Cancer survival day. 2 years ago I didn’t even know something like this existed.. and if I did it was simply a blip in my day. Not a grinding and scratching reminder of what Jennifer is not.

I thought it would just be one day staring me in the face. I was wrong. There is build up..

Its truly a wonderful thing to celebrate. .. I am just so horribly jealous that I can’t be part of it. I’m long over lamenting being part of the cancer community as a whole, I have met some of the greatest people in my life through it..  But I hate that I am, that we are,  the losers. A tumor in just a slightly different place in her brain.. it could have been the difference between life and death. . It certainly would have been at least a chance. With my 6 yr olds cancer, DIPG, there is no chance .. there are no survivors.

I hope as people share their always hard earned triumphs over childhood cancer.. I hope they share how the road is harsh and unsettled. How surviving cancer, especially for our kids, is like a field of flowers.. filled with land mines that you must walk across. Its a gift. It can be wonderful. But its terryifing and there are so many potential problems that can blow a family up.. and back. ..

I talked with a mom today. About how hard it is for her to be ending chemo. How scary it is to be done actively.. even though it all looks good.. It’s unnerving to not be actively fighting. She is scared. She is constantly looking over her shoulder.. hoping, but waiting. ..

But he is a survivor..

Or the mom that’s part of our own Unravel family.. her son is 5 years in NED (no evidence of disease). Instead of celebrating in Disneyland this summer she and her son are in New York for this summer.. for him to get treatment to try to help him continue growing. A difficult physical surgercial option . that also has quite a high price tag for the whole family with Daddy and 2 younger sisters staying home.

But he is a survivor.. 

Both just snapshots of survivorship we don’t often hear about..

Survival.  Simultaneously brutal and beautiful. In ways I cannot truly understand.

or maybe I can.

Jennifer did not survive. She battled for 3.5 months with hope only to get a little bit longer with us.. Abilities stripped from her one by one.. Like her life clock was slowly reversing her. .. Losing all the milestones we had counted and passed.. walking, talking, the potty… smiling.. Jennifer did not survive.

but

Jonathan.. he misses his big sister and best friend. He went from the second child to our oldest. From a very content follower to a forced leader. He remembers Jennifer and he remembers well who we all used to be. And he knows how a child can go from normal to sick to heaven so quickly.

But he is a survivor..

Nicholas.. He struggles to remember her. He sees pictures and videos of them together and wants to pull those memories and moments out from his own little brain. His big sister who took care of him and protected him. The only one he would let help him when his natural stubbornness emerged.

But he is a survivor..

Charlotte.. The living sister and daughter. She stopped talking when her sister left us. It resonated and impacted her.. in ways I cannot comprehend. She only knows her big sister through flat images and a granite headstone. She kisses pictures and asks us to do the same. .. But video.. it resonates and impacts her.. she reacts strongly to hearing her big sisters voice and wants more and more and more . .

But she is a survivor.. 

Our dandelion wish.. He/She will never know their biggest sisters touch, they will never know a home without a echoing sorrow. They will grow knowing sometimes children die.. They will grow only knowing a working mom. They will be born bearing a deep and invisible scar..

But (s)he is a survivor..

Tony.. A strong upright man. But alone. Walking against the pull of darkness. Wanting to honor his first born but scared of how dark the pain can truly be. Her Daddy always.. broken and limping… her Daddy always..

But he is a survivor..

me..

oh God buggers

me too.

i am doing what you never had a chance to.

what we never gave you a possibility of

…

i am a childhood cancer survivor

..until there is a cure..