Special Moms of Special Kids
This time of year, we celebrate all mothers. But some, perhaps, deserve a little extra attention. Among those are two local moms who, as caretakers for their chronically ill children, know more than most of us how to smile through pain.
“In the last two years, Charles has spent more than 120 days in the hospital,” Geraldine Bliss said about her 11-year-old son. Charles has a rare genetic condition called Phelan-McDermid Syndrome. The diagnosis came at the age of 7. It would be just one chapter in a special-needs saga that began years earlier with the discovery that Charles was challenged with autism.
At the age of 8, another condition would emerge to torment her little boy, an epileptic-seizure disorder so severe that a protective helmet is a life-preserving necessity for most of his waking hours.
“He used to have a hundred seizures per day. Now he has about 10-20 on average,” explained Geraldine. “We give him a cocktail of four different anti-epilepsy medications several times a day. He also has an electrical conduction problem with his heart, which gives him a much greater risk of sudden death.”
Some families, desperate for elusive healing, would justifiably respond with anger, bitterness or fatigue-driven resentment.
Not this family. Or this mom.
Geraldine refuses to give in. She fights back by crafting a household that her Bunker Hill neighbors describe as “loving and enchanted with a welcoming sense of comfort and warmth.”
“With all the challenges she lives with on a daily basis Geraldine is always calm, full of life and never complains. She is always genuinely interested in what is going on in our lives,” said neighbor Suzie Gragg.
“I have seen her unyielding grace, patience and dedication with their unending trials. They manage to run a successful family, have a loving marriage, and are also raising a thriving 9-year-old boy, Nathan,” said neighbor Kelly Madden.
Geraldine has taken on a new role as chair of the Phelan-McDermid Syndrome Foundation Research Support Committee, which hopes to accelerate research about the syndrome.
“Despite all of the complications, Charles has retained a joy that seems incompatible with the suffering he has endured,” said Geraldine. “Every day his smile and great big dimples tell me he wants to live life joyfully.”
Monica Hampton knows all too well the demands of caring for a child rendered fragile by a disability. Her 8-year-old son Jake has a rare disorder called Hunter syndrome (MPS II). Children with MPS II are missing an important enzyme that helps break down a specific molecule inside the body. This causes progressive damage to many body systems, numerous health problems and can result in a significantly shortened life span. Jake has limited speech and other severe medical complications due to the effects of MPS II.
“Jake tripped the other day, and the whole day I was paranoid. What if he actually hurt his neck and there’s internal swelling and he can’t breathe at night. Your mind really runs amuck,” said Monica, who, with husband Wallis, also is raising 5-year-old twin girls.
“It’s exhausting, but it’s no longer horrible. Before, it was so painful to look at your child and think of them passing away. Now I focus on making sure he is the happiest kid in the world,” said Monica.
In the most severe cases of Hunter MPS II, life span can be limited to 8-13 years. Four years ago, Jake started to undergo weekly five-hour enzyme infusions, which Monica believes has helped.
Friends of the Hamptons admire how the family handles its situation.
“Despite the relentless stress of being a special-needs and twins family, Monica has an infectious happiness that makes you feel good anytime you are around her. To speak with her, you hardly know the struggles they face on a daily basis,” said neighbor Crystal Williams.
“The whole neighborhood has been so helpful and friendly,” said Monica. “We have understanding and supportive neighbors, from West University’s emergency medical staff, who have helped Jake numerous times, to the library staff who have welcomed Jake and even once defended him when a patron complained about Jake’s behavior.”
She admits to staving off ever-present fear with humor.
“When Jake was about 6 months old we thought he had asthma and we were all sad. Then we found out that Jake was losing his hearing. Every once in a while my husband and I will say, ‘Oh, we just want that deaf, asthmatic kid,’ where before that felt like such a trauma,” Monica said with a smile.
Both Monica and Geraldine are on journeys that include a lot of unknowns. But their job title as Mom is certain, and their love, they hope, is where the healing begins.
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