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When I talk to new parents, the first thing I talk about is the baby. I focus on all the joys a new baby brings to a family and home. We talk about feeding schedules, sleeping patterns, crying, the relationship with other siblings, the new grandparents and other family members. I spend at least ten to fifteen minutes talking about the wonderful things this baby brings to the family. After I feel a level of comfort has been established, I talk about the baby's amputation. We acknowledge all of the following:
Most parents feel so helpless and confused. They do not know what to do or where to seek help. If they do get information, it seems incomplete. I try to answer all of these questions and assure them that they did nothing to cause this condition and that there was nothing they could have done to prevent it. When John and I met with the Director of Orthopedics at Northwestern Hospital, he told us that something happened on the 42nd day of my pregnancy that stopped the growth of my daughter's arm. At that time, I did not even know I was pregnant. He assured me that this was a situation that was not within our control. That made me feel better. I try to tell parents that their child will grow and develop normally, but that some of these steps will be a bit different. Most parents worry about how their child will manage to perform tasks, like tying shoes or cutting up food. I tell them stories of my own daughter's development and her successes and her struggles. Some of these steps came easily to her; others were difficult. The most important thing was that she tried new tasks and never gave up. If it was something she really wanted to do, she stuck with it until she succeeded.
Parents are very concerned about how others will perceive their child. Will they be ridiculed or made fun of? What can they do to help
their child? I tell them that yes, this will happen, but that I tried to use these opportunities to educate those staring, asking questions or
making cruel remarks. Yes, her arm is different than yours, but different is not bad. I try to identify the positive things my child can
do. Even though she does not have an arm like yours she can still play on the swings, slide on the slide and play in the sand. There have
been times when I have had to bite my tongue and not respond with a stinging remark. I always knew that my daughter was hearing my responses to
the questions. I didn't want her to feel that I was ashamed of her condition. I never covered her arm and walked away. I always looked the curious in the eye and with as much strength as I could muster, I would
explain that her arm didn't grow fully. I would follow that up with comments such as "It certainly does not slow her down", or that
she enjoys the park just as much as they do. Some people have made cruel and hurtful remarks and I have told those people that their remarks
were unkind
I tried to instill a sense of confidence in my daughter that has little to do with her amputation. She needs to feel that she is capable and talented.
It would have been very easy for me to walk away from some situations, but my daughter might have felt weakened in spirit. The person my daughter has
become is affected only in part by her limb condition.
I try to give new parents a peek at the future by telling them the trials of my daughter and others like her. They seem relieved to hear that children
with limb anomalies lead very normal lives. To know that there are others like their child is a tremendous relief.
I talk to new parents about the medical information they have received and answer questions they may have. I give them information about the medical
language they will be hearing, and try to prepare them for what lies ahead in terms of prosthetics and therapy.
I invite new parents to the Chicago area support groups at the Rehabilitation Institute of Chicago, Shriner's Hospital and most of all, the FAIM
Annual Picnic. This is a wonderful way to SEE other children with limb amputations and observe how normal and happy they are. They can meet
other parents, compare stories about development, and get strength and support from those who have been down that same path. Their children can meet
and see other children with the same conditions and know that they are not the only one who was born without a limb.
Many parents ask about having other children and whether this condition is hereditary. The research indicates that no family has ever had a second
child with a congenital limb anomaly. If they wish to have other children, they should go ahead.
Most parents are overwhelmed by the situation they are in, the information they are receiving, yet still have so many questions. I give them my phone
number and/or the number of another parent with the understanding that we can be contacted at any time in the future as other questions or issues
arise.
Peer Visitors should:
Validate the feelings of the parents
Offer support and encouragement for the future
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Copyrighted by the Amputee Coalition of America and National Limb Loss Information Center. Local reproduction for use by ACA/NLLIC constituents is permitted as long as this copyright information is included. Organizations or individuals wishing to reprint this article in other publications, including other World Wide Web sites must contact the Amputee Coalition of America/National Limb Loss Information Center for permission to do so.
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