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Heidi© all rights reserved
We were introduced to the world of amputees a couple of years ago, when during a routine sonogram we discovered that our youngest daughter would be born missing parts of all four of her limbs. We have since discovered that it's not a bad world at all, and that raising an amputee child means that we are living with a little miracle girl who is amazing everyone with what she can do. We know that God placed her in our family, and she's just a happy, rambunctious, and precious blessing. It took us
awhile to discover that raising an amputee child was going to be alright. Part
of what has made our adjustment easier was attending our first I-CAN gathering
when Heidi was a newborn. Meeting other I-CAN kids and mentors helped
enormously in making us realize that Heidi would be just fine. When we first saw our little girl and her short limbs on that sonogram when Dawn was 17-weeks pregnant, we were stunned, scared, and wondered what we had done, what we could do, and how we were going to cope with having a child who would be a quadrilateral congenital amputee. The rest of the pregnancy was very hard. In Dawn’s words, “I can't tell you how much I cried, grieved, prayed, begged and pleaded with God to "fix" our baby.” We are Christians, and so we turned to God with our fear, confusion and sadness. God came very close to us during that time, and in almost tangible ways I could feel His presence, His comfort, and His (what I thought was bizarre) assurance that things would be fine. The verse that kept leaping out at me from the Bible (Psalms 27:14) was, "Wait for the Lord; be strong and take heart and wait for the Lord." (I couldn't figure out what I was waiting for, and that verse didn't make any sense to me. . . until Heidi was about a year old.) A special moment for Dawn during the pregnancy occurred one day as I was paging through my Bible, in one of those panicky moments when I was scared of what the future would hold for our soon-to-arrive baby. I was crying, and telling God, “I can’t do this! I can’t!” Then I heard a voice which I know was God, and He told me, “I’m not asking you to do this. I will do this.” Even though I was still scared, I began to believe that somehow, things would be alright. And now that Heidi is a toddler, I can truly tell you that everything is alright! When Heidi turned about a year old, she suddenly started doing things that absolutely amazed most people who knew her. She started feeding herself, drawing with markers, playing with dolls and other toys just like kids do, but in her own way (usually bringing her arms together to pick up things, sometimes using her mouth or chin). She also became mobile--scooting, hopping, and rolling all over the house. And I began to understand why God wanted me to "wait." I needed to wait and see how God was blessing Heidi, and I really needing to stop worrying. At two years old, some of her favorite pastimes are playing with her dolls, feeding them bottles, giving them pacifiers, wrapping them up in blankets. She also loves to pretend to cook and stirs with a spoon in a bowl. She dances to music, climbs up and down stairs, draws on paper any time someone gives her a pen, turns pages in books (one page at a time), puts Lego bricks together and takes them apart again, strings beads onto pipe-cleaners, eats some foods with a spoon and eats any finger food with her arms. God has blessed her beyond measure, and of course He still provides comfort and assurance during those times when my "Mommy heart" needs some extra bolstering. Sure, there are times when we get really tired of the numerous stares from strangers, and it does get tiring needing to help Heidi with some things that she hasn’t figured out how to do yet, such as climb up on the couch (it’s too high for her), get dressed, and maneuver some toys for her that are a bit beyond her ability right now. Some things Heidi can’t do yet simply because she’s too short and low to the ground, or too young yet, while other tasks require longer arms than she has. However, we expect that she will find a way to do most things because she has been able to figure out how to do many other things that we thought she couldn’t do. Our I-CAN family is also an incredible blessing, and we can’t say enough good things about the mentors and I-CAN families in this organization. A pivotal moment for us in our whole attitude about Heidi’s abilities occurred at our first I-CAN gathering in Chicago, when Heidi was about 4 months old. We arrived with our baby and were welcomed unconditionally by people who have all “been there.” We spent a weekend watching amputee kids swim, eat, play, and just act like the normal kids they are. We also spent that weekend getting acquainted with the incredible mentors who were willing to answer the most awkward questions with grace and candor. We still see that as one of the high points in our amputee learning experience. I-CAN has helped us learn to never put limits on Heidi, and she continues to amaze us with what she can do. Something else that is unique about Heidi are her jaw and tongue. When she was born, she had feeding problems, and when she kept losing weight, we were getting pretty desperate. A friend looked at Heidi’s mouth (which is where the doctors weren’t looking!) and said it looked like Heidi had tongue-tie. Two ear/nose/throat specialists later, we discovered that Heidi doesn’t have tongue-tie, but seems unable to lift her tongue and it deviates to the right side of her mouth. She also has a small jaw. Fearing feeding and speech problems, we braced ourselves. However, Heidi’s feeding problems disappeared when she was 10 days old (a lot of people were praying for her!). When she started on solids at 6 months, we found out she just needs to take smaller bites than typical kids, and it takes her a little longer to eat. We’ve heard that jaw and/or tongue issues often correlate with quad congenital amputees. Heidi has been followed occasionally by a speech language pathologist since she was about a year old, who says that Heidi’s vocabulary is way beyond “normal” for a girl of her age, and her pronunciation is at about the 25th percentile for a girl her age. The pathologist says she expected all kinds of speech issues when she examined Heidi’s tongue, but she is surprised and pleased each time Heidi has an appointment with her, as Heidi seems to be adapting and doesn’t seem to be bothered by her tongue not being very mobile. A word about prosthetics: While we have a power chair for Heidi (which she drives very well at only two years of age), we also are working with a physical therapist on teaching Heidi how to use prosthetic legs. It’s a slow process, as Heidi gets around so well without prosthetics that she has little patience for us strapping heavy prosthetics onto her and slowing her down. Other than practicing walking in prosthetics about five times a week, Heidi doesn’t need or use prosthetics at home, and it’s difficult to practice away from home. She’s learning to take a few steps in her prosthetics, though, and we hope that she will accept prosthetic legs as an option for certain activities where wearing her “legs” would work better than scooting around on her bottom or using her power chair. We never, never make Heidi feel as if she MUST wear the prosthetic legs to appear “normal,” as she is perfect the way she is and doesn’t need anything artificial to make her “whole.” We have no plans for prosthetic arms or hands, as Heidi uses her own arms so well (as described previously). We’ve decided, “Why mess with something that already works?” Please email us with questions, and we’ll do our best to answer. And if you are a family who is privileged to have an amputee child, please attend the next I-CAN gathering and discover how wonderful it is to be a part of the I-CAN family! Please email us with questions at Burke.DB@mindspring.com |
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A very special
THANK YOU to Wyatt and Michelle who are the proud parents of Joe
(RBE) for donating the www.child-amputee.net domain and web space.
Copyright © 2004
International Child Amputee Network
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