I know I missed last week and I’m sorry for any worry I may have caused, we’ve just been busy with our move and picking out paint colours for Theo’s new bedroom. I’ll fill in the details of our transition later.
Theo has been having a decent week. He is still seizing but his seizures seem to be more adequately controlled by the new medication and his vomiting episodes have decreased slightly now that he’s receiving his pain medications subcutaneously rather than through his nasogastric tube. Unfortunately, we’ve had to increase his pain medication as his legs are starting to cause him increasing amounts of pain, particularly during dressing changes. We are still seeing low-grade fevers most days, which his doctor believes could be a sign of microaspiration.
In the beginning, I often found myself asking: why Theo? Why our family? I’ve since stopped asking myself questions without answers but have arrived at the following affirmations, making the previous questions irrelevant.
Theo is loved. We are strong and supported.
Unquestionably, our biggest source of support comes from someone who has humbly walked every step of this journey with us.
She was the first face I saw when we landed at McMaster after being air lifted from Timmins. She held me and prayed as we watched a team of doctors perform CPR on Theo that same night. At eight months pregnant, she drove an hour each way to visit Theo while he was at the hospital every day, bringing us food and comfort. When Theo stopped breathing back in April, she left work immediately and drove us to the hospital, staying by our sides well into the night. With an infant and a toddler, and running on little sleep, she comes over every day when we are without nursing coverage (and when Mark is away) to assist with dressing changes, help prepare Theo’s meds and allow me the opportunity to nap or leave the house for errands. I can do so because she knows every aspect of Theo’s illness including: medication times and dosages, seizure and fever frequency, when his coughing will be followed by vomiting and when he’s crying out because his stomach is bothering him from the constipating side effects of his medication.
She knows what to do on the days when I feel like my world is collapsing and just what to say when my words fail me. She messages me every single morning, without fail, asking how Theo’s night was and when she isn’t here helping, she finds the time to organize a fundraiser on Theo’s behalf. She is the epitome of compassion and selflessness.
Her profession as a nurse has been an invaluable asset to us but I know it can’t be easy for her to see her nephew suffer the way he does. To hold his leg during dressing changes as he screams in pain and she wipes the sweat from his tiny forehead. To watch his seizures increase in intensity and feel helpless against their powerful hold.
I have considered her a blessing in my life, long before Theo became ill. In fact, I’m not sure how I existed in this world before she came along. We are constantly mistaken as twins and we might as well have been because not only do we share the same thoughts but I’m convinced our hearts share the same beat. Which is why, although I struggle with a way to express how lost I’d be without her, and how blessed Theo is to have an Aunt like her, I know that she knows.
Today’s miracle is my sister who is dedicated to caring for others and whose compassionate heart beats stronger than anyone else I know.