train is coming

Her birthday is coming. Like a fucking train. I am staring at a train, barreling right for us and I cannot get us out of the way. I want so desperately to make it a celebration for her .. for them too.. But I don’t know how.

I am crippled from the pain right now.

I feel like a failure. I couldn’t keep her alive. And I can’t feel joy in the blessing of 6 years with her. All I can see right now is the nearly 1 year 8 months I have endured without her.

Dear God… That’s a long time.

no. no. no. It can’t be real.

I think maybe this all started in counseling.. When Tony said something had been changed for 5 years.. And my immediate thought was no. No. Maybe 1.5-2 yrs at most.

But instead I just started crying. Because he was right. Because 2 years was when she was diagnosed. When this nightmare began. So he was right it was 5 years ago.

her 6th birthday.. the day we learned about DIPG..
her 6th birthday.. the day we learned about DIPG..

Nightmare. Perfect description. Because none of it seems real. Part of me stopped living .. growing.. the moment she did. So I have no perception of time anymore. I think everything was a year and a half .. maybe even two years ago.  And I don’t want to wake up from this nightmare..

Because waking up would make it more than just a dream .. it would become reality. 

It’s why I can’t picture her older than 6.. It’s how incredibly and mercifully my mind can bend and flex to imagine her with her siblings.. even though in a few weeks her younger brother will outgrow her.

Because a piece of me wants to stay asleep.

Content to stay locked in my nightmare of a sick.. of a dying daughter. Because the reality of a dead one is simply too hard. 

I still can’t believe that something in my life happened thats so horrible that my daughter having cancer is better than reality.

But it has. She was here… but she isn’t anymore. Today I was just suffering with the weight of that and her birthday approaching..  Then I was on Facebook  and I saw a lot of  #forthembecauseofher postings by people.  Seeing what fun parents and kids are having together and I thought of her..I thought of what we might be doing together if it was somebody else and not me.. not us .. not her.

She loved to paint her face.. I think I would have let her paint mine however she wanted. .
She loved to paint her face.. I think I would have let her paint mine however she wanted. .

But then this picture below popped up and it hit me..

Its perfect. Its her right now. Above us and looking down. Full of sparkle and pride. She is happy to be witnessing these simple acts of joy and love for her birthday.  Thank you. For helping me give her something for her birthday. ..

watch us.

eight things baby.

for so many them’s

because of you.

DSC_0003…until there is a cure..

 

6 Responses to “train is coming”

  1. Jennifer’s spirit is too boundless to ever not be. I don’t know how, but I know she’s experiencing love and brilliance in a way that we cannot comprehend right now. Sending you love, always.

  2. I will always think about Jennifer and you and Tony and the kids and and how your pain has made me a better mother to my own children; made me appreciate them in a way that is more real than it was before. The loss is too great a sacrifice to go unrecognized. We all have been touched by it and it has shaped who we are. You’re family has shaped the parents and families we have. Her influence knows no end.

  3. I often think about you and your family and Jennifer. Your journey has touched so many, including myself. You are an amazing person and an inspiring mother, sharing your story and spreading awareness about pediatric cancer research and funding. I never knew the statistics– I never paid attention until I came across your blog– a friend had shared a post on Facebook which was the first I’d every heard about you. That was two years ago and each week I continue to log on and catch up on your blog, your facebook updates, writing letters to government reps regarding funding. I have two small children– a son (4) and a daughter (2). I’ve changed the way I parent because of you…..because of her. I can’t count how many no’s I’ve turned into yes’s– how many times I’ve told others about Jennifer and how she has so greatly affected my life and I’ve never met her. The only tie I have to you is that I live in Sacramento— where your journey of motherhood began. All in all, I’m writing to say that your Jennifer is forever in our hearts and you are forever in my prayers. <3 from Sacramento!

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