I am not sure what to say or do or how to act. I am sitting here, as what must surely be one of the most blessed and privileged women in the world because I get Bede. I come with humility and humbleness and hope that you will as you have so many times before, get behind Bede.
Bede’s birthday was not our best. If it were any other day we would have taken him into the hospital.
We kept him home not for the photos or the party but just to spare him being needled and examined and scanned on his birthday.
We have been averaging a couple of hours sleep a night for the last 5 nights or so because Bede is irritated. He has been crying a bit, vomiting a lot and grizzling all the time. It was difficult to get food or fluids down his tube without making him distressed.
We were monitoring him at home but knowing within our selves that the tumour was growing.
We took him into the hospital and I knew.
We waited for the scan and it felt like that instinctive feeling you get when danger is coming and I knew.
We got called into the doctors office and now they knew.
Now it was real.
We told Gus and all he had to say was “Come on!”
The scan was just a CT scan which is not overly accurate to compare to the more detailed MRI but it looks like it is growing, it looks like we have regained the 20% we lost. Combined with Bede’s symptoms that is really not great.
The doctors resumed the drug that makes Bede’s face swell up and upped a lot of his other doses to try and make him more comfortable.
Bede is still regularly laughing at us, smiling with us, loving kisses, enjoying playing his piano and is his usual tender self. But there is also distress where before there was none.
His skin is silk, I never want to forget that feeling.
When he sleeps or when he is unsettled his fingers tip toe across the bed looking for me, he grasps me for a moment and then lets go. Happy to have his space but reassured that I am close.
His laugh remains rambunctious and resilient. His magic is soft and gentle and hopeful. His light uncompromising, continuing to lead the way.
He is weakened but he is not diminished.
He is whole.
Everything I wrote in the blog on new years day remains true. He is still evolving and developing and growing.
Every time I look for heart ache there is none. My beautiful, soulful, loving boy is here and I am thankful.
On the 8th of January we have his MRI. That will tell us definitively just how bad a position we are in.
My words can not do justice to Bede in this moment and any words I do have feel like they are all about me and how much I love him and this is about Bede.
Bede is strength and beauty and substance and light and leadership and hope. He is gentle, tender, unrelenting strength and love. He is goodness.
My words fail me, but my deep love for him implores me to write today. To ask you, the people with all the hope and love and prayers and positivity that have bestowed Bede with so many miracles, to please get behind him. Focus your happiness, hope, positivity, prayers, love, whatever you’ve got on Bede. We want as much happy time as we can get to afford him a life filled with as much, wonder, marvel, joy, relaxation, love and exploration as we can. We are not greedy, we know this wonderful life will come to an end, but for now we want more. More for us and Gus but even more importantly more for him. I truly believe your loving and hopeful support has achieved that for him before.
I have said it before and I will say it as many times as I need to…. I promise you he is so very worth it.
As the tumour grows and effects his ability to have food or rest he manages to retain his peace.
As the chaos of cancer begins to grumble and swirl he is grounded and he smiles and laughs.
As the irritation flits in and out he loves tenderly.
We love him deeply, a love that is only paralleled by our pride.
This resilience, beauty, peace and happiness is his defining truth.
He is small but he is mighty. He is uncompromisingly Bede.
Beautiful loved Bede. You are always in our thoughts and prayers. All of our love to you sweet boy. Xxx ♡♡♡
Sending love and hugs to you all but especially beautiful Bede. What an old wise soul with a gift of spreading so much love and strength. As usual Isabella, your words are written so beautifully and with so much love, including us in your journey with your beautiful boy.
Our family is keeping Bede in our thoughts and prayers xx We will rally around him even through the interwebs! much love, hope and tenderness to you all!
Bede, I can’t begin to tell you what an amazing person I think you are. If only all of us grown ups could be as insightful and persistent as you, this world of ours would be a far better place. Always in our hearts and thoughts, constantly in our prayers. Xx carney family
Reading your blog last night of Bede’s time at home, his milestone of turning 1 and being with his family- I am saddened to read this today.
There are no words we can give to comfort you, your family is yours to do that for us.
Bede – know that you are always in our hearts, in our thoughts and although not of the religious belief, I am and will be always sending our love, strength and everything else he needs to continue the fight.
You are an amazing little soul and light up our world – keep on lil man and we will continue to be there by your side
Oh sweet Bede. I’ve never met you or your family, I’ve been following your story since Leish told me about you.
Sending you and your family all the love, strength, prayers and hope that I can. Know that we’re thinking of you with all of our hearts.
All our love and strength go out to you Bede and your wonderful family. I read the words today and am so moved by their simplicity and truth. May you continue to live as best as you can for as long as you can showing us all that it is the way we live that matters, the love we share and the courage to keep going although life may be tough. You give us all courage Bede.
Izzy, Roy, Gus and Bede, we are sending you all our love, positive thoughts, hope and prayers, we wish for lots of strength and courage to be bestowed upon you in this battle…….Glynn and Gary and family ….big hugsxxx
Yes. Yes he is worth it.
To the mighty Bede and his amazing, inspiring family:
I’m sending you all love and wishes for more hugs and giggles and milestones. I’m sending you love and support and standing beside you in spirit, knowing what it is like to wait for news. When Wednesday comes, I wish for you the peace that comes with knowing where you stand.
Sending love, positive thoughts and best wishes to Bede. What a beautiful little boy. Keep shining.
“Faith, Hope & Love are three very important essentials in life that cannot be seen with the eye, but believed in your heart and felt deep within your soul”.
From deep within our hearts and souls, to you little Bede, we send our faith, hope and love. Always Mighty!
Keep sharing that amazing and wonderful giggle little boy, it is pure light and happiness!
Bundles of Love from Nan and Pop D.
He is so mighty and so are you! I wish you so many more special everyday moments with beautiful Bede. Xxxxxx
Will keep your wonderful little man in my prayers xxx
Gorgeous Bede is always in my thoughts. Sending all my love and hugs for Bede and you beautiful Isabella xxxxxxx
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My prayers and hopes are with you for Wednesday. Blessed be beautiful Bede.
You are a gorgeous little boy Bede and your family are amazing, I will pray for you all God Bless xxx
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Light that shines is the light of love,
Hides the darkness from above,
Shines on me and it shines on you,
Shows you what the power of love can do. Shine Shine Shine Shine Shine Bede. What a truly beautiful gift you are..
Beautiful boy. Sending love and best wishes to Bede.
Please God watch over this darling, blessed, precious much loved little boy. Xxxx