I started this Internet search in hopes of finding other parents like myself to learn of ways to help support my son. Turner is my first child, and his PFFD was a complete surprise. He was 2 weeks early, born 2 days before Christmas 2003, beautiful, and otherwise healthy. His condition was so sever that he was born with only a small footpad and two toes. He saw many doctors while in the hospital and no one could tell my why or what was wrong with my son. My father-in-law is a member of the Masons and immediately went to work setting us up with Shriners. At 6mths we were told he had PFFD and would need a stymies amputation before the prosthetic process could begin. 7mths old and my son was going to have surgery, I was beside myself with worry. All went well and by 11mths he was fitted for his first prosthetic, and walking by 13mths. His lack of a leg has not seemed to bother him, until now.
7mths ago I had my second son, and Turner was concerned for the 1st time that everyone else had two legs but him. I am lost, beside myself with worry about his mental health. Until now he never questioned his condition. Now he says that when he gets bigger he'll have a leg with skin and won't need a prosthetic anymore. It's hard to explain to a 3 year old that you will always need a prosthetic. We live in a small area of southern California, and make trips to Shriners in LA.
In January Turner will under go a knee fusion and removal of two growth plates. After he heals he will be fitted for a new leg with a knee. Things are really looking up for him, but with no one around who has his condition it is hard for him to see past his "Specialness". I point out people with prosthetics when I find them on TV or the Internet. I just wish there was a convention for this condition that I could take him to so that he could see that he is not the only one with this "Specialness".
Comments
Turner's Story
Hello Turner's Mom,
Please try to relax and realize that Turner may go through several "phases" as he matures, but all will come out fine in the end! The most important thing is for you to treat your son like any other little boy, whether his prothesis is on or off. He's not just an "amputee;" he is a "Little Boy" who had an amputation and may need more surgery to help him be as fully independent as possible.
BTW, I am a 55 year old woman born with PFFD before it had a name. I had 13 surgeries -- including 3 experimental ones that failed to help -- between the time I was 13 months to 9 years of age. My parents were wonderful in how they loved and treated me like any other child with age-appropriate responsibilities and full inclusion in anything our family did. I now function as an above-knee amputee (whith my own knee fused and the lower 6 inches of my shin and foot amputated.)
It took me till college to fully come to accept my body an "normal." I finally figured out that "disability" is a part of "life" and lot's of other folks have "differences," too. What helped me the most was meeting other people with disabilities -- not just amputees -- and getting to know about their wonderful, fulfilling lives!
I think high school was the toughest time for me because of my self-image as a young woman, but when I was little and going through all the surgeries I never thought I would live to grow up; I'd never seen an adult like me then in my little home town in Illinois and many of the children I met at the hospital in Chicago died over the years. I just thought that was the way it was... until one Valentine's Day when a very awkward and shy WWII veteran showed up at our front door with a heart-shaped box of candy. He gave it to my very surprised mother, who did not know the man at all, telling her it was for me. Then he left without another word.
Inside the box of chocolates was this message: "To Nancy Timbertoes, from Ol' Wood Foot. Happy Valentine's Day!" (Those were still the days of true "wooden legs.") It turned out that he was a distant neighbor who had lost a leg in the war. He had met my father and learned about my recent surgery. He had 7 children of his own, many of whom later became my playmates, but it was the brief, but frequent, visits he made to see me over time that really made me feel like I was not alone.
Here are some ideas that you might explore for Turner and you:
You might contact his surgeon at Shriners to see if you could take him in to visit on a "clinic" day when other children with pffd might be present. Or, you could ask to arrange a visit to another family who has a child with pffd and will be at the hospital for surgery or might even live nearby.
And, there is an annual conference you could take Turner to see! The 2008 Amputee Coalition of America (ACA) Annual Conference
will be held June 19-22 (includes pre/post conference sessions/events) at the Renaissance Waverly Hotel in Atlanta, Georgia.
Also, the ACA offers connections to on-line and in-person peer support from other amputees who are trained to assist you and Turner at their website (I have taken the training and it was very good!) Go to: http://www.amputee-coalition.org/ and click on "Peer Support" which is the 8th item down on the left-hand side for any number of options.
Finally, you might try contacting your nearest Center for Independent Living to see if they might have a Peer Counselor who is an amputee and could mentor Turner. You will find contact information at this link: http://www.ilru.org/html/publications/directory/index.html
Just click on California on the map and then scroll down to see where there may be a Center near you. This list has full contact info and is updated regularly.
If there is anything else I might do to help, please let me know!
Wishing you and Turner all the best!
Nancy