by Ann
Utah, USA
In the early 1970s, our second son was born with a very rare and severe set of birth defects. The most they could tell us was a paragraph from a book. All it said was: “Most children with this disorder never live past a year.”
Matty was susceptible to many infections. He had seizures constantly, sometimes for six to eight hours at a time. Then, because he was so exhausted, he went into a semi-coma for about 24 hours. His metabolism slowed to the point he was even cool to the touch, and of course could not be fed. Why he never dehydrated and died during these times, we’ll never know.
Because of his seizures, it often took me four hours to get one ounce of formula down him. Then, seizing again, he threw it all up. He required care 24 hours a day. The doctor at the time was of no use. He was simply surprised my son was still alive each time I brought Matty in for an infection.
My wonderful mother helped me care for him for the first seven months, and then she suddenly had a stroke and was gone within four days.
In those days, there was no in-home nursing care. But within a week of my mother’s passing, the Relief Society president from our Mormon ward came to me and said, “We have chosen 10 ladies to help you care for Matty.”
For the next seventeen months, every other night I took him to one of their homes. They cared for him while I got a full night’s sleep. I picked him up in the morning and brought him home. If I failed to arrive at one of their homes on schedule, they called to ask, “Where is our Matty?”
At 23 months old, Matty quietly slipped away during a time when his metabolism was slowed down.
In his own way, Matty was a gift. He taught me things I would never have learned any other way. I believe he was here not for anything he had to accomplish, but for the things we needed to learn. He brought our friends and neighbors closer.
All who cared for him expressed that he brought a special feeling of peace to their home. Indeed, he was an incredible little child who radiated something celestial that all around him felt. These dear ladies and their families were always so kind and loving to us and to Matty. They were indispensable to us all.
It was the sort of trial one would never ask for nor want to go through again. But never would I trade the experience of having that special little spirit in our home, family, and community.
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What a story. I’m so glad to have read it. My niece was born with Down’s Syndrome and radiated the same “celestial” energy–she lifted my spirits when I couldn’t. Your perspective is inspirational. Thank you.
Its amazing hat you were able to take the light from this experience rather than fall into the dark depths of depression. Your outlook is inspiring. The Mormons are a pretty tight group of people. They will come together and do anything to help each other get through times like these. I am very sorry for your loss and at the same time I am happy that you were able to receive this as a gift and not a burden. God bless you, and thank you for shining your light into my little world.