Eight years, eight light-years

Eight years. It’s hard to believe that Isla would be in second grade this year. It’s hard to imagine how different her life would have been, now that we can gauge what “normal” looks like with her two healthy brothers.

As we set up for her birthday celebration this morning, we found an old medication and tracking log from the six days we were out of the hospital. At five months old, her daily routine was dictated not by eating, napping, and playing, but by her rigorous medicine and strict feeding schedule. Medicine was required around the clock, every 2-3 hours. Nutrition was administered with love, but she wasn’t able to happily nurse and comically spit out baby food.

It’s hard to imagine the difficulties she would have encountered to this point, going in and out of doctor’s offices, having surgeries, passing milestones while potentially hooked to IVs or on heavy sedatives. When I try to imagine what it would have been for her during the COVID-19 pandemic, my heart cracks open, but then is filled with a river of gratitude. I despair over not being able to hold her, watch her play with her brothers and laugh at silly things with us - but I’m grateful she was spared from the pains and difficulties her body would have given her.

After several years I’ve grown into my deep belief that her soul is free, that I’ll find her after I no longer need my body anymore. Holding her life and her memory in that way takes away some of the bite of pain, puts it on a star-filled timescale, and makes the loss feel less personal and more shared by all those who loved her, and all those who never got a chance to meet her. Her birthday celebration this morning was filled with joy - Lorenzo and Leo squeaking with happiness at the contents of their “party bags”, chocolate on everyone’s faces, 2-year-old Leo trying to blow out her candles, watching movies of her, and listening to Lorenzo’s enthusiastic commentary on how tiny her socks were and how cute she was. A long hug with Dan, a moment of love before rushing off to work and virtual kindergarten and everyday life.

Time seems to stand still….it’s been eight years on earth, eight light-years in eternity. Forever missing and loving our sweet girl.