“Why aren’t more people speaking up?”
A peer recently asked this question on an active discussion board in response to the more recent news headlines. This somewhat simple question has complex and complicated answers for each of us. It also sparked my own reflections on how I’m contributing, whether it be sharing my voice online, volunteering, or continuing my own political activism. As I reflected on the ways I choose to speak up, I noticed that almost everyone I know is using their unique voice and passion to be of service to others. It also gave me the idea to spotlight the powerhouse women I know who are changing the world from where they are. People and purpose are part of the fuel helping each of us lead meaningful, and happy, lives. And, we all speak up in different ways.
This July, I will share stories of different paths to service, starting with my cousin Becky, and her family.
Some of us don’t choose how we will be of service – the path chooses us.
When Becky and her husband, Chris, welcomed their third son, Luke, into their family, they realized quickly that something wasn’t right. Luke was struggling to breathe, and the doctors couldn’t figure out what was going on. I remember getting updates from Becky’s mom that Chris and Becky were commuting between their New Jersey home to Children’s Hospital of Philadelphia, trying to find out what was happening and what they could do – for weeks. For weeks, they did a juggling act between home, hospital, work and rest that seemed just about impossible as an outsider. A few years later, Becky told me she just switched into one-day-at-a-time mode and was so glad her family and friends were close enough to help with everything at home that she and Chris just couldn’t get to.
Luke was eventually diagnosed with a rare disease: Congenital Central Hypoventilation Syndrome (CCHS). With only one person in 6.3 million being diagnoses with CCHS, ‘rare’ may be a bit of an understatement. CCHS is a condition where everything is great when Luke is awake – but he stops breathing when he is asleep. At just a month old, he had a tracheostomy and needed a ventilator any time he fell asleep. Imagine that situation for a newborn – you know, since newborns sleep the majority of the day!
It’s also important to point out that not only was Luke’s diagnosis a rare one, he is also one of the lucky ones. CCHS has a range of symptoms, and while Luke is able to lead a mostly “typical” life when awake, some CCHSers need to be on a ventilator around the clock, may have learning disabilities, seizures, neuroblastoma (a rare cancer), blue spells, cardiac pauses – and more.
“Sometimes those who give the most are the ones with the least to spare.”
― Mike McIntyre, The Kindness of Strangers
At a time when most of us might see success as making it through each day, one at a time, Becky and Chris started reaching out to help others. While it hadn’t even crossed my mind to think about the possible implications as my wife and I started our own families, they shared details with us (and my brother), so that we could be tested and prepared if the cause was something genetic (it is) or hereditary (it wasn’t). And then they went big: Becky stepped up and co-founded of the CCHS Foundation. Through funding research, connecting CCHS families to one another, raising awareness, and sharing her story, Becky is changing – and saving – lives.
I’ve known Becky my whole life. She always wanted to be a nurse and has always been a caregiver. As I’ve had the privilege to witness Becky and Chris’ journey, the word that always comes to mind is “grace”. In a situation when it would be completely justified to pull in and focus on her family, Becky chose to give to others. She is an advocate for the support and resources she wished she had. When I asked if I could write this and share her story, her response was that she did what any parent would do. I’m not sure that co-founding a foundation dedicated to medical research is what we’d each do in a similar situation, but I love that Becky thinks it is. She is speaking up for families who will find themselves with a newborn who needs additional care every time the fall asleep. An unexpected purpose found Becky, and Becky found people who she needed – and who needed her.
To learn more, please visit (and consider donating to) www.cchsnetwork.org.
“The purpose of life is not to be happy.
It is to be useful, to be honorable, to be compassionate,
to have it make some difference that you have lived and lived well.”
― Ralph Waldo Emerson