Hospital stays were often and frequent with my daughter Lydia, who at just five months, was diagnosed with a rare genetic syndrome. So rare, that at the beginning, it didn’t even have a name. Now, almost 10 years later the amount of documented cases has grown from 50 to over 400 and acquired a name—Kleefstra Syndrome.
With already one typical child, venturing the world of special needs was both scary and rewarding. It was a territory we had never ventured, much less been aware of. However, we knew doing nothing wouldn’t help her, so we jumped right in and made sure she had all the services and medical help she needed to be the best she could be.
Of course, her years came with many health challenges. Lydia’s life was riddled with specialists, ambulance rides, seizures, specialists, milestones, therapy, and doctor appointments. Her syndrome left her with the mentality of a one-year-old, and we took care of all of her activities of daily living.
We learned to enjoy the varied healthy days she encountered, and take the unhealthy in stride. In 2013 Lydia was diagnosed with a rare, subclinical epilepsy. The physician that entered the room the morning after her EEG delivered the news in a sobering way. We spent countless hours with the neurologist and neurosurgeons, who offered guidance and potential next steps.
However, nothing during our special needs journey would prepare us for how life would drastically change for us. On May 11, 2014, coincidentally Mother’s Day, my husband opened Lydia’s bedroom door to get her up only to find her face down dead in her bed. Without too much detail, we believe Lydia succumbed to her rare epilepsy, having passed in her sleep—the time when the seizures occurred.
The Grief Journey
No one is ever ready for what we encountered that morning. I was four hours away with my own mother, and upon receiving the news fell into her arms on the bathroom floor of our B&B. Sobbing uncontrollably, I couldn’t believe the child I poured my heart and soul into was now gone. How could this happen? We did everything we could in the seven years she was with us.
Why now? Why ever?
My two boys were present that day as well. At the time, ages nine and three and a half, they heard the blood curdling screams from my husband that morning. Playing quietly, they ran and hid behind the couch as police, EMTs, and family rushed in to try to help. My youngest a year later recalled the entire day, including asking me, “Why was Daddy screaming, Mommy?”
Immediately, I felt the purpose of my being drain out of my heart and soul. I went from living and breathing my special needs child to…quiet. Left without emails from therapists, no IEPs to comb over. No school updates or meetings. No wheelchairs or special equipment. No doctor appointments. NOTHING. The quiet, the lack of everyday tasks was deafening.
Who am I? Who are we now?
The grief journey is also something I never expected nor planned. It is uncharted territory I never wish on another parent, marriage, or family. After so many years of working day and night to keep my special child alive, the feelings of guilt that I didn’t do enough riddle my thoughts almost daily.
The emotions also hit each of us differently and at different times. My husband suffered PTSD moments for many months after her death. My oldest rarely speaks of her with us, pointing out that we usually end up in tears. My youngest wonders if we were to bury him, would he also go to heaven? Or you’ll find him asking Google if angels can hear him from heaven. As a “fixer,” I try to foster each of my family’s feelings while trying to bury my own. The thought of thinking about how much I miss her and what she brought to our lives is often too much to face.
And while almost three years later we continue to work through this new journey, we are thankful for what she brought to our lives. Never uttering a word, Lydia lived and breathed inspiration. Fighting for each milestone. Her smile—an instant reminder of what mattered in life. Her laugh so infectious you couldn’t help but forget any troubles of the day. And her constant challenges humbling and educating.
She was the epitome of perfection in an imperfect way. I’m convinced we will find purpose in this new life—somehow I have a feeling her work is not done here.