Friday, June 4, 2021

Celebrating the important stuff

Donovan was diagnosed with Noonan Syndrome when he was just five months old. His gastroenterologist heard a heart murmur, which caused her to refer us to a cardiologist. She diagnosed his pulmonary valve stenosis. Since 60 percent of people with this heart defect also have Noonan Syndrome, the cardiologist referred us to a geneticist, who made the ultimate genetic diagnosis. 

Noonan Syndrome is a genetic disorder caused by one of several mutations. Our son's mutation is of the PTPN11 gene. NS is a multi-system disorder with an estimated prevalence of 1 in 1,000 – 2,500 births. In Donovan's case, he has a bleeding (platelet function) disorder, the above mentioned congenital heart defect (which doctors addressed a couple of years ago via a balloon angioplasty), feeding and gastrointestinal issues (Celiac disease), ptosis of his right eye, low-set ears, waning small stature (for which he takes daily injections of growth hormones, that are working really, really well), and ADHD. Some (although not our son) also have learning disabilities.

Donovan's diagnosis was a gut punch for my wife and me; we had no idea what life would hold for him.

This was Donovan last Friday, holding his 6th Grade Core Value Award for Scholarship.

My kids' school subscribes to a set of four key shared Core Values:
We dedicate ourselves to helping one another create a community that recognizes every individual's abilities and aspirations for earning and giving respect, developing an inner sense of integrity, appreciating the values of nurturing scholarship appropriate for each developmental stage of learning, and understanding what constitutes doing one's personal best in attending to the challenges of each day.

One of his teachers told us that everyone thinks that the Scholarship award goes to the student with the highest grades. The faculty decided to give this year's award to Donovan in recognition of his hard work and steady improvement throughout the year, and further to provide him a boost of confidence going into 7th grade.

I don't think I've ever been more proud as a parent, and God knows my allergy-soaked eyes didn't need the extra water. So today, I'd like to celebrate those among us who haven't necessarily had the easiest go of it in life, but nevertheless persevere, give their best each and every day, and don't complain about it or let it define them. I'm certain you have an employee or two who fall into this category. Please celebrate them along with me.