The doctors initially got Bede’s pain under control and he settled so long as he was sleeping on one of us. Although then we lost control and are on nearly double the maximum allowed dosage of morphine, we seem to be getting it under control again now. Mainly he just wants to be on his mumma’s chest or swaying in his father’s arms. He’s on a number of meds including ketamine, morphine and panandol, as well as oxygen because the pain meds interfere with his respiratory drive.
He’s been struggling with his breathing a bit. Everyone is working very very hard to ensure Bede is comfortable. His consciousness isn’t high so we are putting all our energy into making him feel loved and feel settled on an emotional level.
The doctors still felt yesterday and today that we could buy bede some more good quality time and that he would come back from this. I’m not being negative but I’m just not convinced. My deep sense that we are losing him pervades. I feel like this is what his death looks like.
Bede’s light as always is undimmed. He’s not smiling and his eyes are not open often. He snuggles into me and his soul fills the room. His grace, his weight, his light hang gently in the air. It is not his job in this moment to uplift any of us. It is his job to be soothed and loved and seek comfort from his mum and dad. His essence as always is all encompassing.
He is 5 months old today. I woke up after a couple of hours sleep feeling so happy and just deeply thankful for every beautiful light and love filled moment I have had with his warm, joyous, kind soul. there are moments I do feel scared. I don’t want to miss him. His weight, his love and his breath.
I am also posting because we wanted to send a massive thank you to all the people who have taken the time to show your support over at www.wishes4bede.com
From the bottom of our hearts, thank you. We are humbled, so very humbled by the love and care all our supporters have shown over this time.
For those not in the know yet wishes4bede is a website that some of my cousins set up as a way of showing love and supporting us despite the miles that separate. In the websites first 24 hours there has been a massive show of support. So many wishes made. That support has lifted us and relieved us and fortified us in some of our toughest times yet.
Those in my family know I have always taken comfort in coming from such a large and diverse tribe. This website has made me aware of what was surely always true that despite the fact so many of you have never met Bede he counts, he is still one of us, one of the tribe. Part of our whole massive family and that has brought me so much comfort.
As is the case here, there are people we have never met leaving Bede wishes. This also brings us so much comfort. The whole purpose of this blog was so that bede could be known and make his mark but even more basically just exist within his context. He is here. He matters.
For those of you helping me give this gift to my son I am so deeply thankful and eternally in your debt.
I know I always say it but please send him your love. IF this is
him slowly leaving us lets encase him with love and light. Lets wrap him up in care and warmth and tenderness. This is the moment to pray that bede, whatever the next week brings, has some peace even if we do not.
Sending so much love and wishing a could give you a big hug.
Never far from my mind.
All my love and prayers are always with you, Bede and your family. Xxx
We have heard about your little Bede from our daughter and we want to add our special prayers and loving thoughts to him and to your family. May you continue with the strength and faith to nurture him during the coming weeks. He is here for a reason, and he has touched the hearts of so many people around the world.
Thinking of you Isabella. He is such a beautiful boy. Much love to you.
Oh little man. How i love you and we’ve never even met. I keep thinking of the poem about not going gently into that good night.
Rage, rage against the dying of the light beautiful Bede. The world is going to be dimmer without you to brighten it with your smiling face.
Isabella, all i can do is send hugs and love, i don’t know what else to say
Don’t lose hope just yet, keep believing in your son, wishing you lots of love and hugs and an even bigger dose of positivity and hope xxx
Sending you lots of love little bede, it really hits home for me as i have a little boy not much older then bede xx
I am a stranger to you and your family, but my heart is aching for Bede, as we’ll as you and yor family. I am praying for a miracle xx
Your strength is astonishing Isabella. Bede is one lucky boys to have you as a mother. All my love to you all. Xx
Praying for Bede, you and your family xo with words like you have expressed, Bede is a very lucky boy to have such a beautiful Mumma and Dadda xo
We are so proud of you Is and Roy! All our heartfelt love is being sent to your beautiful family. Bede has the most amazing mum, dad and brother and you have the most amazing baby in Bede. xxoo
Your words are beautiful Issy, sending love and strength to you all, especially Bede xxxxxxx
Beautiful little munchkin. Thinking of you all.
I’ve been reading the story of yourself and your gorgeous boy. Brings back the memories of many nights curled up in a PMH armchair with my young lad, but we never faced such adversity. I admire your amazing determination and the beautiful smiles of your boy. I hope for all the best for you and your family, whatever it is that that may be.
Sending love and light to you all, such a gorgeous little man and such a beautifully written piece. Sending prays for little Bede xxx
I am a stranger to you and your family but my thoughts are with your and your precious little man. Sending you love and hope xxx
All possible love and kisses for the great and mighty Bede
My heart breaks for you all. I pray little Bede gets stronger each hour that passes.
Lots of love and strength to you all. ❤
All my love to your beautiful Bede. What a precious and special soul xxx
I heard about your special little man from a friend and wanted to add my thoughts and prayers for Bede. May he be bathed in the love and light of his family and friends both those there with him phsyically and those who are far away. May you too as his parents find comfort in knowing that he does matter even to me, someone who doesn’t know you personally. Sending love and light to you all xx
My heart aches that little Bede has to go through this, be assured that he has made his mark on the world and will not be forgotten. You are inspiring the way you are handling an incredibly difficult time. I am a stranger but I am grateful that you can share your thoughts about your beautiful boy. All my love and prayers go out to you and your family. ♥♥♥
I had heard of your beautiful boy but only just read your blog. My son had cancer 3 years ago and my youngest daughter is just 2 days older than Bede. My love, positive prayers and thoughts are with you. xx
Enjoy ur gorgeous Bede,hold him close to your heart. He is a great light that has inspired me, an angel on earth! I will pray for Bede, you and your family. Take Care
Rest easy, darling boy.
Positive thoughts & prayers flooding your way Issy! The feeling you capture in your words is incredible & palpable! Bede has created such unity! You are amazing to have the strength to share your little man’s struggle with us! He has touched & united so many people! What an amazing little guy. Keep strong Issy we are here to support you!!
What a beautiful little boy. I am so glad he is here. Prayers always.
I have attempted several times to leave some words for you and have struggled to do so until now. As I gaze upon my own sleeping child each evening, sending my own wishes up, I pray that there are enough miracles to go around. Your family is etched into ours simply by meeting Bede and hearing your story. The strength, love and belief that you carry with you throughout this path, touches us all and strenghtens us too. The glow that surrounds your family, sheds light on so many more. I want to send my thanks to you for being so generous, allowing others to walk with you upon this path. I want to let you know that Bede has already made such a mark on this world; he is known. Sending you love and hope and sharing our wishes for a miracle. xx
Wishing you and your family all the love and support in the world. He is a fighter and your all an inspiration. Having a sick child is hard to imagine and deal with. I don’t know any of you but I have a seven month old and he is amazingly precious to us and couldn’t begin to imagine what you are going through. I do know that your strength, commitment, love, kisses and cuddles is precious to him. All our love, support, positive thinking thoughts for you all and your gorgeous boy oxoxox
Sending love your way xx
A hubber from November dig I look at my seven mth old boy and feel the gift, love and wisdom that babies share so unconditionally.
Bede gives and we are all blessed.
He has touched me and every time I think of him I smile for his thousands of givings and send them back to him tenfold.
Love & light & smiles & thankyous darling boy
Good Morning beautiful boy, lots of love, hugs and kisses for you!
Much love and light and cradling warmth wee man. You have found your place in your Mama and Papa’s arms…the BEST place in the world xx
Reblogged this on cassiustoo and commented:
Today I was going to post on my own blog about our latest happenings. But instead, I feel that I need to reach out and ask for those that happen to pass by and read my blog to help me send Bede, this beautiful wee boy love. Love, light and happiness. He is tired and needs the arms and love of a village to hold him up as he walks this journey.
You are all in my thoughts since we heard about you from Madge. I hope that by writing down your thoughts you are finding that things make just a little more sense, you will also have a beautiful record of your love for Bede whatever the outcome.
Shine on all of you, you are such an inspirational family,
Love from Sue
Bede is an adorable little man and I wish you the utmost hope in this journey you have to go through so very early, I cannot even fathom how hard this is on you! I pray for him every day ♥
Dear Isabella, Roy, Gus and Bede,
We have not met though my family too are a part of the OLG community. How I wish with every fibre in me that I could take Bede’s pain and carry his load. His precious soul has made an indelible impression and his beautiful smile will remind me daily to grab every moment and appreciate. Please know that you will all be in my warmest thoughts. Whatever the next day brings, allow me to help lift you. Peace be with you. Michelle Toye
All the best with your journey. I am struggling with some petty med exams and this puts life into perspective. I wish you all strength.
Thank you for allowing those of us who are strangers a glimpse of your beautiful son. His photos radiate such peace and grace, as your words radiate such love. Bede’s footprint may be small but it is lasting. Please know that he is celebrated, loved, remembered.
It’s hard not to upset reading your Blog, and I know that’s not what you want, but your candor is so moving. Bede has made me cry, he has made me laugh and I can see he has filled so many people’s hearts with joy!!!
I thank you for sharing his story, it makes us all realize that life is so precious and should be celebrated everyday.
I hope I never have to feel your pain, but I certainly know what the love of a child can do. I am sure all the people reading about your journey are praying and sending all enveloping arms to you and your family, Bede has left an impression on many people. He has left his mark, he wont be forgotten.
Praying he isnt in pain and the chemo starts to do its job, and fast.
We heard about your beautiful Bede from Cassie, Harvey’s mum. Our three year old son Ethan has brain cancer too, however he is in remission and doing well so far. We have twin girls only a month older than Bede. Despite the sadness, we have seen miracles happen on 3B, and we send all our love and best wishes to Bede and your beautiful family xox
Hi! I don’t know you, except that I just found this site. My heart is so full of love, thinking about sweet Bede. He is so blessed to have you as a parent, sharing his heart and soul so eloquently. Your words and description of him, I understand in the most holy way. I’m not even sure this makes sense, sorry. My tears arent stopping, but it’s like they’re tears of pure love. Please know this stranger is thinking of your sweet boy and sending my deepest love.
I have had the pleasure of meeting this beautiful little boy my prayers are with you all stay strong little man
Another stranger here, but have been following your blog and wondering how bede is going. He is an angel, and he has taught me much about grit and grace and undiminished humanity. My family will be praying for your peace now more than ever. Thank you for sharing your sons life with us.
All the love and prayers are with you! Bede is a superstar forever.
Positive energy and love to you and Bede. Stay strong little man. xxx
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