Tomorrow marks one month since we first arrived at the Emergency Room in Timmins. One month since we’ve seen our son walk, smile and laugh. One month since life as we knew it has been forever changed.
It still doesn’t feel real some days. But our new reality is this: our perfect healthy son is now chronically ill with a significantly shortened life expectancy. If I’m honest, I’m still adjusting to the loss of my son as I knew him. He will never again run to me smiling after I return from work. I will never again hear him say Mama.
But, after being told on several occasions over the last month to say goodbye to him, I count my blessings every single day that I can still hold my baby in my arms.
We’ve been settled in Timmins now for a week and a half. When we were first transferred from McMaster Children’s Hospital back to Timmins, we were given a grave prognosis. Theodore would likely succumb to complications from his illness in the coming days to month. We were heading home to keep Theo comfortable and cherish his remaining time as a family.
Since we’ve arrived here, though, Theo has made some improvements. His lungs and heart are strong and his breathing has become less labored. He’s also managing his secretions better than when we left Mac. He receives physiotherapy daily and we’re noticing an increase in his range of motion and stronger control of his head. Theo is still on quite a bit of pain medication (due to the damage to his limbs) and a medication to help him relax. His digestion system seems to be working effectively which still surprises his doctors because it’s only been a few weeks since he was diagnosed with multiple organ failure.
My best friend, who is a Pediatric Nurse from Sick Kids in Vancouver has been with us in Timmins since we returned. She has been invaluable in suggesting new treatment and comfort strategies to try with Theo and has showed us how we can change and bathe Theo ourselves. She’s also helped us feel more comfortable holding him. She has spent the majority of her visit here with us at the hospital even spending a few nights with him sleeping in the hospital bed next to his. I can’t put into words how lucky I am to have her here with us during this time.
She is one of the many people who make up our support system both in Timmins and around the country. We have been overwhelmed with the amount of support we’ve received – prayers, donations, gift cards, frozen meals…the list is endless. We have felt so loved and haven’t faced one step of this difficult journey alone.