Darby’s Story
Once Upon a Time…
There was a little boy named Darby. And when he was born, all of the stars fell out of the sky, and one by one, we hung all of the stars back up together. I would tell Darby every night, I love you to the moon and back and more than all of the stars you helped us see.
Darby Jameson Rinke was born on March 25, 2020. Darby was born with a number of congenital abnormalities that were not apparent at birth. Throughout his short life, Darby was diagnosed with hypotonia, acid reflux, a laryngeal cleft, laryngomalacia, severe bronchomalacia, pulmonary hypertension, hypoxic respiratory failure, central apnea, severe encephalopathy, hypsarrhythmia which progressed to seizures, and cerebral palsy. Darby’s constellation of diagnoses never painted a picture of any particular syndrome, and we grew to accept that he was the way he was and that he was an absolute miracle.
During the peak of the COVID pandemic, we followed our son from Royal Oak Beaumont Hospital to Children’s Hospital in Detroit and finally to Mott Children’s Hospital in Ann Arbor on a seven-month journey that included several surgeries. On October 28, 2020, Darby was discharged home from the Stable Vent Unit at Mott with a tracheostomy, ventilator, and feeding tube to survive. With the help of the nurses and staff at First Day Homecare, we were able to care for our son and help him live comfortably in our home for the next two and a half years of his life.
Often special needs parents ask:
“Why Me?” … “Why My Child?”
The better question is:
“Why Not Me?”
Why Not Us?
Why not my husband and I? We were the truly lucky ones who got to be Darby’s parents. I ask people to be happy for us that we were able to give Darby the best life that we knew how to give him, and we loved every heart-breaking second of it. And we met so many wonderful people along the way. They say it takes a village, and Darby’s village was the most dedicated and loving group of family, friends, nurses, doctors, pharmacists, physical and occupational therapists, respiratory therapists, and social workers.
Darby passed away on March 22, 2023. Darby’s sweet smile and gentle soul touched the lives of everyone who was lucky enough to meet him. He brought our friends close and our families closer. He taught us the importance of just being present with the ones you love. He taught us how to be brave, to never give up, to never take anything for granted, and to love unconditionally.
There are some people who bring light into the world, and even after they have gone their light remains. Darby lit up our world, and his light will never go away.
Jessica Rinke (Darby’s Mom)
Donate to Darby’s Fund
Darby Rinke was First Day Homecare’s very first pediatric Private Duty Nursing patient admitted to services. Darby will forever hold a special place in our hearts. To honor his memory, we founded the Darby Rinke & First Day Homecare Vent Program Support Fund, which benefits infants and children cared for by the CS Mott Children’s Hospital Pediatric Ventilator Clinic. 100% of funds are used to directly support children like Darby, or to help fund research to discover better treatment options for infants and children on home ventilators. All donations make a difference! To donate to this fund, please click on the button below.