Ashlyn Joy
Ashlyn Joy was our fourth child. After three children, my husband and I were pros at juggling babies and the flow of a full yet chaotic lifestyle. But celebration quickly turned into denial. At 6 months of age, we noticed that Ashlyn was not developing at a normal rate and was slow to hit developmental milestones compared to our other children. At age seven, it was obvious that our hopes for her to walk, talk and lead a normal life were not possible.
“I would never feel my daughter put her arms around me but her hospice team provided hugs and became an extension of her.”
Approaching the age of 19, Ashlyn no longer moved or responded to the environment around her. For years, Ashlyn was subjected to the most advanced medical testing available while her fragile body deteriorated. It was not until she was accepted in the Rare Genome Project through Harvard that we would find the answer. Unfortunately, we received the diagnosis seven months after she passed.
Ashlyn was eligible for hospice services long before we accepted the assistance. We always viewed hospice as the end and never wanted to take that path. Now we know that Ashlyn and our entire family needed her hospice team for support, reassurance and comfort. The nurse and social worker became part of our family and were always supportive as we made very difficult decisions. The part they played in the last months of our daughter’s life were instrumental in getting us through the inconceivable truth that Ashlyn would not always be with us.
One of the hardest parts of Ashlyn’s disease was the fact I would never feel my daughter put her arms around me and give me a big hug. But when I think about it, her hospice team provided hugs and became an extension of her. Please consider donating to the Pediatric Hospice and Palliative Care Program at Hospice of the Western Reserve. Your gift will help fund the $600,000 that it takes to care for the more than one hundred children served by this program each year. Your generosity ensures that the care team can continue to give hugs and spread the love and reassurance each family needs for their journey.
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