~Shared by T. Compton
The message on her hand is one she carries in her heart.
Sara Hoey’s hand is covered in colorful letters, including her daughter’s favorite color – purple. In fact, every member of Sara’s family (and a large number of their friends) is sporting a similar message on the back of their hands: Hope 4 Jilly.
Jillian is her lively, hazel eyed, curly haired, much adored daughter. Gearing up for her second year of rookie softball, she’s an active first grader who loves music class, takes tap and jazz dance, makes her mom grin with the constant playing of Taylor Swift’s ‘Trouble’ on her iPod, and lives life each day with juvenile diabetes.
Strong in their support, family and friends have markered up their hands to celebrate “Hope for a Cure Day.”
“It brings awareness to finding hope to one day cure Type 1 Diabetes,” Sara said.
The Juvenile Diabetes Research Foundation, or JDRF, is hosting a 5K Walk to Cure Diabetes on June 1st, Moosic. To support Jillian’s team, please visit: http://www2.jdrf.org/site/TR?pg=team&fr_id=2172&team_id=78440
As a mom, Sara admits she worries about the disease. “You worry any time you are a parent. Being a mom of a Type-1 Diabetic child, the worry is intensified. I look at the clock and worry while she is in school that she is going to have a low (blood sugar level) and pass out or if she will have a low on the school bus, and there will be nobody able to take care of her. I worry at night that she is going to go unconscious in her sleep and that it will happen while we are sleeping. Both Brian (her husband) and myself take turns getting up each night at 2 a.m. to do a blood sugar check on her and make sure she is safe.”
What helps her cope? “I have a really great support system in my family who listen to me vent each day about the latest obstacle. I have a wonderful husband who is there to help 24/7, and we have faith in God who listens to our prayers to help keep our little girl safe each day,” Sara said.
Although she’s young, Sara says Jillian has a good understanding of diabetes. “Jillian understands a lot more than I think most 7-year-old children would grasp. She does her own blood sugar checks six to eight times a day, and we supervise, or the school nurse does it. We do her dosing and carb counting, but she understands what is good for her and what will make her blood sugar go high. She understands what she needs when she goes low,” Sara said.
“She takes a lot in stride and she is so strong!! However, she does get lows that are scary that leave her unable to think clearly or function for some time. And that is upsetting as a parent to see her having to miss out on things due to her being low.
“I get overwhelmed a lot when Jillian is sick. A simple stomach bug can land her in the ER on IV. Colds and flus promote high and low blood sugars. I often get very stressed when she is sick. Also, when she is growing, her blood sugars go out of whack,” Sara said.
Are there many visits and long trips to the hospital? “When she was diagnosed she was admitted there for a week. We went back for educational courses on how to take care of her as well as when we transitioned her to the insulin pump. We go to Chilldren’s Hospital of Philadelphia every three months for her regular check-ups,” she said.
How do you turn those trips into something fun instead of something to be dreaded? “We started a fun tradition of going to Build-A-Bear when we go to CHOP to put a fun spin on the trips. Now she looks forward to those trips a little bit more,” Sara explained.
How has the rest of the family adapted to Jillian’s diagnosis? “Her little brother (Brett) had a tough time initially dealing with all of the attention Jillian was getting. He started to act out a bit, but we made it a point to spend time with him one-on-one as well, and he seems to have adjusted very well. He looks out for his sister now. He tells her when something is going to ‘give her high blood sugar,'” Sara said.
Does everyone go out of their way to make her feel comfortable? “Everyone in the family has gone out of their way to make sure she knows she is loved. We are always telling her how strong she is each day and how incredibly proud we are of her.”
Is it a learning curve? “Taking care of Jillian is a huge learning curve. Everything from knowing signs of highs/lows, carb counting, insulin dosing and using her pump is invloved. There aren’t many times that she is not with myself, Brian or the school nurse due to those factors,” Sara explained.
What is Sara’s hope for everyone with diabetes? “My hope is that there will one day be a cure. That the 6-8 checks a day, 3-4 painful site changes, and scary lows and highs will one day be no longer. If not a cure, my hope is that more and more technological advancements (like Jillian’s insulin pump) will keep coming out.”
What would she tell someone whose child has just been diagnosed? “I would tell them to take a deep breath. Right now everything is going through their minds at once. Try to take everything one day at a time. Some days will be harder than others, and you will constantly be comparing your life from before diagnosis to now. Things will get easier in the sense that you will get used to your new routine and lifestyle, but it will all take time,” she said.
Sara and her husband work at Woodloch Pines Resort, where Sara is employed in the Reservation’s Department, and her husband is Facilities Manager.