I am not sure if I have been doing Bede justice. If I have been able to find the right words. Though I suspect I could search for a lifetime and there would be no words glorious enough to befit him.
You know the blog is a funny beast in some ways. Early on I would pour my heart in to it, my child was laying next to me dying, the emotion was close for the recall. At times I have felt tethered. I have recruited so many of you to back Bede and I so desperately want to bring him to the world and hold him up as a shining example and say this is beauty and joy and light. Sometimes it is hard to write and I have found myself making myself write to honour the support you have given him. Tonight I really want to write.
I want to say that right now he is rolling back and the forth on the floor grizzling but my goodness he is oozing heartbreaking, life altering, world shaking beauty.
Sometimes his eyes are subdued but they are pools of love and hope and wisdom and all the secrets of life that he has been so generously sharing with the people that will pause long enough to gaze into them.
Sometimes his voice gives life to his discontent but the shades of light and love dance within every inflection.
His fingers reach out and grasp me and his daddy, purposefully and with hurried conviction but he is gentle and thoughtful in his purpose.
When he wakes he smiles. His laugh is round and whole and sincere it shakes his core and then it tickles mine.
His head is close to bald but that lets the gentle afternoon light glide across it a little more easily.
He looks within himself as the sunsets and finds a non medicated peace. It’s not synthetic, it’s not prescribed, I have not raised him to have it, it can not be given. His peace wells bountifully from deep within him and if you’d like a piece of his peace he’ll freely, happily, lovingly give it to you.
His light fluctuates it is true but it is beautiful light and it always has depth. When he is defiantly glowing, persistently shining and all out dazzling it is captivating.
There is some how earth within him. He is grounded and has substance and light and weight and hope. They meld together within him and he overflows with the goodness of life. He is beautiful, he is truth.
He is understated magnificence. Who even knew that existed? Understated magnificence.
And yes there will be grief but that is for me and you and his daddy and his brother and all those who have known him or of him or who have been privileged to love him through real time or cyber waves. There is no grief for him.
He has lived. He brought it.
If we choose not to measure life in longevity but by life lived Bede has out done us all. He has found joy and adventure and experience and life in the big things and the tiny things. He has calmly, minimisingly, walked through horrors and let them go.
He has been ever present in every moment. I’m sure you could not say the same.
He has brought it.
So yes there will be grief but it is not his. Yes I posted a post where you could find grief but that is not ours. For Bede is here. What a gift.
A life altering, world shaking, course defining, light embodying, secret telling, profound soul is here. What a joy!
I think the reason I started to feel tethered to the blog and started posting less was because I doubted myself. I started seeing everyone calling Bede heartbreaking. If that is what you think then, and I say this with all my kindness, my heart breaks for you.
He is beautiful and though his life may be fleeting it is impressive, it is joyful, it is the greatest gift I never even knew I was worthy of until he raised me up and made me worthy.
Through all this bigness, big words, big heart, big impact – he is tiny, he is gentle, he is precious. Unwaveringly true.
None of this is cause to call our lives heart breaking. It is not cause for sad face emoticons to be given out like they are going out of fashion. It is not cause for pity. If I am honest, and I fear I may sound abrupt, if that is your take, I pity you.
I am sorry that his light isn’t falling on your face, I am sorry his profoundness isn’t having the opportunity to raise you up, I am sorry you haven’t experienced his healing tenderness. Lean in a little closer, smile a little more broadly, love a little more recklessly, rejoice a little more daringly and you will feel it to. His shine is generous and I know it is not just confined to his family.
Yes I posted earlier today. It was a call to arms of love and happiness and faith and blind hope. Bede is here, dancing his way through life. He has a had a bad couple of days but he is dealing with it with smiles.
Tonight Bede’s love envelops me. His strength fortifies me. His light dazzles me. His tenderness heals me. His persistence encourages me.
I urge you to get behind the boy who will give you whatever you are open to taking from him. Get behind him with positivity.
Tonight the roses are in full bloom, the breeze is in and there is magic in the air. The world is more beautiful, more light, more wonderful because he is in it.
His is a life worth celebrating.
(I posted a shorter post earlier today. To check it out and find out why we need your positivity leading up to the 8th of Jan click here.)
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How Blessed and privileged I feel sharing the majestic journey that is your Bede. We share his smiles, his light, his soul though your words Issy. I touch his face on my computer screen and send volumes of strength, love, prayers and fingers of joy that you share such a love with us all. You too are magnificent. josephine
Like Bede, you are a true inspiration. It is easy to see where Bede gets his beautiful soul from.
We are behind you Bede. We pray, we hope and we wish that you continue to outshine this illness. We are lifting you up and even though many of us don’t know you we are better for reading your story and leaning of your resiliance. Your Mumma is right, you are not heartbreaking but the fact that you are going through this is. I’m inspired by your courage and your strength and I owe you more than you will ever know. You have taught me amazing lessons about enjoying every moment. You Bede, will change people for the better. May you live with continued peace and happiness and lovely snuggles with your mummy and daddy and big brother. We are here and we will pray and pray and pray that you can be pain free and happy. We won’t stop thinking of you and cheering you on. Big hugs to all of you xx
I know I for one am so greatful to be able to read your families story. Bede is an amazing little boy & we are all lucky to be able to share in his strength & never ending fight!
You guys are doing an amazing job of parenting your beautiful boys
I am still thinking of you all. I am still praying for Bede. Sending you love and hugs. Sar in Perth. xxxx