choices

As you all know this blog started as an SMS just updating Bede’s physical condition. As it has grown I occasionally feel compelled to venture outside the scope. This post does just that.

Bede's first chemo, Bede laughs in the face of cancer.

Bede’s first chemo, Bede laughs in the face of cancer.

A while a go a comment was left on the blog that wasn’t approved.

It spoke of all the torture Roy and I were putting Bede through and the author said she hoped we would do the right thing soon.

Those of you that know us know it would take a bit more than some thoughtless words from a stranger to upset Roy and I or even to disturb our perspective. The comment did get me thinking.

We are at a stage of Bede’s treatment that at any time if Roy and I say it’s time to call it quits the doctors will support that. We have the ‘choice’.

It’s a funny concept that choice. I used to be lucky and naive enough to think people in situations like this had choices. That there would be value judgements, choices, to be made along the way. Most of all I thought there would be a choice to say ok Bede has had enough. That at some point it would be a matter of just gently letting him drift off. What a fairy tale that belief was.

In a treatment sense we have no real choices. It seems to me most of the families on this ward have no real choice. Most are fighting for their children’s life. We have the added responsibility of fighting for the quality of his death.

If 2 weeks ago we had chosen not to proceed with the treatment the tumour would have kept growing at the rate it was.

Bede was in excruciating pain. He would have had a horrifying death.

Because we went ahead it seems we may have thwarted some of the tumors growth and Bede’s pain is subsiding but he has needed blood transfusions, and has had infections and is just generally feeling pretty lousy after chemo but the treatment may buy him some good quality time at home playing with his brother and possibly a much less painful death. Prolonging his life prolongs his illness. There is no perfectly happy choice there.

We fight for him to have a better day but sometimes even those are rough, it is still the lesser of two troubles.

People may hold up this translucent illusion of choice in the hope of alleviating some sense of powerlessness but it is ineffective and unreal, that is not reality. Roy and I have no choices but a deep responsibility to honour Bede and all of his experiences whether that be life or death or the day to day struggles.

Tonight I met a beautiful young and wise Iranian woman. She said in a beautifully soft voice that there’s a saying that roughly translates to “God gives the hardest soldiers the hardest things” and she embraced me and kissed me. People tell you a lot of sayings when your child is diagnosed with cancer but that one really resonated with me. Perhaps it was the coarseness of the words mixed with the tender way she delivered them. We are strong enough to guide him through  and soft enough to embrace every moment with him.

We may not have real treatment choices, we may be powerless in the direction our lives take but we are dealing with a profound little boy. Filled with light and substance. That alone empowers us to make life choices. We choose to face each obstacle with love and joy and thankfulness. We choose to sing to him and smile and cherish him. We choose to make his life loving even when it can not be lovely. We choose the fullness of life for as long as we are gifted with it.

We would both be sorry to think that any of you out there thought we were putting Bede through the trauma of childhood cancer just to satiate our own selfish needs to have him here. There are no real choices except the choice to love him and shower him with as much joy as we can muster. I assure you we do this.

This is Bede’s life and it is actually not torturous. He knows no different, he grieves no loss and is present in every moment. He leaves the horrible moments behind in the blink of an eye and happily loses himself in his Mum’s smile. There is a lot to be learnt there. Perhaps it is Bede who has the real choices. The choice of how he lives his life and there is a lot that can be learnt from the decisions he makes.

26 thoughts on “choices

  1. Surely anyone can see,you deeply love Bede,no self gratification,everything done to make his life as pain free and comfortable as humanly possible.your strength and love shine like a beacon.you have my admiration.

  2. It is really sad how someone who has no idea of your feelings in this situation, felt they had the right to pass judgement on you and your husband. That they assume to know your innermost motivations and feelings. All you have asked is for people to surround your beautiful Bede with positivity and love, to blanket him in the warmth that it brings. Your selflessness in giving your child a voice and the confidence he must have in your incredible love and commitment to his living memory, is more than most children receive in a lifetime. Thank you for sharing your incredible Bede with us and let those that feel they have the right to judge take a good look in the mirror. Xo

  3. The enormity of what you are experiencing is incomparable. I find it hard to make time for people that offer up opinions without a shred of knowledge, empathy or understanding. I think you and Roy have made admirable, courageous decisions. I think you have given Bede a chance to live longer, given him everything you absolutely could to help him in this fight. I think the love you have for Bede is infinite and that your choice to fight is without a doubt rooted in this love.

  4. Well said…While facing things we can’t even imagine you retain your dignity and honesty and Bede is as bright and shining as ever xx

  5. It amazes me how people can be so judgemental. As I held my baby girl earlier who is just a couple of days older than Bebe, I know I would do anything I had to if I were in your shoes. I have been through cancer with my son, and it is not something we chose but we have to do the best we can and make the decisions that no parent should have to make. Stay strong, you are doing such a beautiful job and are showing Bede as much as love as you possibly can.

  6. People who often make comments like this have no idea at all.
    Completely different but when my daughter was premature the only thing I got to do was love her, express, choose her bed linen and her outfit for the day. Not big choices but they were still choices. I don’t often say this to people but one of the only things you get to choose to do medically for your baby in my situation was to turn off the machine. Everything else you are just told what is going on because you have no idea how to save their life? You are putting all your trust in the Dr and Nurses to do that. I started a business that sold premature baby clothing after our experience as it was my only choice I got to really make in the NICU. I learnt in NICU to NEVER judge a persons choices in these situations as you seriously have NO idea what it is like. All you can do is love your baby and enjoy the time you have. I hope that for you and Bede and Roy that the tumour reacts differently to what the Drs expect because miracles do happen. He’s still with you right now and that’s a miracle in itself from what they were telling you.
    Anyway don’t let the haters get to you, they don’t understand. Hell I don’t understand but I definitely don’t judge you. Bede is lucky to have an amazing Mum and Dad xx

  7. I would like to quote Winston Churchill: “You ask, What is our aim? I can answer with one word: Victory – victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.”. You shall never surrender to Bede’s enemy. Keep faith, we do!

  8. Some people choose to live in their own bubble, oblivious to the world that is childhood cancer. It’s nice there, it’s safe, and it’d be nice if everyone got to live in that bubble, but sadly we can’t and we must face reality.
    You are doing everything you need to as parents to your gorgeous, captivating boy. Although I feel you already know that 😉 Sending light and positive thoughts your way- from a past 3b mum xo

  9. I think you,hubby&Bede are amazing! Please don’t listen to people’s negative comments, they are not you&dont empathise with what you all are going through. Bede gives me hope, a little baby boy I have never met. Enjoy every moment good & bad. And I love the quote, hope you find some peace in that. Take care.

  10. Issy, I too think your doing a great job. Bede is so incredible growing from strength to strengh each day. I too am fighting tge battle with my son. He was giving less than 10% change of survival when I brought him in, roll on 18 months later and although been to he’ll and back his here with me and growing stronger everyday. Some people have NO IDEA., unless you have walking in the shoes of a childhood cancer don’t judge, be thankful you never have and praise the Lord you never will. Xxx much love, prayers strength and positive vibes- from another 3B mum. Xxxx

  11. Isabell I’m sure that the knowledge that so many people are praying for Bede is a great comfort for you and Roy. God will help you in the choices you make. God bless Deacon Paul.

  12. Perfectly written.. My heart is broken for you all that this has happened to Bede- but I’m in awe of the grace and strength you all fight with. No one has the right to comment on how you proceed in this journey.. But for what it’s worth: I could not think of anyone who would be a better mum to Bede xx

  13. Issy,
    Your courage, your faith, your love and trust in Gods planned journey for you and Bede is an inspiration to me everyday. Bede is a child of God, you honour him everyday with your love.
    I pray the uninformed and faithless glean some grace and faith from your world. God Bless us all.
    (ex OLOG mum)

  14. You inspire me Isabella! May God bless you as you bless your little boy. I love your words. “We choose to sing to him and smile and cherish him. We choose to make his life loving even when it can not be lovely. We choose the fullness of life for as long as we are gifted with it.” Keep loving, keep choosing, keep smiling and keep blessing him. Tony

  15. you are all so courageous in all the decisions you have had to make and I, like 99.9% of everyone who leaves a comment, applaud Roy, you and Bede.

  16. I could never think you would keep Bede here just for you. He is a little boy and I really believe he expresss in his own ways he is not ready to stop fighting. He wants to give his life a chance like he somehow understands that your aiming for better times ahead.

  17. Beautiful Is,
    Bede is so strong and brave and amazing, but how could he not be with such an amazing family?
    Sending love and strength xoxox

  18. “Some people choose to live by complaining. Other people choose to live”.
    Every time Bede smiles, he says “Mum, we made the right choice, Thank You!”

  19. Issy and Roy you are the bravest parents I know.Only those who have been in your situation know what you are going through Be heartened by all the positive messages and love we are sending to you both. Bede will shine through.Maree

  20. I admire your beautiful soul Issy. Your son gets so much of his strength from his Mumma. You have a way with words and every post I read makes me feel so much, like I’m right there next to you. As always, you, Bede, Roy & Gus are in my heart. I think of you all so much xxx

  21. I don’t know you, but wish I did, and feel like I do through your blog. You are the most beautiful mother, parents and family and you have THE most astoundingly lovely and courageous baby. Bede is just awesome – so beautiful and so strong. Nobody has the right to question your ‘choices’ or the incredibly tough decisions you have to make on a daily basis – he is surrounded by love and strength and faith and courage – and he is obviously filled by that and radiates that too. I have been so worried for you all over this last week, though, given that you have not updated your blog for such a long time. I pray that everything is going ok for you all. I keep Bede, Gus, you and Roy in my thoughts and prayers and send you heaps of love and positive thoughts. xxx

  22. Your LOVE and Strength for your beautiful little treasure Bede, is inspiring. I am in awe of all of you. Sending all our love and positivity to you all. xxx

  23. Pingback: A quick catch up. | The Bede Update

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