‘the will to live…’

Miracle challenge week 7 choice number 3 – write a story using the words ‘keeper, couple & time’

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Live this day as it was your last….that was our motto since we heard those deafening words – ‘there’s nothing more we can do’ on daffodil day 2015 (a major fundraising day in Australia for cancer research). I am in total awe of the way he handle the news that his life was coming to an end. He handled it the same way he did when he was first diagnosed 1 year previous to hearing this updated news. With fearless courage, bravery and strength. I am truly honoured with the relationship we had during that period of his life. Some days we didn’t even have to say anything, I just knew what he was thinking by his look. There were only a few occasions that I saw him breakdown & my heart nearly split in two. The first tears came when he was told that he wouldn’t be getting out of hospital for Christmas and that he’d only be given ‘gate leave’ for a few hours to share the magical time with family and friends in what was his last Christmas on Earth. Prayers were answered his blood levels increased dramatically overnight and the dr on duty had a change of heart and Jacob was granted a longer time to be at home. He joined us all at 10am for family fun and he returned to hospital at 5pm realising he was quite tired and the rain was settling in at home & the gathering was getting weary as well from an emotionally charged day. He was discharged to home on Boxing Day.

The second flood of tears fell as soon as the room cleared from all of the Drs, nurses, social workers after delivering us the most devastating news anyone wants to hear. I didn’t think my heart could break again as I don’t think it was repaired from the last time. It doesn’t break, it just has holes in it which lets the light in like a stained glass window. Letting more light in over time, it will never fully repair itself as that’s where I keep his memories locked away and where my love for him will continue to grow. I saw tears again when he spoke to one of his favourite nurses about planning his own funeral and planning his ‘celebration of life’ telling her that he still had his Catholic faith. Young people shouldn’t have to deal with such things.

If I can only live the rest of my life with his determination, strength and courage to face what comes my way I will be honoured. He taught us to cherish every day we’ve been blessed with and to tell loved ones we love them. He must have had so much fear in his thoughts but never once did he share them with me. I hope I was a positive influence as he was going through treatment as I only ever talked about him getting better and the plans for a brighter future when he was in remission. Even when he would ask me what I thought the pain he was experience was, if I said ‘I didn’t know’ he’d say ‘can’t you make something up.’ Every new pain he felt was unfortunately new sites of disease as he began to successfully read his body. Deep down he knew!

On the day he was first diagnosed he took it in his stride, mulled it over in his head and then said ‘ I’m hungry, let’s go get subway.’ That’s what he was like. Once we were home to spend the rest of his life we wrapped him up with love and breathed him in. One particular day, out of the blue he stated ‘I want to go to Mogo Zoo,’ so plans were put into action of a so called ‘bucket list’ of things he’d like to tick off. The palliative care team tried to warn us of the trips we’d plan saying his blood levels were too low, that he could pass away in the car. But he didn’t care, he wanted to put more living into the rest of his life. He wasn’t ready to meet his keeper yet, all his beautiful nurses in Sydney said he had way more living to do and not deny him of the blood products he needed to enjoy a few more days. Just a few more days to enjoy the things he wanted to do. Had it not been a public holiday in the days before he passed away, I’m sure he would have had a top up of blood products, but we didn’t want to bother the hospital during the time where limited staff on duty. With his bloods through his boots, platelets of 4 hb of 30 he enjoyed a fantastic day of sailing in a boat in a race where he came first. He sailed with a one armed, one legged inspirational man in a sailing boat designed for disabled people. What an odd couple! Jacob had to be lifted into the boat with a hoist as his disease in his spine had caused him to become a paraplegic with no power or feeling below his hips.

Family and friends gathered on the shore cheering them on in the race. His brother Ben and his cousin Paul followed them closely on a standup paddle board. We enjoyed a picnic with his favourite food & drinks, maybe not the healthiest of drink mind you, but who cares at that stage of your life – bbq chicken, fresh rolls and Coca Cola. This fantastic day was just 4 days before we lost him. This day was followed by another beautiful day just 3 days later. He had the opportunity to visit the beach in an amphibious wheelchair that could take him in the waves to enjoy the salt water one more time. A local news crew came along to capture the moment for us where he was presented with two medallions, one for him & one for me. I will share with you the extended footage of the beach outing with this piece of writing. Jacob passed away the very next day after the beach outing. His body was too weak to carry out anymore items on his bucket list. It was just his time, he couldn’t hang on to life anymore, he’d had enough, he was just too tired.

Cancer cannot silence courage. I will buy a tigers eye gemstone to personify Jacob’s courage, strength and personal power and say the affirmation – ‘I am courageous, strong and powerful’ and believe the words I can hear Jacob telling himself inside his head as he tried his best to beat Ewing’s Sarcoma. Courage doesn’t always roar like a tiger. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.” Courage isn’t having strength to go on – it is going on when you don’t have the strength. Love you my beautiful brown eyed boy x

7 thoughts on “‘the will to live…’

  1. It was very heart breaking to read to see the pics but at the same time very inspiring too. Thank you for sharing Jacob’s final days with us.
    And congrats for completing challenge no.3.
    And thank you for joining us with Week- 7 🙂

    Liked by 1 person

  2. well Debbie I just had to absorb your story of your beautiful boy before i could respond. I struggle to comprehend the agonising time from Jacob being diagnosed till the day he departed. But oh how you gave him so much love and amazing experiences during such difficult days. He certainly loved and protected you even while he dealt with such a cruel disease. So now you go on and live life for Jacob with his strength in your heart and your whole being .xo

    Liked by 1 person

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