The Doodlebug has quite the story!
Twins are very common in my family, so when I found out I was eating for three I wasn’t terribly shocked. Unprepared, yes. Shocked, no. My belly got HUGE and I was nicknamed “Deuce” by coworkers and friends (thanks, guys). One lazy Saturday morning I was cuddling in bed with my oldest daughter and husband when I went into labor. This couldn’t be happening, it was 10 weeks too early! We headed off to the hospital, not knowing what to expect. All I could think about was what my girls were going to wear home from the hospital. Really, that’s what I was worried about?!? Good Grief!
A short two hours later, Devyn and twin sister Dylan were born. They were both taken immediately to the Neonatal Intensive Care Unit. My wonderful husband followed them there and gathered all the information from the doctors while I “recovered.” Fairly quickly after delivery we were given “the news.” Dylan had respiratory distress syndrome and premature lungs, but was otherwise healthy. Devyn was diagnosed with Apert Syndrome, a genetic mutation causing facial deformities, fused fingers and toes, and many other congenital conditions. She was completely dependent on a ventilator for breathing and was eventually given a tracheostomy. She was also diagnosed with Hydrocephalus and has a ventricular-plural shunt.
So. Here we were; unprepared for twins, unprepared for early labor, and unprepared for a child with a disability. We immediately went into autopilot. Devyn was transferred to Yale New Haven Children’s Hospital Newborn Special Care Unit the next day, and Dylan was transferred there the following week after developing a bowl disorder. We began an 8 month trek of back and forth to the hospital to visit our precious girls, while still trying to maintain some sort of “normal” life for ourselves and our oldest daughter. Dylan recovered from her illnesses and came home from the hospital after a six week stay, but Devyn just really couldn’t get enough. I know that she loved her nurses, but 8 months, honestly!?!?
After Devyn was released from the hospital things really started to get busy! Appointments, therapy sessions, visits from her birth to three team, and adjusting to her real home were just the tip of the iceberg. She still battled illnesses, a compromised immune system, multiple surgeries, and not to mention regular old child development issues. She is one tough cookie! Throughout it all, though, we NEVER treated her like a “sick” child. We took her shopping, hiking, to the beach, to the amusement park, and even to the top of Mount Washington. She was going to have a normal life, no matter how many machines we had to drag around with us. Her life was going to be full. No matter what!
Very long story short, Devyn is now a thriving member of the family and her Kindergarten classroom. She loves music, her Girl Scout troop, her dogs, and her sisters. She is getting around the house with the use of a wheelchair, and zooming around in her shiny new walker. She loves pizza, pancakes, cold cuts, and milkshakes. She is a social butterfly and has friends wherever she goes. A word of caution, don’t tell her not to do something, because by George she will find a way to do it!
We may not be prepared for what tomorrow will hold, but whatever it may be, we will face it with courage, love and one another.
In the end, Devyn’s charm has and always will shine through.