Today is the 3rd day of Childhood Cancer Awareness Month and in 6 days, it will be the 3rd anniversary of being told that our daughter had cancer. That was just one of many of the worst days of our lives to follow and I miss my daughter more today than I did yesterday. And since this is Childhood Cancer Awareness month, I wanted to share some insight as to what it is like on the inside to be a parent of a child who has/had cancer.
Attached to this post is one of my favorite pictures with Emilie. I still remember that moment when she put her head on my shoulder. I still feel that moment in my heart. I miss that moment in my heart. I think that anyone looking at this picture right now would see it for all of the love it expresses between my daughter and I. And there are a lot of beautiful pictures of amazing warriors and their families out there that are also full of love. However, for us, as families, that is just part of the picture.
When I look at this picture, I also see that big bottle of water. I would make a bet that no one really looked at that. After all, its just a bottle of water. Well, that half of the picture makes me hate this picture, something that none of you would ever know.
As Emilie’s parents, and for all of the other parents of kids fighting this horrible disease, we had to watch, sometimes make our children go through terrible things. Specifically, for Emilie, blood draws were a big fear. It wasn’t that she was afraid of needles, just afraid of how many times nurses would have to stick her to find the right vein. Sometimes it took up to 3 times. Once, they even had to bring in an ultrasound machine and dig around with the needle while watching to see if they could get it in. Meanwhile, while Emilie screamed, we could only hold her hand and try to say words of comfort that really meant nothing in the end. Well, Emilie finally figured out that if she drank enough water, maybe, just maybe, they could tap her vein in one stick. It was her strategy and for a girl who won more games than she ever lost, strategy was her thing. It worked more often than it failed. So, this picture was taken far from home and down the street from UCSF Benioff Children’s Hospital the morning of a blood draw. The bottle of water in the picture was Emilie’s and she was preparing herself for another needle stick.
I don’t pretend to speak for other parents, but I think they would agree. We are torn between two worlds and it is impossible for some to see. For me, this picture represents intense love and the horrible fight our daughter waged. Nearly every picture of Emilie during her fight has dual messages of love and terror. Even her crazy hats remind us of the joy of her goofiness and the reason for them.
To wrap this up, to start this month of awareness, I wanted to share something from inside the ropes. There are parents who have lost that are trying to put on the best smile possible, while feeling the gut wrenching pain of loss. There are parents fighting who are cheerleading for their child while feeling the deepest exhaustion and anxiety of uncertainty. Though these may be things we all could have guessed at, I hope that this picture and the history behind it, can shed a little more light.
I see that water bottle and all of the memories it represents come flooding back. On a good note, Emilie would call herself a “Blood Draw Professional!” So, her strategy worked more often than it didn’t. I was and always will be so proud of her courage. Still, no child should have to be a Blood Draw Professional.
I also see Emilie, resting her beautifully goofy head on my shoulder. I would do anything for that moment again.
Bless you all and bless all of the children and their families who have fought, are fighting, and will fight childhood cancer.