I haven’t been able to shake the overwhelming pain from last night. I am so sad. I feel so broken. I miss her so much.
One of my best friends daughters starts kinder tomorrow. I know it will be a hard day. I should be at her house now helping her to prepare. I should be there sitting on her front porch when she gets home.
I just can’t. I am too hollow to absorb anybody else’s pain.
Sometimes I really really hate the new me.
I am struggling right now. . just missing my daughter so simply and so completely. Scared of the future and how I am going to survive this year after year without totally losing my mind. I just can’t see it getting all that much easier.
and tonight it makes me angry at everything and everyone…
I should be packing school lunches and planning a birthday party for my boys. I was interviewed today for our local paper. He asked something about the non profit that lead to this true answer.
I love it. It gives me a purpose and a meaning. And I hate it. Days like today I don’t want to have one. I just want to be a mom to 4 living kids.. and if not that well then I just want to curl in a ball and grieve. Without the great people I have supporting me I couldn’t be doing any of this.. because I am just not that strong.
And I am scared I am going to screw it up. I am scared I have too many people that care.. too many people that are invested. .. I’m a mom .. Its all I ever wanted to be. I never wanted to be CEO of a pediatric cancer non profit. I taught pe and then became a stay at home mom. That’s what I am equipped for.
I am so lucky to be surrounded by people with the experience to pull this thing together.. but I am so scared about all of it. Tony is too. Its a wonderful blessing this non-profit and its one helluva nerve wracking endeavor.
.. the sorrow of today seems to be moving aside for the anger of tonight. I am angry that my husband and I had a reason to create a foundation..I am angry that my new eldest struggled today and I can’t be sure exactly what it was.. but my gut knows he just really missed his best friend today.
I am angry that I am jealous. That I am not a good friend .. that my family will forever be incomplete. and yes I know..I believe.. only incomplete on this earth.. but right now this earth.. this time is all I really care about.
I am angry .. that she is gone and I can’t do a damn thing about it. I am angry that I live in a constant fear it will happen to me again. That I have almost convinced myself that its not if its when its one of my babies again. And I am so scared I won’t have done enough by then .. made enough change to get them a different outcome.
I get so many invites to like or follow other cancer kids. And I almost never can do it. I get so jealous of the ones surviving and living… And my bitterness hits a all-time low when I see ones that don’t share any of the facts.. to inform the people in their corner about more than just their kid in the fight. I am angry that it matters so much to me what other families in horrible situations chose to do with it.
And for the ones that aren’t going to make it. Especially other DIPG babies.. I just can’t. It’s not until they are close to death that I feel like I can step in. Thats a place I can actually do something other than remind them of how horrible the future is.
I feel the same guilt when I see their little faces.. the same that I feel when it comes to my own daughter. That I didn’t do anything before I was a cancer mom…Fuck tonight its so powerful.. my guilt. The want to empty out my lungs with
To my Jennifer. That I didn’t do what I was supposed to and fight to protect you from the moment I was lucky enough to have your 7lbs placed in my empty arms.
To all the parents in my same nightmare boat..
I wish I had done more for all of us long ago.. joined somebody else’s fight.. not turned the channel or skipped over articles that I sure where there sharing the information that I chose not to read.
It’s not until they are close to death that I feel like I can step in. Thats a place I can actually do something other than remind them of how horrible the future is.
Because I can’t save the babies being diagnosed today. So I turn away because its just too hard.
I would never have read from anybody that wrote like I do not long term thats for sure .. I might have read once or twice.. made a donation and ran like hell. I would have scrolled past other friends updates in fb.
.. and I am so angry …
…until there is a cure..