Meet Sammy, a mom of two young kids, one about to turn six and the other just three. Among the everyday chaos of raising a family, Sammy faces a unique challenge – her youngest has a limb difference. Despite this, he exudes the same joy and curiosity as any other child his age, oblivious to the ways in which he stands out.
Sammy's journey hasn't been smooth sailing. Alongside her husband, she's tackled various hurdles. However, her steadfast beliefs remain a source of strength, guiding her through the uncertainties that come with raising a child with unique needs.
As her son grows, Sammy grapples with common parental worries, magnified by his circumstances. How will he fare in social situations, particularly those involving activities like bouncing castles and trampolines? It's a question that weighs heavily on her mind, prompting her to strike a delicate balance between protecting him and allowing him to explore the world freely.
To find answers, Sammy immerses herself in self-education, actively seeking information and support from various parenting communities. For her, knowledge isn't just empowering – it's a source of peace amidst uncertainty.
Yet, Sammy faces another dilemma – how much to share with others. She wants to raise awareness and promote inclusivity while respecting her son's privacy. It's a fine line she navigates with careful consideration, always mindful of maintaining his dignity and autonomy.
In Sammy's story, we see the challenges and triumphs of parenthood, underscored by faith, education, and a deep sense of love. She reminds us of the beauty found in embracing differences and celebrating diversity, offering a glimpse into a world where every child is valued for who they are.
As Sammy continues her journey, we admire her resilience, her compassion, and her unwavering dedication to her family. In her story, we find inspiration – a reminder that love knows no bounds, and that every challenge is an opportunity for growth and understanding.
Here are her answers to a few questions she was asked recently:
"1- Can you share a bit about your journey as a parent to a child with a limb difference?
I guess it’s best to start from the beginning. When I was pregnant at 20 weeks, you have an ultrasound where the measurements are taken, and pictures are taken of your baby to make sure he’s healthy. At that appointment everything was great. They asked me to come back in four weeks just to get some additional measurements and pictures because the baby was not very cooperative, that’s when I knew I had a fighter on my hands! Haha. My husband and I went back four weeks later, the measurements were being taken, nothing seemed out of the ordinary. Then when everything was completed, I remember she turned to me, and I could just read her face of concern. She said “ I just wanna give you a heads up before the doctor comes in to talk to you. I was unable to locate your son's left leg, I was speechless. She left to go get the doctor, my husband looked at me and asked if I was OK, and I said no she just told me my son is missing a leg. From that moment, on everything was just a blur. I had so many thoughts running through my head, so many emotions, I just shut down. The doctor showed us the ultrasound picture of my son’s thigh bone (femur), and literally his foot attached to the bottom, So from his knee to his ankle, that bone was not developed. Once I got home and processed all my thoughts, I just remember my husband and I grieving. So that’s when I turned to Google MD. Haha. I learned my bones real quick, the bones from the knee to the ankle, there are two, a fibula, and a tibia (which is the shin). I did way too much research, and that’s when I diagnosed my son with Tibial Hemimelia.
“Tibial hemimelia (also known as tibial deficiency) is a condition in which a child is born with a tibia (shinbone) that is shorter than normal or missing altogether. The condition is extremely rare, occurring in only about 1 out of every 1 million births. There are about four new cases in the United States each year.”
Yes, I did hit the lottery, my son Owen, is one in 1 million, he is the most amazing boy, and teaches me every day, that different is just that, different.
Fast-forward to when he’s born, we found a hospital located in Baltimore, Maryland that specialized in advance orthopedics. After many appointments, MRIs and x-rays, it was determined that amputation would be the best decision for him to have the best mobility. When he was 16 months old, he went through amputation surgery, which was through the knee, meaning he has his full femur (thighbone).
At 18 months old, he was fitted and received his first prosthetic leg.
Today, he is on his third prosthetic leg, obviously being a young child he grows, and changes so much. He will most likely have to get a new prosthetic every year until the age of five, when growth will slow down a little.
2- What have been some of the most rewarding moments along the way?
Watching him grow and being so resilient. Showing me every day, that he is fully capable of doing anything any little boy, his age can do, it just may look a little different.
Meeting amputees - of all ages, hearing their stories, connecting with families across the world, connecting with other moms who struggle with the same emotions and fear and anxiety that I go through. Oh the power of social media groups!
Being his mom, he has taught me so many things! I am just grateful that he is here, and healthy. He has a voice, he has strength, he has motivation, he has determination, I know he will advocate for all disabilities! He’s full of energy, with an attitude. I know he’s gonna have a voice, and his voice will be heard.
3- How has your perspective on limb differences evolved over time? What insights or lessons have you gained through your experience?
I made a lot of mistakes already, I’m learning as I go, but the most important thing is, I’m learning! The one lesson I learned, there is no rule book, everyone who has a limb difference, has their own story, and deals with their own story differently. Anytime I see someone with a little difference. I just wanna give them a hug and tell them that it’s just wonderful to see them. Haha, but I know that’s too much!! but for me, I know what it’s like living with someone who has a difference, and just some of the extra “stuff” needed, just to get out the door, it’s a lot! it as inspiring, but they know nothing about me so they’ll just think I’m some person feeling sorry for them, that’s the last thing that anybody wants, it sympathy. So the best advice I have, from my experience, treat them the exact same way you treat someone without a limb difference.
4- What are some misconceptions or stereotypes about limb differences that you would like to dispel?
It’s not always a shark attack, or a military veteran.
Haha.
Again, my journey is just beginning, so I have so much to learn. However, I always catch myself thinking, “he won’t be able to do that. With his limb difference and his prosthetic, I don’t think he’ll be able to do that.” Then, that’s when he shows me, he can do anything, it just may be a little different.
Someone with a hand or arm limb difference, they do archery, I’ve seen it. Someone with a leg difference, I have seen a man who was missing arms and legs that swam faster than someone with all four limbs. 5- In what ways do you advocate for greater awareness and acceptance of limb differences?
I share my story. Interact with other parents in social media groups, listen/give advice. Share my knowledge, participating in exactly what we’re doing now, writing an article.
6- How do you celebrate and embrace your child’s uniqueness and individuality?
At this point, since he’s only 3, we focus on not treating him differently. We do explain that he is unique and a little different, but right now having a prosthetic leg is all he knows.
7- What advice would you offer to other parents who may be navigating similar experiences with their children?
I remember the doctor telling me before we had Owen, he said. “ you’re giving birth to your son, not his leg. Look at the bigger picture, focus on him and not his limb difference.” That kind of stuck with me, I was so overwhelmed and focused on his limb difference, which was keeping me from enjoying my pregnancy and the birth of my son. Sometimes we get too deep into our thoughts and lose “living in the moment.” Watching him grow, in the moment, is a blessing, he’s healthy, he’s happy and loving life!
8- Can you share a message of positivity for other families who may be facing similar experiences?
Even though there’s a lot of challenges, you have to look at the small wins. Jumping the lines and amusement parks, getting closer parking spaces, or better seating at events. Hahaha. On the serious note, we live in a society today, there are so many support groups or foundations out there, do some research, join and connect with others. You do not need to do this journey alone.
9- How can we, as a society, better support and promote inclusivity for those with limb differences?
Our biggest challenges, have been getting supplies for prosthetics at pediatric sizes. Luckily, our prosthetist has been great at making them work. Another challenge, is finding clothing that work with a prosthetic, that are affordable. It’s hard to taking his prosthetic on and off when it doesn’t fit well in the pant leg. We found joggers have worked well because of the elastic bottoms. We have also found some pans with zippers they help as well. However, children grow so quickly, and sometimes spending $40 on a pair of pants for a three year-old just doesn’t seem worth it.
I believe we live in the best society now for people who have disabilities. There is more awareness, more technology, and more accessibility then there’s ever been! I have actually been working with a small business engineer to share my struggles and hoping she can create better products and put them on the market to help those with the difference."
Thanks Sammy for being so open to talking with me!