A Tribute to Amanda
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A Tribute to Amanda |
| The following is a tribute to Amanda Ward, daughter of Jim & Missy Ward, who died at age 10 from respiratory complications of Niemann-Pick Type C and cystic fibrosis. Amanda had also had a liver transplant at the age of 3 months. Amanda is the sister of Chelsea Ward, a student at St. Clement of Rome School in Metairie, Louisiana. Amanda & Chelsea's brother, Adam, also died at age 10 from the respiratory complications of NPC. Amanda's mother, Missy Ward, read this tribute at Amanda's funeral on December 31, 2004. | ||
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I know Amanda touched everyone here in her own special way. Although she only lived ten short years,
she managed to accomplish more in the way of teaching others than someone who has lived well into
adulthood.
For all the children we’d meet in grocery stores, malls, elevators, and elsewhere who would loudly ask their moms, “Why is that little girl in that chair?”, or “Why does she have that thing in her nose?”, referring, of course, to her oxygen canula, or, “Why can’t she speak?”, they learned that not all children can do the things they do, and not everyone looks the way they do. But they are people just the same, just different. And to their moms who tried to hush their questions while still in our earshot, trying to spare Amanda’s feelings, they were helping their little ones learn compassion, and more importantly, they were reminded of what a blessing their healthy children are, and perhaps said an extra prayer of thanks that night to the Lord. To all of the adults we encountered in public places who would hold the doors for us, even though they would be in a rush to get to their destination, Amanda taught patience. To all those who have ever perhaps even contemplated parking in a space designated for a person with special needs because they were in a hurry, and would “just be a few minutes”, I am sure that if they ever witnessed the process of me or Jim removing Amanda from our car, with wheelchair parts first, then assembly, then placement of the oxygen tank in its special holder, and finally Amanda herself, I feel as if these folks were shown the blessing they have in the use of their two legs and feet, and maybe a few extra feet of walking in the parking lot is exercise worth the effort. For the doctors, nurses, and all other medical personnel who met Amanda in the fragile beginning of her life and believed in their educated medical opinion that she did not have a chance of survival, they learned that not one medical exam can measure the strength of will or persistence of heart in any patient. For all of her teachers who had never even heard of Niemann-Pick before having Amanda as their student, they learned that even just a little laughter can drop a child to the floor, but that same child will keep getting up, and keep laughing, because life is to be enjoyed. For all of the St. Clement of Rome church community, she was a weekly reminder of God’s perfect love, for Amanda was all purity and goodness and sweetness. For Fr. Ralph, who felt that her liver transplant was our miracle from God, she showed him that God is generous with His miracles, as she pulled through many surgeries, episodes of respiratory distress, and managed to survive for ten years longer than doctors’s expectations with not one, but two terrible illnesses, both Niemann-Pick Type C and Cystic Fibrosis. For our family and friends, they saw that having children is not always dancing lessons and soccer practice, but sometimes it involves tube feedings, suctioning, and trips to the emergency room. Yet either way, children are God’s greatest gifts, and not to be taken for granted. The biggest lessons of all, however, were learned by us: Her mother, father, sister, and brother. We did not expect the journey we would be taking when Amanda was on the way. We were complacent with our little suburban life, and adding a third child to the mix was anticipated with not much revelry. When Amanda was born, however, we learned that life does not always turn out as expected. Adam and Chelsea learned that not all children come home from the hospital when the moms do. They also learned that all babies are cute, even with a nasogastric tube attached to their face. They learned that not all babies drink from a bottle or their mother’s breast; some actually require the help of a tube and large syringe. We all learned that sometimes a family has to be apart for awhile, but that distance should never tear the bond they share. Me and Jim learned that sometimes, sleepless nights are not just temporary, and that our circadian rhythms just have to adjust, perhaps with a little caffeine assistance. Me and Jim also had to learn how to become “un-registered” nurses and respiratory therapists, and that although we would never be financially re-imbursed for these skills, our rewards were in each day that our children were given to us. Chelsea has learned some of the cruelest lessons of all, losing both of her siblings, but she has been an exemplary student. She would read to her siblings, buy them things, watch movies with them, and never showed frustration when their physical needs usurped her time with us. She knows nothing but great love for all children, and these lessons will serve her well all through her life. Some people feel we have been cheated as parents, having two children taken from us at the age of ten. True, it was never our desire to outlive even one of our children, but we have realized the blessing in having been chosen to be parents at all, and particularly of the three wonderful children we were given. Amanda will be missed, as has her brother Adam been missed these past four and a half years, but our faith has taught us that she will live with us in spirit, and in our hearts, and through each other. We will see something of her in other children at times, and all we need to do is close our eyes, and her smiling face will be there for us. Jim and I wish to thank everyone who has been there for us and for our children. Our faith, our love, our family and friends, as well as the St. Clement community, have been our source of strength when we were not sure any was to be had. Through our losses, we have known many blessings. We pray that a part of Amanda will stay with each and everyone whom God has graced with knowing her. |
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