A couple Saturday's ago, our family went on an outing to the Children's Museum at Navy Pier. We went to meet up with a group of other youngsters who have the same or similar "limb differences" as Muriwai; our beautiful 8 year old daughter who was born without her left hand! This event was organized by Born Just Right; an online community started and inspired by a mother (Jen Lee Reeves), who has a 7 year old daughter (Jordan) with a "limb difference" very similar to Muriwai's. They had provided us all with free tickets to the Museum and a meal each from Navy Pier's food court.
It was a truly wonderful day, as we were able to meet with other families who had also made concerted efforts to travel to downtown, Chicago, or into the big city! We all went with the sole purpose of wanting to connect with other folks who share similar experiences and stories. To my understanding, over 40 people attended, and it was great to meet and chat at length with Ryan Haack from Living One-Handed, he has the same "limb difference" as Waiwai and drove down from Madison, Wisconsin, to join in the festivities.
Ever since Muriwai was born, our family has been going to gatherings similar to these. Beth and I have always made it one of our priorities; we started going to FAIM (Families of Amputees In Motion) picnics every year. When they sadly ceased to happen, Beth joined with a couple other mothers and they organized some new ones. I discovered Saturday's Born Just Right meet-up while surfing Facebook a few weeks ago.
These "limb difference" picnics and gatherings, always, I repeat always, inspire and challenge me, because they aren't depressing events of regret or of "what could have been", but of celebration in a bunch of kids who have embraced their differences and are living life to the full. I love watching these courageous youngsters navigating through this "2 handed world" with outstanding confidence and determination. I love watching these kids tackle any and every obstacle with so much strength and courage, and then I feel ashamed as I watch myself "give in" or "give up" out of my own fears, insecurities and weaknesses. I walk away knowing that these courageous youngsters are not just amazing, but wonderful examples to the rest of us.
Muriwai is now 8, and I have watched my little girl patiently and confidently react to every stare, question, touch and grab. She loves being outside and going to the city playgrounds, where she'll inevitably be surrounded by interested children, asking "what happened to your arm?" Little ones grab her arm, wanting to feel it like it's a mysterious toy, sometimes not wanting to let go. Older kids are intrigued, so they ask genuine and concerned questions about what happened and whether it'll grow into a hand one day. They also want to know what she can and cannot do! A frequent and somewhat amusing concern of this agegroup is; "what if she's left handed?" Meanwhile, many parents see their kids surrounding Waiwai and react out of embarrassment, anger or countless apologies, so they try to hush, hide or hurry along their overly zealous and curious youngsters.
This has been our family's experience, Beth and I have looked up and seen 10 kids of all ages surrounding our daughter, asking, touching, grabbing and staring at her "special arm". These kids aren't being mean or bullying her; they're kids, they're concerned, they want to know, so they ask! Muriwai patiently responds that God made her this way and she can do everything they can do, and normally ends up making new friends out of these encounters. Occasionally, Beth and I need to go "rescue" our daughter from a overly focused younger child who will endlessly trail and grab her arm!
The amazing thing about these courageous youngsters is their natural abilities to calm down the anxieties of their fretful parents. When Beth and I went to Muriwai's 20 week ultrasound, the doctor and technician returned after a very long delay with words no parent wants to hear; "we've noticed an abnormality" and then she turned her attention only on Beth and asked her if she wanted to terminate the pregnancy. Beth immediately replied, "No! We're going to love our baby no matter what we have to face!" The doctor actually looked visibly relieved at Beth's very candid response. She showed us the pictures that still could not reveal whether we had a boy or a girl, but emphatically revealed how her left arm was considerably shorter than her right arm.
We sat there, dumbfounded! We shed tears! We hugged! We prayed! We were confused, we'd never heard of that; "what? She has no left hand?" We went home and tried to digest this unexpected announcement. I fasted that week, we shed many tears, wondering and praying about how our fragile little daughter would cope in a 2 handed world; a world full of bullies and societal demands for conformity, certain types of beauty and excellence. I'd only seen her photo, but all those over-protective daddy instincts rose up within me and this new realization caused me to love my unborn child in such an extremely deep way that week.
At these "limb difference" gatherings, whether we were surprised at our child's birth or at an ultrasound, parents share similar stories of shock! Each and every one of us worried about the difficulties and hardships our fragile ones would end up enduring, simply because our little youngsters were different from the norm! But our lil' ones starting growing and tackling every obstacle with courage and determination! Our lil' ones didn't worry like us parents; they just moved forward confidently. Our lil' ones quelled our fears and anxieties by simply accepting their difference and embracing the lives God gave each and every of them.
These "limb difference" meet-ups aren't just for our courageous youngsters, but also for us fretful oldsters! New parents, riddled with anxiety and all the "why me?" questions, get their fears relieved by meeting the "been-there, done-that" parents and seeing our older youngsters living happy joyful energetic lives. Doom and gloom vanishes when a new parent realizes that there are plenty more families traveling down the same mysterious road; and that road is full of joy and happiness!
Muriwai never ceases to amaze us. She has far more confidence and courage than I ever had at her age. As the photos indicate, she loves ballet, playing basketball and archery, but she also has a heart of gold, as she prays passionately for people (by name) who are suffering, injured, homeless and sick. She constantly reminds Beth and I of our need to remember those suffering.
I'm going to close by mentioning a couple comments or slogans that Muriwai has said over the years that sum up the spirit of our lil' courageous youngster and the rest of these courageous youngsters we meet at these "limb difference" gatherings.....
"I can do it myself!" Muriwai used to say this all the time. Whether it was carrying something heavy, getting dressed, tying her shoelaces and helping with a chore, she always made it clear to us that she's determined to do it by herself. She carries that enthusiasm and that determination to this day.
My final point may confuse many readers; Muriwai loves her "special arm" and she sees it as something special God gave her. She does not view it as a disability or a hindrance. Many of her friends, even her older brother (Cyrus), have made random statements wishing that they also had a "special arm". I can only recall a couple times she's wished she had two hands and this normally pertained to an inability to tackle a certain obstacle, like the monkey bars or doing a handstand!
All this leads up to my final story; one night I'm putting Waiwai to bed and we have this conversation; "Daddy, when I go to heaven, I still wanna to have my special arm, but I also wanna be able to do the monkey bars. Can God do that?"
"God hears you, loves you and He has the power to do that for you! He can do anything!"
"Good. Because I love having my special arm, but I also really want to do the monkey bars."
"Good night sweetheart! God knows."
She smiles and I wander out of her room smiling with a tear in my eye, knowing what an amazing courageous little youngster, Beth, Cyrus and I have been blessed with.