Amanda

I’ll never forget the day Amanda was born. I wanted a girl desperately and when she was being delivered, the doctor said, “The baby has a short arm.” I remember saying, “What is the baby – is it a girl?” My husband said, “Yes.” Then I said, “Is she healthy – is she okay?” – “What did you say about a short arm?” I remember thinking, “what’s a short arm?” When I saw her, I was immediately smitten. She was so pink and round – no hair – and she had this little tiny arm with even tinier little nubbins at the end. To this day, I’m surprised I didn’t feel shock or surprise or sadness. I had my baby girl and that was all that mattered. I guess that is a mother’s unconditional love. She loves it when I tell her this story. She never tires of hearing it. I am completely in love with my little Princess and she knows it. She also loves me to the point that I’m convinced no one will ever love me, in my lifetime, as my daughter loves me.

She is confident and assertive. She is a leader and is very popular in school. She has been in tap and modern dance recitals and last year was a cheerleader/mascot for football. I was very surprised at her initiative, yet I encouraged her wholeheartedly. She can be a little shy in new situations, but readily adjusts and soon lets everyone know who’s boss.

We have tried body powered prosthesis and myoelectric prosthesis without success. She hates them with a passion. To Amanda they are unnatural, heavy and cumbersome. She does well with her “baby hand” and recently, with a lot of practice, she has mastered the monkey bars at school. She ties her own shoes, buttons her own clothes and even uses her baby hand to polish her fingernails and toenails. At first it was messy, but she was determined to do it right and now does the job as well as I do. I encourage her all the time to try anything and she does. We always figure out how to modify, to simplify. She is also very bright. At 7 and in second grade, she reads at the level of a 10 year old child. She also does not forget anything. Sometimes I feel Amanda borders on self-importance and I have to curb that reaction in the bud!

We talk about the “whys???” and we also talk about when people say God made her that way. We don’t agree…I can’t believe God singled her out and said “I am going to make Amanda with a baby hand.” My ex-husband and I went to Stanford and had genetic tests done, plus answered a million surveys, but we received no answers. My Ob-Gyn said my placenta looked normal – nothing that would indicate any abnormalities. It’s just one of those things that are unexplainable and just happened like twins. My oldest sister has a set of twins – 17 year old fraternal twin boys – she is still wondering why that happened???!! Needless to say, they drive her crazy.

I am raising my children alone and have for the past six years. Initially Amanda’s father had a very hard time with her limb loss. He was devastated for the first couple of years. After our messy divorce, he finally came around and now has a wonderful and warm relationship with Amanda. It took a while, but he finally saw past her limb deficiency. I also have a twelve year old son who was shaken as a baby (first marriage) and then last year was struck by a car when crossing the street. He ended up in a coma for seven weeks and after spending almost four months in the hospital, he came home. He has been through a lot of rehab and therapy and recently began walking again. His mind remained intact and although the original prognosis was very grim, we expect an almost complete recovery.

I work in social services and am currently involved in Welfare Reform. We do job training and send clients to schools to learn trades. I really like what I do. I have been working for government for almost twelve years. Right now I only work part-time – 20 hours per week because Jeff, my son, still requires a lot of care. Working part-time allows me to volunteer at both of my kids’ school which I really love. I’m hoping to return to school to get my teaching credential and eventually teach.

We live in a small town in the California. We have one other child in our community with a limb deficiency like Amanda. I met his mother because she was one of my son’s nurses at the hospital. We had heard of each other, but had never met. The area we live in is very beautiful except for the
earthquakes. We get a lot of those unfortunately! Our little town sits on two faults so we shake, rattle and roll a lot!

I would love to correspond with other parents or caregivers who have similar situations.