In 2015, I began following a page on Facebook chronicling the lives of a family in Kansas. The Hartley Hooligans page is run by Gwen Hartley, mom to Cal, Claire, and Lola and wife to Scott. Like any modern mom, Gwen posts about the trials of family life, photos of their family in themed Halloween costumes, crazy days in their home, and medical issues.
Only in their home, medical issues can mean life or death.
The Hartley’s daughters, Claire and Lola, were both born with Asparagine Synthetase Deficiency. Asparagine synthetase deficiency is a condition that causes neurological problems in affected individuals starting soon after birth. Most people with this condition have an unusually small head size (microcephaly) that worsens over time due to loss (atrophy) of brain tissue. They also have severe developmental delay that affects both mental and motor skills (psychomotor delay). Affected individuals cannot sit, crawl, or walk and are unable to communicate verbally or nonverbally. The few affected children who achieve developmental milestones often lose these skills over time (developmental regression). People with this condition generally do not live past childhood.
But don’t tell Gwen Hartley that. Dr. William Dobyns, a child neurologist, made that mistake when Claire was born. He urged the Hartley's to create a DNR immediately, as in his professional opinion, Claire wouldn’t live past the age of one.
Gwen has sent him a letter each year on Claire’s birthday, detailing her amazing life and accomplishments.
Claire and Lola are differently abled. But this doesn’t stop them from living life. The Hartley family is one full of love and light. There are therapists who’ve become like family, guiding the girls through their days. Their constant companions, the family whippets Cash and Henry (and formerly Romeo who passed away in 2018) who love the girls with their whole hearts. The older brother, Cal, treats the girls with more love and respect than older brothers ever do.
October is Pregnancy and Infant Loss Month. Sadly, the Hartley’s are suffering doubly this month. On December 17, 2018, Claire passed away, presumably due to a catastrophic virus. She was 17 years old. She beat every odd thrown her way and survived 16 years longer than most doctors expected her to. She was a warrior and a fighter. Her spirit lives on in all of us who witnessed her battles.
On October 12, 2019, Lola fought her final battle. In Gwen’s own words, “Early this morning, with a full moon shining in our PICU window, our sweet Lola descended into the Heavens to be reunited with her big sister, Claire. Back-to-back viruses as well as other medical complications overcame her body that she was not able to overcome. She fought with everything in her to stay. She is quite literally the strongest human being we have ever known. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. We are completely devastated. She was an absolute warrior till her last breath and final heartbeat. We are going to miss her so incredibly much.”
I’ve lost a child, a child I was never able to spend more than five minutes with. And that loss almost broke me. I can not imagine spending 13 and 17 years, caring for another human being so completely, and then losing them. Claire and Lola required absolute care, similar to that of a newborn, 24/7, 365, for their entire lives. There were therapies, nurses, they were the world to their family.
Shattered doesn’t begin to describe what they must be feeling. I was in tears for hours upon hearing of both their deaths, and I just follow them on social media.
The loss of a child is something you never stop feeling. It’s a loss unlike any other. You’ve literally lost a piece of yourself.
When you go out in the world today, be a bit kinder, a bit softer, and smile at anyone you meet. You never know what kind of grief someone may still be processing.