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HHF Mom Writes Article for Sentinel News About Her First Winter Outing

We all know what it feels like to enter a room where you don't know a single person - never mind a ballroom packed with 300+ strangers who all belong to a support group! Well, Abi Healey takes us through her personal experience and captures the essence of what our wonderful group is all about.  Thank you, Abi, for sharing your insight and joy!  We look forward to seeing you at our events for many years to come. heart

Copied from SentinelSource.com - March 7, 2013 - http://m.sentinelsource.com/mobile/parent_express/resources/organization-honors-kids-with-upper-limb-differences/article_47c9d600-8752-11e2-a9d6-001a4bcf887a.html

By Abigail Healey: "Walking into the large ballroom at the hotel was a bit like being at a family reunion – only I had never met any of these people and they had never met me.

All of the families present, however, had something in common: we all came with our “Helping Hands children” – our kids who were born with upper limb differences. Upper limb difference can take many forms, including missing hands, fingers, arms or bones.

On most days, a person who walks through the world missing an arm might feel an outsider. At the Helping Hands gathering, such a thing is not only normal, but also celebrated and honored.

“Because of Helping Hands, I grew up thinking about my limb difference with a sense of pride and determination,” said Valerie Peters, 24.

Everyone has experienced the feeling of being an outsider at some time in their lives. We’ve all been “the only one” in a room – the only Jewish person, the only person of color, the only person without a college degree, the only one who likes Top 20 music.

Some people relish this feeling and pronounce it, welcoming the attention that being “the only one” brings; others try to hide it. Physical difference, however, can be a powerful attention-getter, and one that is nearly impossible to hide.

People with physical differences gather this attention regularly, which often comes in the unwelcome forms of comments from strangers, stares, fear, teasing or pointing. For someone with a unique physical difference, being “the only one” in a school, a neighborhood or even a whole state can be isolating.

Helping Hands is a foundation that is organized to support and connect families of children with upper limb differences. This support comes in the form of twice-a-year gatherings that allow for families and children to get to know each other, ask questions and get relevant advice on everything from surgery and prosthetics to self-esteem and hair drying.

It also allows children and parents to know that they’re not the only ones; it is a lifeline to normalcy.

Elisa Peacock, from Pleasantville, N.Y., has been coming to the gathering for eight years with her 10-year-old daughter Lauren, who is missing her left hand.

“When she was a baby, my husband and I were coming because we wanted to know we weren’t the only ones. We had very specific questions, and wanted to know why this had happened. … and then I realized from talking to other people that it doesn’t matter (why it happened).”

She describes how now, attending the gathering is Lauren’s choice. Lauren starts counting down to the gathering starting in October, looking forward to seeing the same friends year after year. “It’s a confidence booster for her—and she’s already a very confident child.”

As a parent of a child with a limb difference attending the Helping Hands gathering for the first time, I felt viscerally that I was being welcomed into a tribe. The ice had been broken before we parents ever met each other, by the circumstances of our unique children.

If this is true for parents, how much more it must be true for the children. I heard repeatedly that although the parents started coming for their own purposes when their children were young babies or toddlers, they continue to come well into the teenage years because their children wouldn’t miss it for the world.

The families present were entertained and inspired by several people with congenital limb differences. Meg Zucker is a lawyer, parent and author born with ectrodacytly, affecting each of her four limbs. Her book is called “Don’t Hide It, Flaunt It,” and that was also her leading message.

Nick Newell, missing his left arm just below the elbow, is the current Extreme Fighting Championship mixed martial arts lightweight champion. Tony Memmel is a one-handed guitarist, a musician with several albums and many national performances to his name.

Ryan Haack, a pastor and father living with one hand, writes about his experiences on his blog, www.LivingOneHanded.com, where he tackles touchy subjects like stares, tying shoes and uncomfortable situations with a comical touch.

These were inspiring performers and special guests, but perhaps more inspiring was watching the kids. The exciting talent show and jamboree on Saturday afternoon featured two girls without arms who played the cello with their feet, and another who did a full gymnastics routine, including flips and bends, with one hand missing.

Countless other children played instruments, sang and did martial arts routines confidently in front of a crowd of hundreds of people.

When we are faced with any of life’s many challenges, finding a network of support is a key factor in our ability to meet that challenge and find our strength through it. Informal networks, such as those created by friends and neighbors, and organizational networks such as Helping Hands, can be invaluable in providing emotional support for parents and children, and for creating positive feelings out of a situation that may have originally inspired fear or helplessness.

Other programs administered by the state, such as Vermont’s Children with Special Health Needs or Children’s Integrated Services, or New Hampshire’s Children with Special Health Care Needs or Early Intervention, funded through the Department of Health and Human Services in New Hampshire and the Department of Health in Vermont, can provide families with a logistical framework that supports children’s physiological needs, parents’ rights to and need for specialized information, as well as important financial resources.

This logistical, financial, educational and emotional support is invaluable to our success, confidence and self-esteem as families of children with special health needs. When we are willing to seek out these organizational and informal networks, we are boosting our knowledge, our success and our strength.

Families of children with upper limb differences are encouraged to attend Helping Hands outings, which are free of cost to participants (though the hotel room is not included). The next outing will be in July.

For more information, visit online at www.helpinghandsgroup.org.

Abigail Healey is a freelance writer, gardener and mother who lives in Brattleboro. You can read more of her writing at www.leviandfamily.com.

 

 

 

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