Melissa turns 20 next month. How is that possible?! She's been through too much in her two decades, but still smiling and enjoying life.
She started out with an ambulance ride to the nearest children's hospital with respiratory and other issues. While being whisked along the highway, Melissa gave the first indication of her stubbornness...uh, determination!...she very deliberately extubated the breathing tube from her throat! A month in the NICU, with tests and procedures, the doctors diagnosed her, along with four others in the NICU, with Pierre-Robin Syndrome. They assured us that she'd outgrow her problems except she would never be able to stick her tongue out (if only...that tongue is out most of the time), due to a small jaw. We were told to keep her prone in order to prevent her from swallowing her tongue!
Melissa went home with a monitor for heart rate and breathing, a ng-tube--nasogastric, a tube for formula that went through her nose and into her stomach, instructions and implement for retrieving her tongue should it fall back (never happened), and two very scared parents.
We all survived that first year; it really is the most difficult. I managed to shock myself and everyone else. You see, I have Cerebral Palsy. While I expected normal parenting to be challenging, I knew I could make adaptations. Having a medically fragile baby myself...well, everyone doubted my physical abilities, except for Melissa. Melissa never shied away from my tight shaky body, she just melded to me, held still, and let me do whatever it was (oh how I wish she still cooperated like that). The first time she pulled her ng-tube and we were alone, I decided to try to place it myself, before calling my husband to do it. He was trained, but I had just watched, at the hospital. I measured, and prepared, and put that tube right in. Checked for proper placement, and hot dang! I did it! From that time on, I was not only her mamma, but full-time caregiver.
Through therapies and specialists, we knew Melissa wasn't “outgrowing” her problems. Though she had genetic testing as an infant, she was retested and diagnosed at 4 years with a “subtelomeric deletion on the short arm of chromosome 1;” 1p36 Deletion Syndrome. Melissa was fortunate; her immune system slowly strengthened and she was medically quite stable. She walked independently in her environment just before turning five. Though she didn't (and doesn't) speak, Melissa understood quite a lot, and made her wishes known in her own ways!
At nine years old, we were caught off guard with Melissa developing epilepsy. Waking up at five in the morning because she fell from bed having her first grand mal seizure is not a good start to a day! Over the years meds have kept the seizures under control. At ten, Melissa had her spine fused due to scoliosis. It was a hard recovery; a month in hospital to get her walking again. She was great!
Just before turning 12, Melissa and I lost her dad. Some doubted her ability to understand, to grieve. I witnessed my child's profound loss, sadness, that needed not a single word. She wandered our home looking for him, taking her nap on my side of the bed, kissing his picture (to this day). You may wonder how we got past that pain. Love. Of each other. Of family. New love.
When Melissa was 13, she decided to eat! All those years, we offered her food. Occasionally she would eat a food or two, for a few days, but she would always stop. There wasn't a definitive reason why she couldn't eat by mouth. She had received a g-tube at six months, so I didn't have to keep putting the tube in her nose. I had come to the conclusion she would eat when or if she wanted, but probably not sustain herself with full-time eating. I love being wrong! She still doesn't drink enough, so water and meds go through the tube.
These days, Melissa focuses on gaining independence and having fun. Communication through signs and an iPad app with therapy. Socialization and physical exercise with horse therapy. Music therapy for attention, sensory, communication, and other purposes. Summer camp. We also enjoy our time with our 1p36 family. A conference. Multi-family get-togethers. Melissa loves to people watch, and appreciates being with those who truly understand, as do I.