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Caregiver Stories: Meet Michael and Lilly

Posted by Brianna Maguire on May 14th 2020

Lilly was born at 26 weeks, weighing just one pound, seven ounces. Because of her premature birth, she experienced a number of challenges. Doctors placed a G-tube for her feeding, and it became clear that she’d rely on incontinence supplies for a long time.

After her birth, she was rushed to Vanderbilt Children’s Hospital, where she faced and overcame challenge after challenge. After six full months, Lilly’s mother was told she could finally take her daughter home - on Mother’s Day!

Caregiver: Michael, a loving husband and father

 

Caring for: Lilly, his daughter

Suggestion for other caregivers: The reward system works great! Lilly is much more willing to achieve goals if Michael and his wife set rewards for her.

A Mother's Day Gift

Lilly was born at 26 weeks, weighing just one pound, seven ounces. Because of her premature birth, she experienced a number of challenges. Doctors placed a G-tube for her feeding, and it became clear that she’d rely on incontinence supplies for a long time.

After her birth, she was rushed to Vanderbilt Children’s Hospital, where she faced and overcame challenge after challenge. After six full months, Lilly’s mother was told she could finally take her daughter home - on Mother’s Day!

Meeting Michael

In July of 2013, Lilly’s mother met Michael, the man who would become her husband and Lilly’s father. After dating for a while, they decided it was time for Michael and Lilly to meet.

Michael met Lilly and her mom down by a river where they could watch the sunset together. At first, he was nervous; he knew that Lilly was sweet, but she didn’t take well to strangers. But when Lilly arrived, she wasn’t bashful or shy—she stretched out her arms so Michael could pick her up. It was like she already knew he was going to be her father.

Three years ago, Michael and Lilly’s mom married, and one year ago, he officially adopted Lilly.

Bubbles & Car Rides

Lilly is now a beautiful, outgoing 10-year-old who lights up her parents’ lives. She attends school, is extremely outgoing, and adores her family. Some of her favorite things are her iPad, and playing with bubbles. She’ll also never pass up a good car ride!

She has both autism and cerebral palsy, and requires constant care from her parents, who have taken the challenges in stride.

Sacrificing for family

Despite the love Michael and his wife have for their daughter, there are many hurdles in front of them. Lilly is still using her G-tube and incontinence supplies, and her mother bathes her. She doesn’t like showerheads, and she really doesn’t like loud noises.

Lilly requires 24-hour care, and both of her parents have to work. That means Michael is often forced to take the night shift so he can be available for his daughter during the day.

Financially, caregiving has also been a struggle. Because Lilly does not currently qualify for Medicaid, the family’s private insurance requires them to pay out of pocket for many of the supplies she needs. While Michael doesn’t mind spending money to care for his daughter, it often forces the family to sacrifice activities like traveling or enjoying time outside the house.

But through it all, Michael knows that it's worth it. “The very best part is seeing her accomplishments,” he said. “Seeing how much she grows in life, and how much joy she brings to everyone around her.”


We’d love to hear your caregiver story! Please reach out to us if you want to share at support@carewell.com or 855-855-1666.

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