My heart is raw.

There has been so many beautiful and busy things happening in our lives lately. All the while there is Bede. Steady, unwavering. Our touchstone of love and hope and light that keeps us all grounded. That slows us all down. That makes sure we never get caught up in the business in life.

blog one

 

It’s funny how elastic time is. Cress has just turned 1 and it feels like she was only born yesterday. That same year in Bede’s life feels like an age. He has accomplished much but he has also endured much.

blog a birthday

Last post I wrote about how Bede’s distress prompted me to ask the doctors to bring his MRI forward.

So there I sit. In that same room. With that same doctor. I am in the same clothes. Roy wears that same weathered look. But getting your heart broken is never the same.

The doctor asks if we need a support person. We laugh. We have made our home here in this moment. He laughs. I know what that question means though.

It’s growing again. We’ve never had growth in this many scans in a row. Not even in the beginning.

Cut to the chase doc. “How long?”
“Well lets look at the scan first”
“I just need to know”
“6 months. Unless the cancer spontaneously stops growing I think you have around another 6 months with Bede.”

But if having your heart broken is never the same what’s the difference this time?
This time the aftermath is brutal.

blog a 11

My heart is raw. Because the truth is I want my son to die. I’m tired. He is tired. I want peace for him, rest. But I instantly hate myself because I know then that is all there will be. He will have no more growth, no more moments tenderly reaching out to his brother, laying next to his sister. He wont squawk away at his dad anymore, he won’t let me kiss him in the way only I can.
He will just be gone. That is not enough for my special light filled boy. Life is hard but death seems worse.

Roy likens it to having something you love more than anything else in the world, that you want more than anything else, that you treasure above all else but knowing you can’t have it. Knowing it’s better for everyone if you don’t. Knowing you need to let it go. It’s heart breaking.

All I want for Bede is happiness. I grieve that we don’t all get that.
I am angry that we feel so alone.

Roy is confident about life after Bede, that he will be able to go forward living a life in testament to him. That his legacy will be brilliance.But I am scared. Scared that without my steady ship, my touchstone, my beautiful gentle soulful boy I will crumble because my world will never be the same.
blog a 2

I am scared that the woman that will mother cress will be a stranger to who I am now. So I try to smile as much as I can and love as hard as I can in the hope that I can build her up enough that she will weather having me as her mum.

We go on trying to be present, trying to soak in every single moment, utterly mindful of how precious each one is while we spend sunny staurday afternoons choosing toddler sized coffins that would never, could never hold all that our son is. My heart bleeds and I grieve. I am tired. My bones and muscles and every tendon and ligament ache.

But as the bitterness of life rages the storms are rolling in across that familiar ocean. I know this too shall pass.

As I type tears stream down my face and I pound at the keyboard because life is hard and even writing isn’t easy anymore because there is so many conflicting things to say. Because of course amongst all this grief there is light. Bede’s interminable light.

 

blog a 2 puppy

We got a puppy!

blog a puppy

 

Bede has grown more in the last few months than he has in the past few years and I am reminded that often despite the agitation, Bede is the fullest version of himself when his tumour is growing. Gus says now there is just more of Bede to love.

He is immersed in his therapy at least three days week. He is building his upper body strength and undeterred by previous failings he is attempting to crawl. This kid is the personification of determination He is relishing laying on the grass in the sunshine with his brother and sister. He is laughing fuller and deeper than ever before unable to catch his breath as the giggles pour out of him.

Our little Bede who can sign and screech but can not speak mimicked the words ‘I love you’ back to me the other day and it was everything to me.
blog a sibs

Through all this sadness and fear and joy and light and grief and hope and uncertainty and love we have found so much comfort in our friends and community.  A fundraiser is being held for Bede on June 17 in North Beach. With an aim to making his life as meaningful and as happy as possible and his death as easy and as comfortable as possible.

 

I will post more details later but for now you can check out some of the details for the event on the Facebook Event page (CLICK HERE) or on the booking website where you can also buy tickets if you’d like to come down and spend an eveing with us and say Hi. We’d love to see you!
www.trybooking.com/lanh

Our dear friends have also been kind enough to set up a gofundme to help us support Bede during this time and said some beautiful things about us:
www.gofundme.com/wishesforbede

I feel like we are in a fog and its confusing but one unmovable truth remains…
He is small but he is mighty. Bede shines.

55 thoughts on “My heart is raw.

  1. Bede will always have a place in my heart. He continues to leave an indelible mark on my life, on my perspective and on my reactions. My words feel hollow but please believe me when I say thank you for sharing Bede with us. He is profound.

  2. This is both utterly heartbreaking and astoundingly beautiful to read. The love you have for your son resounds with every flowing word and I know his legacy with live on with you and your family. This has made me hug my little boy all the more tighter and I’d like to thank you for sharing your son with the world. He is remarkable.

  3. Bede is a beautiful gift. Your words of love and unwavering courage bring him to life each time I read them and my heart breaks for you all. I have never met your little boy but believe me when I say, he has been in my heart since your first introduced us all to him so long ago. He is an inspiration.

  4. Thank you for your update on Bede. I have followed him for a long time now. You have given him the best as a baby and growing boy could have had in a short life. He too has given you both something that no one else in your life is going to be able to give you. He has taught you so much how to overcome adversity and you will be grateful for these lessons and for having Bede in your life. Bless you all and I pray that if these should be Bede’s last days with you, then may they be painless and peaceful and surrounded with love.

    Heartfelt thoughts to you all

    Ceri Wiercx.

    SOMERSET WEST,

    W. Cape.

  5. What a heartbreaking and honest post. I wish your son a lifetime of love and happiness in his short time, and peace to all of you when his time runs out.
    As a mother, I cannot fathom how much you are hurting right now. Love to you, brave momma.

  6. Love and light to you and your family.. Your beautiful beautiful son is surrounded with amazing people that love him more than words. Sending strength to you all.
    Xxx

  7. My heart breaks and soars for you in the same breath. I imagine this is how you feel one thousand times a day. I will continue to cheer for you all. Stay strong, and Bede, stay mighty!

  8. As always your words… Even with your hurting heart… Are beautiful and elegant.

    You know what… I’m neither beautiful or elegant and I just want to scream “THIS ISN’T #%^*ING FAIR. #%^* YOU CANCER!” for you.

    I know it won’t help. But I’m still gonna.

    You’re allowed to crumble… God knows most would of way before now… But I have this sneaking suspicion… I’m pretty confident that your husband is right… that you will rise again… And live that brilliant legacy… A beautiful testament to Bede’s life here on earth… And beyond.

    Thank you for sharing Bede with us all.

  9. Bede picked the most perfect family before he arrived here. One that could endure all the heartbreak yet provide all the love and strength and positivity he needed, and I am sure one that will be strong enough to deal with the aftermath and let his legacy live on through your love and memories. You are an incredible mother (and Roy an incredible father)
    Thank you for coming into our lives and sharing Bede with us ❤️❤️

  10. I have been following your story for a long time now and as heartbreaking as this post is, know that you guys are truly amazing, bede is amazing! Dong hate yourself for wanting peace for your gorgeous boy, be proud of yourself for being the strength that has gotten bede this far. The love and strength you show for your beautiful boy is inspiring.
    You are all in our thoughts. Always.

  11. This beautiful boy touches so many lives and teaches that in life love is what is important. Thank you for sharing this amazing little one.

  12. The immense heartache, the unfairness of it all…..that God foresaken disease….

    You are never far from our thoughts Izzy, Roy, Gus, Bede and Cress. Always in our prayers.

  13. I’m sending you all the love that I can and still know it’s not enough. I hope some of it makes a small dent in your feeling of despair and loneliness
    So much love joy and hope to bede and all of you

  14. Dearest Issy, Roy, Gus, Cress and Beautiful Bede

    Thank you all for sharing what is such a personal journey with Team Bede! For I am a stranger on the other side of the country – but have been moved by your beautiful words for your gorgeous Bede!

    A beautiful soul that has already endured way too much. But he has also embraced those adversities and shown us all how to live, love and be happy!

    My heart is now heavy, so much heavier than before. For a family that is going through a journey they should not be at this time and for Bede, who deserves to experience all that life has to offer.

    I send with all my might: strength to weather the storm, light to brighten those dark times, and peace for little Bede.

    Thinking of you today and every day xxx

  15. Beautifully written but heartbreaking . Bede is and always will be an inspiration to us all . He also has the most amazing family any child can have you are all his everything. Continue doing what you all do best loving this beautiful amazing little warrior Bede .

  16. I just wanted to say that I think you and your husband must be some of the best parents I’ve never heard of. You are taking care of that beautiful middle son, and it looks like you are also making relationship between the siblings.❤❤❤❤ love from Norway

  17. My heart aches as I read your latest post, hope upon hope, now dashed, I think God knows you are both so weary, you have all loved and lived and fought so hard, Bede always so gallant throughout an ordeal that no child should have to endure.
    Issy I have been so moved by your resounding love strength and tenacity for your darling Bede and family,
    Bede chose to enter your life, your unwavering love and tenacity to fight this battle with him, we search for the reason behind and through all this heartache and sorrow it is not yet clear, one thing is for sure Mighty Bede’s legacy will forever stay strong and live on in all of our lives.
    So now with a very heavy heart and with tears I send Love ❤️ Strength, Prayers and Peace to you Roy, Gus and baby Cress.

    Darling Bede, may your light forever shine so brightly….God bless you little Warrior you have touched us all.💙

  18. Thanks for sharing your struggle. ..what an amazing little boy…and your an incredible family. I’m not sure what to say. ..just sending you all love and prayers.

  19. Thank you for sharing your journey, albeit, I wish you never had to. My heart breaks for you alll and all that it should be. You are a obviously a very strong family and the love you share WILL get you through this. I commit prayers for little Bede for comfort and I pray for strength for all the family, come what may.

  20. my heart goes out to you all, what a strong and wonderful young man he is i am also feeling your pain its so hard not to cry , the journey you are all on is a hard one but i hope the suffering of you all will soon end ,i hate to see a child in pain and what bede is going through is has to be awful but you are an incredible family to fight along side him and he is just unique my love to you all and i shall follow your story till it ends be strong as i know you all are myown tears are falling for you all

  21. Thinking of you all, sending our love, prayers, healing and calming light and love xx Bede chose an amazing family to share his life with before he came to earth, your light has helped him to shine his beautiful sun beams into so many lives. Love Lauren, Sam and Em xx

  22. Yes, thank you so much for sharing your struggle with us. Just now was the first time i’d heard about Bede, you , Roy Gus and Cress on the “news” in Australia. You have taken my breath away with the enormous love and endurance you all have. You’re all an incredible family and that is what I believe keeps Bede going!! Don’t you ever feel guilt with how you many feel at times as it has to be an huge task you all do. You’ve all given Bede a wonderful life and he’ll decide when it’s time to rest. Look at what you’ve given each other, I wonder could I have done that. Sometimes , no a lot of the times must be so damn hard, so I’m sending you peace, strength and love to you all. Thank you Bede, I won’t (or I will endeavour to now) stop complaining about my lot in life, You are indeed teaching us all “to stop our damn complaints” and get on with living!! Love to all and now I can follow your story with my hands holding your spirits high.

  23. One of the most difficult things in life is to watch someone you love fading away with a terminal illness.

    I am a junior doctor, who has done rotations for a couple of years in paediatrics and in adult palliative care. I have witnessed with my eyes the struggles that parents go through to watch their children undergoing strong, unending medical treatments, and the difficult times a spouse sits next to his to her beloved while waiting ‘for the time to come’. I admire those who are going through this experience, and those who have gone through it and survived by showing their triumphant love. Thank you for sharing your experiences and feelings honestly. You are a great mother, and your family are exceptional. Bede is a warrior! God bless you all!

  24. Hes so cute beautiful wee man. Have you tried Frankensence Oil to smooth on his head and a couple drops on his tongue to sooth him. My thoughts are with you all.

  25. My heart aches for you and can only imagine how difficult that was to write. I’ve followed your beautiful Bede’s story since the beginning and continue to send my love to you all xx

  26. It is the most terrifying thing you will ever ever go through and the hardest thing is wishing you could of done more. We just lost our 10month old 4 weeks ago and i still break daily. But you know what… thats okay. And do you know whats even more amazing… my two year old makes us go outside at night to say goodnight and waves to his brother as we drive along. Children as so resilient and incredible. They will only let you crumble a little. The have this amazing sense and know just what to do when you really need it the most. Please hold your little man for me because i wish every day i had just one more squeeze for him. No child deserves that sort of pain. Xxx take care and be kind to yourself xxx

  27. I’ve tried to think of something decent to write, but really what is there to say. You are facing a horror noone should, and one we all fear. The universe sometimes just deals a terrible card. Good on you for sharing, and stop with the guilt … you gave the boy a red hot fighting chance and that’s all anyone can ever expect. All the best, wishing the universe to calm the waters for you and yours.

  28. I’m sitting here tonight reading your story, tears are falling as I read and type, there is nothing I can say to make it better , to stop your pain or BeDe’ s , please give BeDe and all your family a big hug for me , may you all be brave , may you all enjoy what time is left ……

  29. God Bless. Whilst I have not followed Bede from the outset, I only recently came across your blogpost that was through my news feed.

    What a heartwarming story. You have said it so simply….cherish your loved one(s) so much that -if it comes to it- you will sacrifice your bond with their permanent absence. You are a very strong person. We are with you.

  30. I am reading your updates with tears streaming down my face. No family should have to go through what you have been through. Your strength, faith, love & devotion is so inspiring. You are an incredible mum & I hope that somehow all our prayers will carry you and you will know you are not alone. Please continue to share your beautiful Bede with us. We want to know, our hearts break with yours and you are constantly in our thoughts & prayers.

  31. This is the first time I have read of Bedes story and Wow. You are one strong mumma. I truly admire your dedication and strength in the face of the ultimate devistation. Much love.

  32. Continue being the wonderful family you are to your gorgeous boy showering him in love always . You are all truly inspirational. Big hugs from Scotland xx

  33. As a parent, I have been in your shoes and thank you for being truthful and baring your heart, it’s the best thing you can do in Bede’s honour – tell his story as it is, as his story is also yours because you are entwined in family. The next months will be awful, I won’t lie, but they will be whatever comes, and I hope that this time with Bede will bring you peace and some acceptance as hard as that is. As we can never go back and cherish our lost children, only their memories, please remember that you do not have to be strong all the time!!! There’s so much pressure on bereaved parents to be strong and behave in a certain way, but know that just by getting out of bed and carrying on in the face of what is happening and what is to come is so courageous. After almost 8 years (on 13 May) without my Josh, I still find ways he has touched my life, and those of others, and so it will be for you with beautiful Bede.
    Surrounding you with love and the light of the angels, come what may.

  34. God this brings chills and tears what a specoal lil boy cant image how you get through every day fighting like you are. Treasured moments. May his last final months be full of good memories. Xx
    ❤ from the uk xx

  35. Heartbreaking. Always thinking of your family and sending love and light. Thank you for sharing something so raw. I have no profound words but I am here backing the beautiful Mighty Bede all the way and wishing him the peace he deserves.

  36. Bonjour!
    Reading your words brought tears to my eyes. I am a dad of a nearly 1yo boy that I love more than I thought I could ever love someone so your story touches me deep in my soul. I admire the courage and patience you all have in such hard times. Keep on loving, smilling, laughing and supporting each other like you do because that is what life is made of. You are doing great!
    Je vous embrasse fort.
    Chris (France)

  37. Hi Isabella, so sorry to hear about Bebe, if you keep you head up high and always remember Bebe is such a wonderful and special child, when it time to let him go you won’t need to worry about his pain anymore

  38. J’ai lu votre histoire qui m’a touchée pour une double raison. Je suis également maman. Et mon père est malheureusement décédé d’un cancer au cerveau au début de cette année. J’ai donc doublement pleuré en vous lisant. Et loin de moi l’idée de vous blâmer. Mon père n’a pas pu se battre. La maladie l’a emporté en quelques semaines. Je suis restée les quinze derniers jours à son chevet, des heures durant dans sa chambre alors qu’il n’était même plus conscient de ses gestes et de notre présence. Pendant ces longues heures, j’ai souhaité que son calcaire (et le nôtre ) finisse au plus vite. Je m’en voulais de le vouloir mais c’etait trop pour moi. A 33 ans, je n’etais pas prête à le voir partir. Quand il nous a quittés, j’aurais voulu n’avoir jamais souhaité qu’il parte.
    Alors je n’ose imaginer votre calcaire en tant que parents face à votre enfant malade.
    Je vous envoie mes meilleures ondes…je ne peux rien faire de plus. Courage à vous tous.

  39. Dear Isabella, Roy and family,
    I have followed your post from the very beginning. A friend shared your blog on facebook and I haven’t been able to stop reading for nearly 3 years!
    Firstly I wanted to say that Bede has the best parents in you and Roy, so strong, honest and breathtakingly loving.
    Secondly I wanted to share my utter disappointment in humanity. Your last post was so raw, but for people to attack you, and for you to have to justify yourself on radio, makes my heart break a little more for your family. Your family has been through so much, and as a mother of a 3.5 year old, I cannot even imagine your journey. You have always show light and positivity, even in the most difficult of situations and for these people to only see 5 little words clearly have no idea of what the last three years have encompassed!
    Your son, is light, is a miracle, he is the earth… you and your family are truely an inspiration.
    Do not stop with your honesty as this will not do justice for what you guys have been through and achieved.
    I know my life has been touched by Bede (over in Brisbane), and from your blog, so many others.
    Bedes light surely does shine bright!

  40. Hello there
    Long time no news update from Bede and his family!
    I sent a message some days ago and I hope you’ve seen it. Wishing you all of the best and wishing healthy mood for the Bede.

  41. Your beautiful boy is loved and loves in return. We lost our little girl 11 Weeks ago she was nearly 9
    Months. Nothing I can say will prepare you for life after Bede has left but know you will get up you will get dressed you will survive it will be hard but you will I promise you. The biggest love and hugs to you all tell Bede to find Lexie shell show him the ropes when the time comes xxxxx

  42. Your boy is beautiful from your blog and his pictures I know two things for certain. He is loved and loves in return. We lost our 9 month old 11 weeks ago. It is terrible and nothing will prepare you for this. However know you will get up you will get dressed andyou will survive I promise. Kiss the skin off your beautiful boy hold him and remember those moments that’s what will get you through. Tell your beautiful boy when the time comes to find Lexie she will show him the ropes. Biggest love and hugs to you all in the coming months xxxx

  43. You are always in my thoughts and heart, stay strong. I hope you will be buoyed by the incredible support and love around you all and by the way that Bede continues to show such spirit and joy.
    Sue xxxx

  44. Passing judgement on someone’s painful personal journey caring for a family member with terminal cancer unfortunately stems from ignorance. Any honest, sensitive person that has gone through this experience will admit to conflicting emotions. You live and breathe their daily pain and it can be unbearable to watch their suffering and wish they could rest in peace, but you also don’t want to let go. That’s the heartbreaking journey. The memories you have created are beautiful and you will cherish them forever with your family. Hope you receive the support you need. Hugs.

  45. My heart is breaking for you and your family . Unfortunately we know first hand how brain cancer works its way into your life and can take away someone you love with all you have . We lost our son Nathan aged 23 1/2 . I totally understand where you are coming from when you say you want peace for Bede and an end to his suffering . Watching your child living but not in the way we all hope for our children is heart wrenching. Watching and knowing that you just can’t fix it , a kiss and a hug while it is so important you know it will not change the outcome .
    If you ever feel you need someone to talk to , email me , I am happy to listen .

    I send Bede and you all much love ..

If you leave a comment for us or Bede we'll make sure to read it! Thanks for following Bede, we appreciate each and every one of you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s