Once upon a time there were two summer camp sweethearts. They had a beautiful two-year-old daughter and were expecting twin girls at the end of the summer. One cozy Saturday morning everyone was cuddling in bed when, SURPRISE, it was time for the twins to be born: 10 weeks early. After all the hullabaloo of labor and delivery, there were two beautiful newborn girls laying in isolettes in the Neonatal Intensive Care Unit. One twin, was small and weak but with an Irish temper that got her breathing on her own within hours. The other twin, the doctors told those high-school sweethearts, had a rare genetic disorder, was unable to breathe on her own, had a brain hemorrhage, and would be emergency transported to a bigger hospital with equipment that would better serve her needs. That was the beginning of an 8 month journey, that would turn into a 5 year journey, and would become a life long journey. The little family was back and forth, back and forth, to and from the hospital to spend time with and learn to take care of their daughters. When tiny Twin B was finally able to come home, she had to leave her sister behind at the hospital in the care of the amazing nurses and doctors. Then, the little family continued trip after trip to the hospital to help Twin A get to know her Mommy, Daddy, and sisters. There were countless miles on the mini-van, an unknown number of stops at drive-thrus and coffee shops, daily parking rates that were through the roof, and immeasurable emotional costs all adding up without anyone taking notice. All throughout this time, though, the little girl with so many challenges was smiling at her nurses, trying her best to grow and learn and move, and bringing a smile to the faces of anyone who came into her hospital room. The community rallied around this little family lending prayers, support, ideas, and time. Everyone was drawn in by the charm of the little girl. This smile, determination, and charm are what called her parents to lend a hand and a shoulder to other families in similar situations.
In our estimation it is $250.00 in non-medical expenses such as gas, food, and parking every time a child is in-patient for a three day stay. Through our “Charm Chest” program we provide gas cards, food cards/vouchers, and parking vouchers to military families at Yale New Haven Children’s Hospital.
Our website is the platform that we use to Empower caregivers of children with special needs. On the site is a blog and a resources section that will provide answers to questions and ideas that we wish we had when we first started this journey.
By meeting with members of the community and by partnering with organizations like Navy Marine Corps Relief Society, Fleet and Family Support Center, the Naval Branch Health Clinic, and the Exceptional Family Member program we hope to Rally the community around all families with children experiencing extended and frequent hospital stays.
The story has just begun for our little family and who knows where the journey will take them, but along the way they have learned that bringing a little charm to others is the surest way to live Happily Ever After.