet. I decided against any kind of genetic testing, and I was constantly put into fear with every following sonogram, because all the technicians would say that because I refused testing, they couldn’t know if there was anything going on aside from her feet. Nobody bothered to reassure me that it was probably just her feet, and not to worry. I left each appointment feeling like a failure and a terrible mother, even before my baby had taken her first breath.

Little girl with bilateral clubfeet surrounded by her old braces and casts.
Tiffany’s daughter with her braces and casts.

When she was 3 days old we started the corrective process, using the Ponsetti method. It’s a long and often difficult road, physically and emotionally. The first phase is the actual correction of the club feet, which involved manipulating her feet towards the correct position, and then applying a plaster cast to hold the correction. She got a new cast every week, with each one moving her foot more and more, little by little.

After the 5th cast, she had a procedure called an Achilles Tenotomy. The Achilles’ tendon is shortened in children with club feet, so in order to bring it back to the length needed for full range of motion, they cut the Achilles’ tendon. Then the foot can be stretched and the tendon grows back longer. Our orthopedic doctor did the procedure in the office; some do them at hospitals. It was absolutely horrible. Our doctor is awesome, and I don’t mean that as a slight against him, but as a mother, it was the most heartbreaking moment for me. He had to do the procedure without anesthesia, because it makes it more difficult to cut properly. They numb the area immediately afterwards, but those few seconds were unbelievably long for me. I felt sick. I actually almost threw up on my baby, but thankfully I held it together. Once she was numbed, she got her last set of casts on.

That took about 8 weeks. Then we entered the bracing stage, which is what we’ve been doing for the last 2.5 years, and will continue to have to do for probably another 2-3 years. Bracing is done with special boots that either lace or buckle up, which are then connected on the bottom of the boots by a metal bar. It keeps the feet in a locked position in order to prevent a relapse of the club feet. Initially we had to keep her in the boots and bar for 23 hours a day. She was slowly weaned down, so now we only have to have her wear them at night.

I cannot tell you how happy I am that we no longer have to have any casts or bracing when we go out. It wasn’t because I was ashamed of her or embarrassed. It was because of grown adults — adults that formed their own opinion without even bothering to ask. Adults that immediately though of me as a neglectful (or worse, abusive) mother and had no reservations about telling me so.

The way we were treated by other people broke my heart and infuriated me. The comments and jokes were nothing short of cruel, and I am grateful my daughter was too little to understand what was said. I’m glad she won’t remember the looks that people gave us. Thankfully, we did have some wonderful people talk to us and either ask politely what happened, or share their own story about someone with club feet. I can’t put into words how those people gave me the strength, encouragement, and reassurance that I was an awesome mom. I actually had one lady quietly say “You’re an awesome mom, and you’re doing great” to me in passing, as I was struggling to unhook my daughter’s brace so I could pull her out of the shopping cart. I will never forget that, and how right before her comment, I was on the verge of crying with frustration and exhaustion.

Now, my daughter looks like any other child. Unless I told you, you’d never know she has something going on with her feet. But I still hope for more understanding from people and less judging. More positive comments instead of snide, hurtful ones. More smiles than stares.

So if you’re out and about and happen to see a baby with casts or braces on their legs, there’s a good chance they have club feet. There’s a very good chance that the parent with them would appreciate being told they’re doing a fantastic job, or even just seeing a friendly smile. They don’t need jokes, they don’t need assumptions.

As the old saying goes, you can’t understand what someone else is going through until you walk a mile in their shoes.

 

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