It's the 26th of September. 2011. 8 years ago, I was blissfully unaware that my little boy was dying of leukaemia. I had about one month left of innocence.
I, we, won that lottery on Halloween 2003: "I'm almost certain that your baby has cancer"
We won a better lottery too. Because 8 years later, that amazing little boy is still with us, and healthy (well, sort of).
I don't grieve daily. In fact, I can honestly say that i don't often think of Tom's cancer. But that experience changed me forever. Because of it, I don't shy away from parents whose children are sick, disabled, in pain, dying, dead. Because of that experience, I move towards them in the knowledge that so many others will move away.
And I do not apologise for this. That little baby did nothing but live. He LIVED! The wonderment of that lives with me as much as the terror that his impending death did for so long. I do not want him to grow up ignorant of such a remarkable start to his life.
So childhood cancer lives with me. In the last three weeks, you could have seen me at school, in the street, at the shop, maybe even on Facebook. You could have noticed a gold streak in my hair. You might have thought, "strange", "pretty", "wacky Benedicte". You might have wondered, "why?". You did not voice any of those thoughts.
But if you had...
If you had, I would have reached into my bag and given you a little slip of paper. On it you would have seen the photo of Tom holding aloft a string of 500 beads, with a message:
Tom is funny, silly, naughty.
And a cancer survivor.
Ask me how you can help.
You might have asked. You might have wanted to know about his Beads of Courage, marvelled in open mouthed horror at the fact that each one of those 500 beads represents a medical even in his life and that he can give you a detailed medical history using them. You might have asked how you can help, how one person can help all those children suffering, dying from cancer. You might have expected some trite answer.
I had three.
One: Give blood. Kids on cancer treatment need all sorts of blood products. While you are giving blood, get your mouth swabbed to see if you can be a bone marrow donor. Tom narrowly avoided a bone marrow transplant and he would have needed a donor - none of us in his family are a match.
Two: It's mercernary, it's flat, it's quite ugly. Give money. If you're donating money, think whether you want to further science and research or whether you want to help kids undergoing treatment. Right now, I'm supporting the Beads of Courage program.
Three: Send a sick kid a card. Just a happy card that says, hello. That tells a joke, that brings a smile to a painful lonely day. You will not only be making a little boy or girl smile. That smile spreads - to Mum, Dad, brothers and sisters, nurses and doctors. Don't know where to start? Postpals.
Noone asked me.
And a lot of you who follow my Facebook page will have been overwhelmed by the passion of heartbroken parents desperate to effect change. You will have seen some mothers shave their heads to raise awareness and funds. You will have been left flummoxed. That's ok. You have not lived what we have lived. But through me, or someone else, now you know. You cannot pretend this does not happen anymore.
So I did a little thing in the hope of starting a conversation. It was braver for me than it looked, and that's ok too. Because tonight, in the face of insomnia, I'm reaching out to all of YOU.
So now, you choose.
Will you give blood, give money, give your time and your love?
Or will you move away from this page feeling bad, open up some new game and forget all about it. Your choice.
Remember though... if you know a child, Tom included, NOTHING can garantee that that child will not win that lottery again tomorrow. 10 in the UK, 46 in the US.
"Your child has cancer".
I, we, won that lottery on Halloween 2003: "I'm almost certain that your baby has cancer"
We won a better lottery too. Because 8 years later, that amazing little boy is still with us, and healthy (well, sort of).
I don't grieve daily. In fact, I can honestly say that i don't often think of Tom's cancer. But that experience changed me forever. Because of it, I don't shy away from parents whose children are sick, disabled, in pain, dying, dead. Because of that experience, I move towards them in the knowledge that so many others will move away.
And I do not apologise for this. That little baby did nothing but live. He LIVED! The wonderment of that lives with me as much as the terror that his impending death did for so long. I do not want him to grow up ignorant of such a remarkable start to his life.
So childhood cancer lives with me. In the last three weeks, you could have seen me at school, in the street, at the shop, maybe even on Facebook. You could have noticed a gold streak in my hair. You might have thought, "strange", "pretty", "wacky Benedicte". You might have wondered, "why?". You did not voice any of those thoughts.
But if you had...
If you had, I would have reached into my bag and given you a little slip of paper. On it you would have seen the photo of Tom holding aloft a string of 500 beads, with a message:
Tom is funny, silly, naughty.
And a cancer survivor.
Ask me how you can help.
You might have asked. You might have wanted to know about his Beads of Courage, marvelled in open mouthed horror at the fact that each one of those 500 beads represents a medical even in his life and that he can give you a detailed medical history using them. You might have asked how you can help, how one person can help all those children suffering, dying from cancer. You might have expected some trite answer.
I had three.
One: Give blood. Kids on cancer treatment need all sorts of blood products. While you are giving blood, get your mouth swabbed to see if you can be a bone marrow donor. Tom narrowly avoided a bone marrow transplant and he would have needed a donor - none of us in his family are a match.
Two: It's mercernary, it's flat, it's quite ugly. Give money. If you're donating money, think whether you want to further science and research or whether you want to help kids undergoing treatment. Right now, I'm supporting the Beads of Courage program.
Three: Send a sick kid a card. Just a happy card that says, hello. That tells a joke, that brings a smile to a painful lonely day. You will not only be making a little boy or girl smile. That smile spreads - to Mum, Dad, brothers and sisters, nurses and doctors. Don't know where to start? Postpals.
Noone asked me.
And a lot of you who follow my Facebook page will have been overwhelmed by the passion of heartbroken parents desperate to effect change. You will have seen some mothers shave their heads to raise awareness and funds. You will have been left flummoxed. That's ok. You have not lived what we have lived. But through me, or someone else, now you know. You cannot pretend this does not happen anymore.
So I did a little thing in the hope of starting a conversation. It was braver for me than it looked, and that's ok too. Because tonight, in the face of insomnia, I'm reaching out to all of YOU.
So now, you choose.
Will you give blood, give money, give your time and your love?
Or will you move away from this page feeling bad, open up some new game and forget all about it. Your choice.
Remember though... if you know a child, Tom included, NOTHING can garantee that that child will not win that lottery again tomorrow. 10 in the UK, 46 in the US.
"Your child has cancer".
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