Yesterday, we returned to McMaster Children’s Hospital for a follow-up appointment with Theo’s pediatrician and plastic surgeon. Theo’s wounds are healing well but his digits are starting to auto-amputate and he required an assessment for amputation of his legs. His plastic surgeon is pleased with the regeneration of healthy tissue but believes that Theo is not strong enough to undergo the sedation required for surgery. Theo’s pediatrician also confirmed that Theo’s health has declined since his last visit – his breathing has become progressively more struggled, he is vomiting consistently, and he is now constantly dependent on oxygen. We have seen signs over the last few weeks, which we suspected would indicate that Theo hasn’t improved, but hearing our fears reaffirmed was devastating.
We’ve had several end of life discussions with Theo’s doctor now and I respect and appreciate his honest and straightforward approach. He has endeavored to ensure that we are prepared for the inevitable whenever that time comes. But how can you ever prepare yourself to say goodbye to your child? I once read that having a child is like having your heart walk outside your body. One day soon, I won’t just be burying my son, I’ll be burying my heart too.
I now know that Theo isn’t destined for life on this earth. His constant suffering reminds me of that daily but truthfully, I’m afraid. I’m afraid to say goodbye and I’m afraid to live without him. And I’m afraid of not knowing if I’ll still be able to hold him tomorrow…or the next day.
Life doesn’t change for us. We continue to take it one hour at a time and count our blessings for each additional day we get to spend with Theo. Theodore’s life is not about the happy ending, it’s about the story. The story of a beautiful, inspiring, little boy that has shown more strength and spirit than anyone else I know. And, I’m so proud to call this little boy my son.