Hi childatheart, thanks so much for writing, I can relate to you in so many ways also.
My mother passed away suddenly when I was 12, never got to say goodbye. My father had bowel cancer which although ‘cured’ metastised into liver cancer years later. Nothing could be done, was given 6 weeks. I cared for him at home myself (whilst raising 4 kids under 5 as a single mum!). It was horrible watching him deteriote so quickly. I find comfort in the fact that he knew I was going to move back into my childhood house that he built and his grandchildren would be raised there. I feel his presence all around me -reminding me to fix the roof…
I think I was just running on stress adrenilin, it wasn’t until 9mths after his death that I had a breakdown and had to be hospitalized.
With my son, I started grieving the moment the doctor uttered the word ‘leukaemia’. within hours my son was in the operating theatre getting a central line in. I remember fainting when the procedure was being explained to me. Then all the chemo, total body radiation, fortnightly bone marrow biopsies, surgeries. all the meds and side effects, the gastronomy tube, the new trial miracle drugs, all the successes and setbacks, I have grieved every single moment – 10 years of wondering if he’s going to make it.
When we were told he needed a double lung transplant I had to come to terms with the fact that they would only last 5-8yrs max, but it was the ‘quality’ not quantity of life that mattered, hard to accept, but his lung function was at 20% so no other option.
I saw my son blossom, he could have a conversation without coughing, he got a job, had his first dates and was finally enjoying life.
He still needed the overnight feeds (only weighed 38kg) and had to take like 15 meds twice a day. He’d always been so diligent, never needed reminding – why oh why did he not tell anyone he’d skipped a few ?!. He thought he could catch up, but the rejection process could not be halted.
He didn’t mean for this to happen, I can’t be angry with him or the doctors, he got the best treatment, but I’m so sad he suffered so much for half of his short life, which was really only just beginning. The fact that this was a preventable accident is the hardest to bear.
I will never ‘move on’, my life has changed irrevocably, and ‘time won’t heal this wound’. It’s been 20 years since I lost my dad, I can’t tell you how many nights I cried out his name to help me in my distress over my son. I miss him. You are ‘orphaned’ like me, so you will always carry a heavy rock in your pocket, but I can tell you it get’s a little easier to carry xxx