So I had my day planned.. . I was going to practice my speech for the upcoming MNO this weekend since I haven’t done it yet .. and then maybe carve out time to blog about how often people are surprised by my smiles.. and the joy they see in my family that is ALWAYS present..
…but Facebook had another idea for me..
Tony and I have talked lately about the love/hate affair we both have with the “on this day” option. The one that you can see old memories. .. moments that you shared a year.. or more ago on that day.
Today scrolling through .. luckily after all the kids were at school or napping I was seized by the grainy image on my screen. .. with a caption of bitterly ironic words
“not ready for this”
Oh how I miss the safety of the sadness of watching my children grow. The lamenting on how quickly they change. .. I still do it, all parents do. We love the growth and we miss what is now gone from that child. Even with child loss that doesn’t change.
What does change with child loss is the stab of anger and hurt knowing you will never ever feel that again with your lost child. .. Its looking at moments.. those unpromised promises of their future that were erased..
I look at Jonathan.. with his first loose tooth .. starting to look like a young boy .. And Bubbas. Such a person now. Full of questions and wonder. Charlotte. Joyful. Boundless energy and just enough of an attitude to remind us she is our girl.
And then I look at Bridgette who is soon to be a mobile creature and I wonder how so much time has already passed.. and I wonder how she hasn’t always been here. ..
.. but I know she hasn’t. Its different with her then it was with the others when my mind wanders to life without her. Because ..well .. because so much has changed. .. I wrote about it here and here.
It was so important to us to walk her down the aisle. .. When we knew she had a tumor but not the terminal prognosis we both vowed outloud to each other we would walk her down the aisle one day.. This is never what we meant or what we wanted..
I thought it though. I have never admitted this. But I imagined it. After we cried together.. I left my husband who needed that time to unload his sorrow privately.. I left him to put a then 6 month old Charlotte to sleep. And in the dark as I nursed my mind took off.. I imagined so much. Shaving my head with her. Not letting people treating her differently.. And for a moment.. A fleeting moment that made my stomach turn and now carries such a wasted guilt..
I imagined it. I pictured us walking her down the aisle the way we in truth would just over 3 months later..
It gagged me then. I think I actually slapped my own face at the vile notion of that .. of that impossibility. .. That we would find out was actually inevitable two days later.. Her 6th birthday. .. her last birthday.
See this is why I share like this. That weight. To admit I had that thought. . to write it outloud. .. I feel naked. I feel lighter. And I feel so sad.
I’m sorry tony.. I’m sorry jennifer lynn. ..
So now I sit in a quiet home.. Imagined all that was lost. The bride she would have been. The wife she would have been. and her bangs.. Would she have kept them? Simple and complex musings.. That just take me on the loop..
who she would have been.. and who she was forced to be. Because we couldn’t save her.. She didn’t have a chance to even fight.. No head shaving happened.. No weapons.
My daughter was sent into battle completely unarmed. Terminal upon diagnosis, I didn’t even know that was a possibility. My guess is neither do the other 300-400 parents being told that this year in our country.
Never a fair fight.
But she is still fighting. . she will never ever be defeated. (read how here ) I don’t care when it happens.. because I know it will. I know that when there are options presented to parents she will be part of making that happen.
And when one day DIPG is a treatable or manageable disease my Jennifer will finally be free… Her work done.
So I will too.. I will fight and share along side those sacred god-damned tumor cells of hers. I’ll never be free though. Child loss is a life sentence.
but id choose it again
6 years with you
full of unfinished hope
it is so worth it.
..until there is a cure..