Jean

Keith and I when we got engaged in Colorado!

In 1962, I was born with limb deficiencies of all 4 limbs: bilateral below elbow deficiencies, and bilateral pffd (proximal femoral focal deficiency). I was lucky enough to get through my childhood with only one surgery (a procedure to separate the fingers of my left hand), though many, many were recommended for me. I also recall my mother fighting with an orthopedic doctor who insisted I should be fitted with both lower and upper extremity prostheses (because I would “want to look normal when I was older . . .”).

At the age of four, instead of amputating the little feet I had, I was fitted with bilateral extension prostheses for mobility. I still wear the same style. I walk without canes or crutches, though as I’ve gotten older and have acquired kids, I’ve used an electric mobility scooter more and more often to go farther and faster.

Really, very little of my self-image has had to do with my “defects”. I had always assumed I’d finish college, live in my own apartment, and be gainfully employed, all of which did occur; I’d assumed I’d marry and have children. It’s hard to explain; I guess my self-image is based on a general feeling of well-being and a search for mastery of life and situations, rather than on my short arms and legs. It’s a self-image based on soul. It wasn’t until after I actually had my twins, Jake and Andy (in 1995), did I realize the world considered it an “amazing” thing that a woman with so significant a disability could have a “normal” pregnancy and babies without limb deficiencies. I point this out because since my involvement on this list, starting in 1996, I have heard many a parent worry over their children and how the world will perceive them. For many of the children, this perception is/will be irrelevant. They will be busy living, growing, and enjoying, and far too busy to lament their plight, and often simply uninterested in the doubts that the world will impose. Surround them with love and encouragement, and you will have done your job! I know it’s impossible to tell a parent not to worry, but I can tell you that the pain that a parent feels is most often not experienced, in the least, by the I-CAN child.

Another I-CAN chapter . . .

At the beginning of the new millennium, I came across a picture posted in the I-CAN Adoptable Children section, of a little girl in India, not yet two years old, with arthrogryposis, a congenital disability that caused joint abnormalities in all of her limbs. I inquired about her, having no idea what was involved when a family seeks to adopt.

From the beginning, I had felt called to parent Priya, so there was obviously a higher power at work through all of this. There were many bureaucratic snags, and we watched as Priya turned 2, then 3, and we waited and waited. Priya turned three in May 2001. We thought she would be home in the summertime, but as soon as all red tape in India had been conquered, it was discovered our FBI and child abuse clearances were just over a year old and expired! We had to re-apply, and had an additional six weeks to wait. Finally, Priya was scheduled to go with a Families for Children social worker to the US Consulate in India on September 11, and, needless to say, no one anywhere in the world went near a US consulate immediately following the events in New York on the 11th, in 2001. We went through a scary time, second guessing whether or not we could even get Priya out of India, and whether the social worker (Mr. Gandhinathan “Gandhi”) would still want to escort Priya to the US. As it turned out, this only accounted for an additional two week delay. Suddenly, it was going to happen, and we were making plans to go to Newark, New Jersey to pick up our girl!

Priya was the most beautiful little thing, when we first saw her in the lobby of the Newark Airport Marriott, on October 13, she was seated on a couch like a princess, all covered up with a white blanket.

Priya’s disability was caused by a lack of movement in utero; her legs are crossed, like sitting Indian-style, and don’t have much flexion out of that position. Her arms are also affected, with muscle weaknesses, internally rotated shoulders, and limited use of elbows and hands (though she has an enormous advantage over many children with arthrogryposis, in that she has good dexterity, and can bend her elbows). Arthrogryposis is a non-degenerative condition.

Priya did some crying once Gandhi left, then some sleeping, then some happy playing and bonding, which was wonderful; then some more sleeping. Over the next 24 hours, we noted she would only drink water, would eat no food, and slept excessively. By the next evening, we made the decision to leave early, and started an all-night drive to Rochester, and when we arrived home, we took her directly to the pediatrician. She had lost about 4 pounds since her last recorded weight, which for a 3 1/2 year old who weighs only 23 pounds on a good day, was a huge weight loss. And all she wanted to do was sleep.

To make a long story short, she had to have some perfectly horrible blood draws, before it was determined she had critically low blood sugar, and was admitted to the hospital for 3 days, with an IV in her jugular vein. She was weak and cranky, but she eventually started eating again, and “hallelujah” was finally able to come home on the 16th!

I am grateful to I-CAN for giving to the “amputee community” a vital network which has helped so many parents and children; I’m grateful that it gave me an intro into mentoring which I now also do in my community here in the Rochester, NY area; and finally, I’m grateful to I-CAN for my daughter Priya! She’s not an amputee, but she, too, is an “I-CAN kid.”