lessons from above

It’s always amazing to me.. how things seem to happen. I desperately want to meet her again in my dreams.. so much so that I think I miss the ways I can see her in my day to day..

Especially right now. I just miss her so much that everything hurts. And to exist.. especially around other people takes a lot of work. So I avoid it. But I worry it will push everyone away. .. So then I move through it and go to social occasions… I find my humor becomes very dry.. And I worry .. will I push everyone away?

So really the fear is that my struggles will leave my whole family alone. And its overwhelming.

I am overwhelmed.

Today was a wake up and cry in the shower kinda day.. Covering my mouth trying to stifle the sobs that are racking my body.. hoping the kids keep playing and don’t come in the room..

Where everything inside me just aches for my daughter.

A day where I just simply don’t understand how I ended up here.. How this is really my life.

I dreamt last night.. I can only remember bits of it foggily.. But I know I was trying to find my way to her. The her now. This reality. I was trying to find a way to connect to my daughter .. I remember who was in the dream. A girl I went to high school with who as an adult died from a brain tumor. I remember seeing her. Talking to her and asking her some of the questions I am so desperate to have answered.. but I can’t remember what she said back to me.

Its like my brain is locking it away from me.

Why?.. I am still wondering and questioning right now. Why can’t I remember what she said?

Still I woke up ready to try. To make this a really good day .. It seems those days are always my worst ones. Perhaps it’s a theme for this time of year.. One year ago.. 

Today is the 19th. A day I so hopefully .. and maybe even foolishly dubbed pillow fight night. .. Here was our first..

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It was our final night in our little home away from home apartment. It was the last night where I knew tomorrow held a plan to fight for her life still. Our final day of radiation .. Our final home day as she called it.

 

I used to give her a little something to open up every Friday. .. A little something to look forward to on completing yet another week of radiation. ..

..your brain. My God. We radiated your brain day after day for 7 weeks..

his face.. how deeply he loves his daughter
his face.. how deeply he loves his daughter

That final day her gift was too big to fit in a box.. Her Daddy.. She so happily ran to him. She gave gifts to all the staff she could find that helped her day to day.. The drs of course but also the security and valet.. and my favorite, the man at the gate to let us in.. The one she dubbed “smiley guy”

She had made him a card.. Told him her nickname for him.. I wonder if he knows how I still think of him.. I wonder if he knows she died?

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That final night was a bittersweet one for me. Because I had to return her to the rest of the family…. To go home and share her again.. So I soaked it all in. I laid with her and talked. I rubbed her legs and feet just a little bit longer.

And we had a pillow fight.

Late at night as I blogged.. I thought I knew. I thought I had any clue how hard surviving without her would be. I thought I could imagine it.. just a little bit.

I had no idea. It is so much harder than I ever imagined. ..

In 6 days another Christmas without her. As my surviving kids joyfully count down the days.. It feels like the invisible noose is getting tighter and tighter..

Today it was hard to breathe.

I feel like clawing at my neck.. desperately trying to loosen griefs grip .. Its impossible.

I am heartbroken and heavy. I am struggling.. A lot.

I push through. I am fighting to give my living kids the memories they deserve.. But its hard. And getting harder..

I want to sit in the corner. It feels like part of me is screaming . Jennifer.  She isn’t here. Don’t you see. She is missing.. She is missing.

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I am drained after every group event. Like incredibly drained. My internal bellowing and outward smile is exhausting. Its fairly incredible the physical component of this level of grief.

This tearing apart from the inside out.. its a self imposed prison. . A solitary confinement. .. or so I thought..

Sorry sissy miss.

 You’ve been here though huh. Trying to reach me. Tell me you are here..

 Watermelon candy and taco t-shirts. .. and the people.

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. . . The people she touches and communicates through. . Somehow I know she is the one that moves them to text me at that moment.. or send to my front door to help me. .. some she sends in my dreams..

I think maybe she is learning.. getting new abiltities and ways to reach her mommy.

I am writing this now. In the middle of the day because she sent me help. A friend showed up and asked to take the kids on a bike ride. I am not a “show up at the door”  kinda person anymore.

But I have no doubt. . I don’t know the dream. I don’t know .. I don’t understand it. But this. This right now I know. I know Jennifer sent her to come do what she can’t. To just help me. To help them.

So now I can write and cry..

and cry

and cry.

To give me just a little bit more space. And make me a better mommy.. To give me the strength to get through two social gatherings today.. The first. A pillow fight with friends in her honor. So aloud I promise her.. I will go. I will try.

for them because of you.

look down on me baby

be proud.

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…until there is a cure..

 

 

 

 

 

 

 

9 Responses to “lessons from above”

  1. Still reading…still crying with you. Your strength, even when you think you don’t have it, amazes me. <3 <3 Sending all my love..

  2. Was so excited to see a post from you and so sad to know how much you are hurting. I wish I could say it will get better, but I can’t. I know better from watching others…..I never wanted children for the fear of what I could pass on to them. And now I watch my seven year old for any devastating signs!

    I hope you find something Merry out of this season! Hugs! LOVE4JLK always!

    Janeel

  3. I wish words of comfort existed…I wish words were “more than just words”. But they aren’t, so all I can say is “I’m sorry”. Not just sorry, but “active”…because no mother deserves to live a life of agony as you are having to do. It’s so gutwrenching to read the amount of pain you are in, emotionally and physically.

    I imagine it is probably hard to allow people to read your most painful thoughts sometimes, but I am thankful you share your feelings…I hope it is relieving, even just a little, to “let it out”. I think of Jennifer (and you) every single day of my life, as I have for 3 years now. She is my reason to fight, to advocate for pediatric cancer…she is the reason I will never give up pushing for the cure to DIPG, and all other cancers. I promise to always say her name. But I wish there were no reason to…I wish I had never had to find your blog…she should still be alive damnit. I’ll never forgive the world for failing her. And you. And Tony and your living children.

    I’m so horrifically sorry.

  4. Today, in the car, driving through the Christmas shopping madness, this song came on the radio. I had no reason to pay attention to it, normally its not the kind of music i wouId listen to at all. For some reason, Jennifer popped into my head and i hear the lyrics about heaven. I had to look the song up, it’s called “in your heaven” by Carrie underwood.

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