Our friends at HendricksHome wrote an article about our journey in the Limb Different world. Their publication no longer is in service so I have the text from the article. Originally published January 2014. Dave Giltner authored the story.
MY SPECIAL HAND
How a limb difference built a community of support for one local family. The story behind My Special Hand
Like many mothers, Jenni Thomas delivered their youngest son, Sam by cesarean section. Eric and Jenni noticed, as they were finishing the procedure, that they had taken their baby over to clean him up but there was something unusual. The nurses and doctors gathered around him. “It seemed like it was taking longer than it should.” Eric noticed. When they brought the baby over, they said, “There’s a problem… but it’s not a big deal. He was born without some fingers.”
Eric described the feeling as overwhelming. He described the joy at the indescribable miracle of meeting their son but when they said that there was a problem, he recalled the feeling of terror. “Your mind always goes to the worst possible place.” The hospital was quick to have a geneticist involved but Eric said that at that time, nothing had detail – everything was nebulous.
He went on to tell how there was a great deal of testing, the results of which determined that the cause of Sam’s limb difference was due to a lack of blood supply during the time when that part of his right hand was being formed.
Once home, Jenni went through and immediately found other people with limb differences. The first person they came in contact with was Jen Reeves of Born Just Right (www.bornjustright.com). By age 4, Sam reached the stage where his parents were challenged to help their son learn to do things one- handed. They came into contact with Ryan Haack of Living One Handed (http://www.livingonehanded.com) who had a video – How To Zip A Coat One-Handed (one of many brilliant and witty videos.)
Sam asked if Ryan had any videos about how to put Legos together. They searched but alas, there were none; however, this was the seed that started Sam’s own online world, My Special Hand. Sam told Eric, “Maybe we can make our own videos.” Sam decided that he wanted to show videos like the ones he’d seen except he wanted to show videos about “doing stuff that kids want to do.” Sam, the fierce negotiator, decided they needed a website like the ones he’d seen. Eric and Sam and Sam’s older brother, Carson, went to work putting the family video camera to use. MySpecialHand.com was born. The team launched in February 2012.
They sat down and brainstormed 4 ideas for videos. They’ve only yet done 2 of the 4 but they have produced 11 instructional videos and a video about camps and trips. Eric said that when a video is released, they try to keep another in production.
They built the site and started producing content. They were contacted by Molly from Lucky Fin Project. She thought the site was great and asked to send Sam a bracelet and a t-shirt. Then Sam was noticed by Ryan Haack (above) and Jen Reeves (above). With their support, and the support of friends and family, My Special Hand grew to more than 1,000 Facebook fans and helped to form the framework of a community of support.
Sam, Carson, Jenni and Eric put together a yard sale fundraiser to get them to Nub-ability Camp (a sports camp designed to encourage limb-different kids.) The sale was a great success and raised enough money to create a scholarship to help others attend as well. While speaking about the experience, Eric said, “This was the first time being in a group of limb different people.” He went on to explain the amazing connection that the group enjoys. He described how because of their shared differences, they don’t really ever discuss their differences, they just all get together and play. “They can concentrate on being kids. There’s no one asking them questions about ‘Why is your leg different?’ or ‘Why is your hand different?’” He went on to say that when Sam goes out places, he’s really great about just being a kid, but as a parent, standing back from the situation, some kids make a face. “A lot of times it’s because they’ve never seen anyone who is different let alone talked to anyone who is different. So they don’t have the skills to ask the right questions.”
Eric recalled a story, “We were at a swimming pool in 2012. The kids were in the pool playing, having a good time and this family comes and their two little girls are playing and having a good time too. The little brother joins and he was like ‘Ewwww! What’s wrong with your hand?! It’s gross!’ And that just came out of his mouth. The mom came over and told him to stop talking to him like that.” He continued to explain that they feel it is important, with children, to not scold them about noticing the difference but encourage and teach them to understand and appreciate the difference so that it neutralizes the fear and addresses the curiosity that some children may have. Eric said, “(standing up for his brother) Carson, told the boy that ‘It’s not gross – it’s cool! He’s got a website and it’s awesome!” Eric remarked that a lot of times, children want to know what happened. They want to know if he was hurt – they think it was an injury. Because of this interaction, the family at the pool went to the website to learn more about limb differences.
The causes for limb differences are many, but there are three primary reasons for limb difference. The first is congenital, meaning people who are born with the difference. In Sam’s case, his fingers were not fully formed due to a restricted blood supply in that part of his body. The second is through infection or disease; such as cancer, peripheral artery disease or sepsis. Doctors may amputate these areas in order to keep disease or infection from spreading. Finally, trauma may lead to amputation. Such cases may be the result of war, factory work or automobile accidents.
Sam is in Kindergarten now. For his birthday, each of the kids made him a birthday card with a sentence or two about him, along with a drawing. Eric told us, “About 90% of the cards had a picture of either Sam or Sam and the child that was doing the drawing in it. In 90% of them, Sam had two hands… It strikes me that they don’t notice it, which has been our experience. Most kids don’t notice it… because it doesn’t define him. But there were 10% of them that had Sam or Sam and the friend with varying degrees of a hand. They drew big fingers on one hand and little fingers on the other. Sam says, ‘I have two hands – one’s just smaller.’”
As a result of Jenni and Eric reaching out to those families in similar situations, and because of the community of friends that has developed, Sam is equipped to deal with physical challenges more easily. For example, there are a number of Paralympic athletes that have offered to personally speak with Sam’s teachers to better equip them with whatever assistance may be necessary for Sam to participate. But Sam is never to be underestimated. His gym teacher told Jenni and Eric that there was only one activity in which Sam ever required any assistance – the “Crab Walk.” She noted that activity is difficult for children with two hands. The solution was to shift his balance and rotate his hand, shifting his weight. In fact, the network has helped both children. Soccer Coach, Eric Westover (professional goalie for the U.S. National Amputee Soccer team) assisted Sam’s older brother Carson with a goalie clinic. In their adventures, not have they only been able to meet those of sports fame; but also Miss Iowa, Nicole Kelly, who was born without her left forearm.
In an age of miracles, among one of the most astounding is 3D printing (also known as additive manufacturing.) In this process, a material is melted and deposited (or vice versa) and then the process is repeated over and over until a physical, 3-dimensional object is created. Through investigation, Jenni and Eric learned that there were no real prosthetic options available to aid Sam in his day-to- day life except those that are cosmetic. But thanks to the manufacturing revolution that is 3D printing, Sam is now to be the recipient of a “Robohand.” This printed prosthetic device is being given to Sam for free by a lab in Nebraska. When asked the color he would like his hand to be, Sam selected red. The process usually requires a recipient to be local; however, they are testing a new process which involves a number of photographs of the limb and a new technique which will allow the lab to use video. Adjustments will be made on site. This technology will not only transform Sam’s life but the lives of many amputees. Eric estimated that the cost of a similar prosthetic device might be $20,000 or more to create, but notes that the cost involved with the printed device may be under $10.00.