‘I honestly thought my eyes were playing tricks on me.’: Mom of daughter with limb difference shares acceptance journey, support community

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“My first daughter, Blakely, was born March of 2019, and turned 1-year-old the month the pandemic began. Her birthday party was canceled, life came to a sudden and complete stop – like it did for most – as work and plans ended. We spent those next few months navigating new teach-from-home life, and then spent the summer trying to make the most of these unexpected circumstances. My husband and I are both teachers and there was so much uncertainty about what the next school year would look like for all of us. 

To add to this uncertainty, on August 10th at 3 weeks and 1 day, I got the very faintest positive pregnancy test confirming our efforts for baby #2 were successful. We would soon be welcoming a new little one into our family! Our hope had always been to have our babies two years apart, we just never imagined timing would land right in the middle of a once in a lifetime pandemic. Nonetheless, life must go on and we were overjoyed to have a new baby soon!

The Pregnancy Journey

My pregnancies are not easy on my body. Something happens right when I get pregnant and it becomes extremely difficult for me to walk. Something about the bone formation in my hips and the new hormones causing the ligatures to become too loose. On top of that, I was also diagnosed with gestational diabetes for the second time at just 11-weeks pregnant. This meant 6 upcoming months of diet, finger pricks, blood sugar testing, and eventually at the very end, insulin shots… all while growing a life inside me that brought about its own nausea, heartburn, discomfort, and cravings. We were also navigating what pandemic teaching looked like in 2020, which for my school involved me teaching virtual for the first 9 weeks and then switching to a full class of students for the remainder of the school year. Desks were separated, extra sanitizing and cleaning, students and teachers all wore mandatory masks, individualized supplies and manipulatives, and as much separation and contact tracing as possible.

To say it was a stressful, difficult, and frustrating year would be an understatement. I did not feel like a good teacher. Everything I knew about best teacher practices had been taken away and I felt like a failure. But also, they were getting more out of that pandemic teaching than if we were virtual or home, so we had to take what we could at that stage. I also had to do what I could to protect myself and my baby, which meant taking the mask mandate and all the precautions possible very seriously. One of the hardest parts was eating lonely lunches in my room to not spread germs with coworkers, and a major feeling of isolation.

mom standing pregnant at work the day of her induction
Courtesy of Joan Loyd

Accepting Landyn’s Limb Difference

My second daughter, Landyn, was born April 8th, 2021. I went into the hospital the night of April 7th for an early induction at 37.5 weeks pregnant due to my gestational diabetes. She was born the next morning with 3 quick pushes, handed to me, and amongst the exhaustion and joy of seeing my baby, I was suddenly confused. Her hand looked… different. I was wearing a mask during labor since, at the time, that still seemed like the best way to keep me and my unborn baby safe. I remember thinking maybe my vision was blurred from the mask, so I adjusted and lowered it for a better look.

Three of her fingers weren’t fully grown and I honestly thought my eyes were playing tricks on me. I mean I was exhausted after a full night of being induced, and the doctor and nurses hadn’t said anything when handing her over. I searched for the words to tell them something was… wrong? with her hand. As a first grade teacher, I also know not to use words like ‘wrong’ to describe differences. I was paralyzed in silence, completely unable to find the right vocabulary, but wanting someone to come make sure everything was okay.

My husband also noticed the fear in my eyes as they locked with his, so he called the doctors and nurses over. They quickly grabbed my baby out of my arms and undressed her delivery swaddle to check her other limbs. She was handed back to me, not much else was said, and I held her during my ‘golden hour’ and quietly cried small tears from the corners of my eyes. They soon after whisked her away to NICU because of low blood sugar counts from gestational diabetes, and to my phone I went trying to google search for answers. 

mom lays in bed with newborn on chest, noticing limb difference
Courtesy of Joan Loyd

Through my search, I learned it was most likely either symbrachydactyly or amniotic band syndrome. My pediatrician came later that day and said it was probably ABS, and as I was flooded with congratulations from friends and family, I searched for the words to communicate all that was happening in our lonely hospital room with Landyn still in NICU and covid restricting visitors. 

Over those few days after she was born, I would stare at her hand, wondering how this was suddenly my life, how I suddenly found myself in this narrative. Questions began flooding my mind with what this meant for her physically, socially, emotionally and how to best help her navigate this going forward. GUILT consumed me. I agonized over what I could have done wrong to cause this. Then guilt consumed me with ‘it could be worse’ so I shouldn’t feel so upset. 

parents hold their newborn daughter who has a limb difference
Courtesy of Joan Loyd

But the truth is, while my feelings were all totally valid and I have now learned are very normal reactions to congenital limb difference discoveries, I could think of nothing I had done wrong and that may have been the biggest blessing in disguise. I knew, 100%, I had done everything right and followed all of the ‘rules’ and guidance from my doctor. That was what brought me peace of mind in the end, but it certainly didn’t take away that guilt completely. I battled it for many months to follow, and it took me a long time to not overwhelmingly notice my daughter’s limb difference in everything she did.

I had known someone in high school with a limb difference who did ALL the things, so I knew in my heart Landyn would be okay overall. But I still had so many questions about HOW this had happened. I put on a smile and brave face to the hospital staff and my family. But it took me days of silently crying alone to finally reach out on a local Facebook group to see if anyone had experienced this before and had doctor specialist recommendations. Over and over again I was recommended to the same hospital in Dallas, and some moms I knew who saw my post started connecting me with other moms they knew with similar experiences. I could finally breathe again. I had a plan, next steps, and connections. My feelings were valid. My concerns were legitimate. 

Forming Connections

One of these connections was Hannah, who had gone to my same high school but was a year younger. I was initially way too overwhelmed with all of it, and too recently postpartum, to be able to really deep dive a connection with Hannah. We reconnected a few months later when she was working on bringing Tony Memmel to guest speak in Houston at some local churches and schools. Being a first grade teacher in the community, I was able to collaborate with her on this and arrange for him to come to my elementary school. During our planning, I met Katelyn, who Hannah had met the year before. She had similar goals and aspirations for ways we could spread limb difference awareness. These conversations sparked the idea for creating a local organization to support limb difference families and host events, and No Limbitations Texas was born. 

After visiting the specialist, we learned Landyn did have symbrachydactyly. She is now a year old and has met all of her growth milestones. She is funny, silly, chill, and extremely determined and independent. I don’t notice her limb difference most days, but our passion to educate others has continued to grow.

family of four stands together
Courtesy of Joan Loyd

Spreading Awareness

When discovering our children would be born with a limb difference, we each felt ourselves suddenly faced with difficult situations. Trying to understand how and why this happened, or trying to find support came with challenges. Learning how to best support our children with the right doctors, resources, language, answers, and reactions when other kids and adults asked questions; has become a priority of ours, all while helping them feel confident and loved. It all felt so important. Finding the answers and a support group of moms in Texas to share experiences with was harder than it should’ve been. We are three moms who are so lucky to have found each other, and want to help others as we continue to grow with our knowledge and resources.

women of group for children who have limb differences
Courtesy of No Limbitations Texas
Three children with limb differences take picture outside together.
Courtesy of No Limbitations Texas

Having three people start an organization together can sometimes present challenges. Three different opinions means coming to a common decision can be a bit more tedious. It means we are working around three different schedules and families, each of us with different voices and experiences. But it also means there are three sets of eyes to look at things, three different brains to come up with ideas, and three hearts to give perspectives. We are grateful for the opportunity to work together and make a difference for our kids’ lives and the lives of those we connect with.
Our organization hosts limb different guest speakers to schools in the area, donates books to schools on acceptances of differences, and hosts events for kids to meet others just like them (which many have not been able to prior to our organization).

We are working to spread awareness and change the dialogue surrounding limb different stigmas and we want to normalize differences through exposure and education. As moms, we felt like there was a lack of support and knowledge when finding out your child has a difference, and we wanted to help provide a safe place for people to connect and not feel alone in their complicated feelings. I am so excited to see everything Landyn and our group, No Limbitations Texas, will accomplish in the years to come.”

Three families of children with limb differences take picture together.
Courtesy of No Limbitations Texas
Three children with limb differences put their affected limbs together.
Courtesy of No Limbitations Texas

This story was submitted toLove What Matters by Joan Loyd of Houston, TX. You can follow Joan on Instagram and No Limbitations Texas’ journey on Instagram, Facebook, and their website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read Hannah’s and Katelyn’s stories here:

‘Your baby’s left hand is missing.’: Mom shares discovering son’s limb difference, power of support community

‘I felt like I lost all dreams for my little girl. I know now that’s just silly.’: Mom shares acceptance of daughter’s limb difference, building local support community

Read more stories like this here:

‘As my daughter studied Cinderella, I wondered why there were still no princesses who looked like I did.’: Limb difference advocate embraces unique beauty cosplaying princesses

‘There’s an issue with her hand.’ I was scared. It was inverted backwards, and she only had 3 fingers.’: Mom ‘shocked’ after daughter born with limb difference, ‘I was determined to protect her every way I could’

‘This moment will stick with me forever. She became REAL to me.’: Father to daughter born with limb difference creates fictional world ‘aiming to accurately represent disability’

‘All humans have 10 fingers.’ Everyone turned to stare at me. ‘Well I guess not EVERYONE.’: Teenager raises awareness about limb differences, ‘Difference is beautiful’

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