Searching for my son
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Please welcome Lana as a new contributor today—her son Patrick died at eight months old of a rare genetic condition. Her three surviving children help her remember Patrick and ‘appreciate everyday beauty.’
—The Editors
From the moment Patrick was born I began to search for babies that were the same as him, to see what his future would be like. At night, I pored over the Internet, looking up every word his doctors had uttered during their brief bedside visit. My searches provided me with such an array of different outcomes that I was unable to determine which one would be his.
What will become of you, Paddy? What will you be like when you get older? Please don’t die.
As genetic testing began, I searched for children with specific genetic syndromes. Searching, reading, looking. I was always listening for a new word or phrase to investigate. Surely, there would be more children like him? There were so many cases that were a bit like him, but there was no specific group that matched him exactly, or that were even close enough.
As weeks and then months passed by, my searches changed as my son’s condition evolved. When once I was looking for children with ‘developmental delay’, I was now searching for children with ‘impairment’ and life-long medical issues. Genetic testing still had not found an answer. I hoped this was a good thing. Perhaps there is nothing wrong after all, and everyone is getting worried over nothing. In my heart though, I knew Patrick was not like my two other boys.
Why can’t I find you, Paddy?
After months of waiting, we finally had a genetic diagnosis. A single change in a gene meant that Patrick had a very rare condition that was often fatal. We continued to love him and moved forward. As hospital staff cared for him, they provided me with the skills needed to look after my child at home. I developed a rapport with the hospital staff. I saw them more than I saw my own family. These people weren’t necessarily my friends, but they had become my world. Then Patrick died.
After Patrick’s death, my world collapsed. I went from seeing his care team every day, to not at all. They looked after The Living Babies, and I had now been transferred to the Dead Baby Department. As wonderful as these new people were, I felt like an appointment in a calendar. I had lost the day-to-day banter of the ward. A person was now required to contact me on a certain day to ask pre-prepared questions about my feelings. They had never met my child, yet the ones that had, were now lost to me. My life was now static. I’d lost my people. My house was empty. My baby was dead.
I continued to search for Patrick after his death, and two years later I found a group for families with a child like mine.
Finally, I’ve found you Paddy. You are not alone.
With my heart pounding, I joined the group and devoured all of the stories on this forum. I shared Patrick’s entire journey with them, knowing that they would welcome me and appreciate my contribution. Many members of the group provided appropriate comments and condolences, but once this was complete, there was nothing. This group was again for people with living children and mine was the only one that was dead. I felt like an outsider, watching from a distance. Separated by death. I didn’t belong here. My search for meaning had left me empty.
It is now nearly three years since Patrick died in my arms at the hospital where he was born. My need to search has lessened as the weight of his death bears less heavily on me. I know where Patrick is. He is with me. He always will be.
Have you felt that ravenous need for community in loss, either specific to your child’s condition or in any other manner of shared experience? What has finding other parents like you contributed to your life after loss?