We picked the name Bearon to give our son a name that means “Young Warrior”, with the plan to nickname him Bear.
My husband and I had so many dreams for him and spent our nights lying in bed chatting about what it would be like having a boy. All signs pointed to a very healthy baby boy.
When Bear came out screaming and the doctor put him straight on my chest, I cried tears of joy. The first thing I remember doing was grabbing his hand to count his fingers and toes – a ritual I did with my firstborn daughter as well.
But Bear’s middle, ring and pinky fingers would not separate and I actually thought they were stuck together because he had not yet been cleaned. That’s when the whole vibe in the room changed.
My husband and I were devastated to see that both hands and feet had the same deformities and had a rush of anxiety thinking of what else might be wrong.
The doctors examined Bear and relief flooded over me hearing the words, “He is completely healthy and it’s only a cosmetic issue.”
I felt so protective of Bear, thinking it would be hard for others to see past his hands, and spent the next months finding comfort in the affirmation of how healthy I was told he is.
Bear quickly grew to be a huge baby and was so content that I thought he was just lazy when it came to physical developments. After 8 easy months with Bear, I dreaded the looming hand surgery that would subject him to have both hands and arms fully casted for 3 weeks.
A group of women that I did a bible study with had our last meeting right before the first surgery. We discussed the hymnal ‘Abide with Me’ and I bawled that night, which was unusual because I’m not much of a crier.
I told them that I felt the sting of death when thinking about the surgery and I didn’t know why, since Bear’s surgery was just an outpatient surgery with very low risk.
Well, it soon made sense. Bear’s first surgery was December 9th and he had anesthesia complications. We were referred to an electrophysiologist who delivered the devastating news that our son has an extremely rare disease called Timothy syndrome with a life expectancy of 2.5 years.
The next months were so hard with more surgeries and emergency hospitalisations that I asked God to take his life early before I would get too attached and before his big sister would be able to remember him and the tragedy.
Bear is now 4.5 years old and I can’t imagine life without my young warrior. I wouldn’t change a thing because the disease has moulded him into the awesome kid he is.
It seems appropriate to end this story with the last thing Bear wants to tell us every night before bed: “Dinosaurs, snakes and squirrels.”