DAILY LIVING & MOBILITY

Changing the Narrative with a Limb Difference

Congenital Limb Condition

Lis Rhodes

From the Beginning: born with Amniotic Band Syndrome (Limb Difference)

When we made the choice to adopt, and were awaiting the call that a birthmother had chosen our family,  my husband and I had never heard of Amniotic Band Syndrome. I will never forget when the call finally came, and those words were spoken and explained to us for the first time. They informed us that this little baby girl would be born without the lower left portion of her arm. It was not what we were expecting. Fortunatley, we were on the same page from the beginning and did not really hesitate. We had discussed early on the possibility of congenital defects and our openess to those types of cases. We knew God was going to bring the right baby to our family, so we had committed at the beginning of the adoption process, never to say "no."  So, with this phone call, we said yes! A few months later we were in the hospital, only hours after Neriah was born. We were so anxious to meet and hold her for the first time. Her Daddy tells her the story of peering into the nursery window and seeing her "rosebud" (that's her nickname for her nub) pop up and how he yelled out "that's my girl!' He tells her that's how we picked her out from the very beginning. He tells her that's part of what makes her so special. We held her and fell in love with every inch of this perfect little baby that they placed in our arms.

Challenges faced with having a Limb Difference

As the months and years passed, and Neriah began to grow, we began to encounter challenges.  Most obstacles came from outside sources. There were, and still are, many stares and discouraging "opinions" that people cannot seem to keep to themselves! We have slowly become immune to the stares. In fact, we often joke as a family that when we notice people with lingering glares, we forget why for a short period. We try to figure out what in the world we have going on that would provoke such prolonged looks. Honestly, my first thought as her mom is usually "Wow, What outfit did I put her in today? She must look SUPER cute!" As a mother, when these moments come, while my heart breaks for the potential pain being inflicted and my inability to stop it, I try to find encouragment and inspiration watching Neriah. I notice the drive, determination and confidence that she has been blessed with from the very beginning of her life. She has adapted so well along the way when learning to crawl, walk, dress herself, cut her food, all of the normal milestones she conquers with no difficulties. The challenges, as I stated earlier, seem to come from limits that the world wants to put on her. She has experienced bullying at times from her peers, stares from curious eyes, children who act "afraid" of her because she is different and mothers on the playground, grabbing their kids hoping to quickly leave or divert their attention before they have to answer any "awkward questions." (This one I notice more than she does at this stage). All of this she has dealt with at the young age of 5, but STILL she perseveres and her confidence is seemingly unscathed. She loves with a huge heart and wants to engage everyone around her. As her mom, I want so badly for everyone to know NERIAH and her spirit and not just what she is would appear to be lacking when they look at her.

Changing the Narrative

As a result of this desire, I tend to step in when difficult situations arise, often times too early. Our family recently went to a park where Neriah encountered a little boy who asked her about her arm. She answered him, telling him she was born that way, and then continued to try to play with him. On the advice of my husband, I decided to let Neriah navigate this, and to sit back and observe. They walked over to the slide and he stopped her, telling her "You can't do this! You only have one hand." Neriah quickly ran past him, climbed up the slide, slid down, and ran back around, passing him as he was climbing up the ladder. (She had the biggest smile of course). They then went on to the swings... Again, he put his hand up and told Neriah "You can't do this, you only have one hand." Well, again, Neriah climbed all the way up, sitting straight up on the swing and pumping those little legs so fast it had me exhausted just watching her! Meanwhile, her little friend just laid across the swing on his tummy, seemingly envious of the height that Neriah was gaining on her swing. Bored on the swings, the little boy then moved over to the sandbox, where Neriah quickly joined him. They sat and played for a few minutes, until Neriah jumped up, did her favorite yoga pose (the tree for those yoga enthusiasts reading) and said to her friend, "Do you want to do yoga? I can do yoga too!" To which the little boy replied, "No thank you, I can't do yoga... but we can both play here in the sandbox." And that is exactly what they did.   I realized a lot as her parent in that moment. I realized that Neriah will never be told by anyone that she CAN'T do something. She will prove them wrong, over and over, by doing what it is they believe she is incapable of. I realized that as hard as it is to allow her to be in situations that may be hard or hurtful, I have to allow HER to be the one to navigate those waters, in order to prove to others and to herself that she CAN. I learned that there will be no one in Neriah's life better equipped than herself for changing this narrative. She will be the one to change the preconceived ideas that people will have about her. She will change those things, by simply DOING what others believe she is unable to do.

Yes She CAN

So to truly highlight all that is Neriah in this story, I want to share the MANY things Neriah has been able to do in her 5 short years of life. Things that others would tell her she couldn't. Neriah loves to bowl! (And is very good at it) As I mentioned before, she is very good at yoga, she is an incredible little artist, she enjoys swimming, hiking, horseback riding and anything outdoors. Perhaps the most unbelievable and awe-inspiring, she has recently started playing the violin. Her brother used to play, which planted the seed in Neriah's little ambitious heart. Thankfully, we have been blessed with an incredible violin teacher who told her from the very beginning "Neriah, we will figure it out!" She reached out to a few engineering schools and found a young, biomedical engineering student from LeTourneau University, who had a heart that desire to expand the worlds of those born with limb deficiencies- a desire to change the narrative. This young man made Neriah a little device out of a 3-D printer, allowing her to hold the bow. And, he made it in her favorite color, PINK! She's just exploring this new passion, but again, the word CAN'T has never even entered into her mind. Thankfully, it has not entered into the minds of those around her either.   Neriah continues to inspire those of us who are close to her, and hopefully,  everyone who encounters her as she journeys through this life. I am not naive to think that she will never have difficult times as she grows up. I do hope and believe however, that through the encouragement she gets from others, and hopefully through continued education and awareness surrouning limb difference, the world is going to be one HUGE adventure for Neriah. I pray that she will always believe that she CAN do anything her heart desires to do. And I pray that this world becomes more and more a place where our differences are not something to be scared of, or to avoid talking about, but something that can bring us to a better place of understanding and supporting one another.

EMPOWER OTHERS!

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