so much has changed

Bridgette is 5 months old.. Thats how old Charlotte was when our lives began to crumble. ..

Today is hard.. I just woke up hurting and wanting.

And mad.

I went.. as I always do in the morning, to a place Tony and I both call wonderful torture. The “on this day” option on Facebook. And I saw the picture of my Jennifer with one of her very best friends. They were wearing the matching pink minnie shirts Jennifer picked out for them in Disney World.

I smiled. Remembering how the girls were so serious about trying to match everything. Same color hair things.. and boots and leggings and blue skirts.IMG_0842

I smiled at how happy she was to be back at her preschool even though she should have been in kinder. How we gave her the choice of where to go .. and she gladly chose Ms Sandy with Maddie there too. And how I barely made it through letting her go there.. except that it was Ms Sandy.. with Maddie.

And I looked at how much had changed in that picture.. but also how little. And I started crying.

Angry bitter hot tears.

Jennifer hasn’t changed for me from that time. She is frozen as the little girl in that picture.

..so little has changed.

But Maddie.. that shirt that was so big on her .. purposefully big so it lasted. . Now I know it barely fits her anymore.

…so much has changed..

I remembered the rest of the day. Taking her to a dr appointment. Hopeful. Everybody had hope. We planned for her first follow up MRI. Hoping the tumor had shrunk from her weeks of radiation. But at the very least stayed the same.

.. time .. time.. time..

I just hoped for some time with her. No. I counted on it. I banked on it. 9 months average life span for DIPG. Somehow I just never really realized that for some kids that meant far less than 9 months.

They told me I couldnt know the results of the MRI for almost a week after we got it.. not until the next clinic visit. I told them no. No. I needed a call. I couldn’t wait that long. I warned them I would find out where they lived and show up. .. I think they knew I was just crazy enough to do that.

They did call. And I am glad they did. Because 2 days after the call when we went for that clinic visit she was already starting the process of actively dying. It seemed to start right after we got the call. .. Like she was just waiting for us to know. A weight seemed to be lifted off of her within moments of us knowing.

we knew.. so you didn’t have to keep trying quite so hard..

My sister was with me that appointment day. Its amazing how the same day.. the same hours can feel so differently for two people. She loves this day.

Walking was hard and tiring.. So she was in a wheelchair. We didn't know it at the time but it was the cancer that had spread down her spine.
Walking was hard and tiring.. So she was in a wheelchair. We didn’t know it at the time but it was the cancer that had spread down her spine.

I hate it.

Because we went to my nephews wrestling match. I remember calling Tony.. knowing he would want us to come home so he could see her and have dinner with her. But also knowing he would never say no to us asking to stay.

Another night I stole from him.

He doesn’t read my blogs anymore.. But I will ask him to read this. My public apology. My public gratitude and acknowledgement for how much he loves us.. and the sacrifices he made.

Im sorry Tony.. For both of you. I am so so sorry.

He carried her around so much of our Make A Wish trip. The love between these two.. you could feel it being around them.
He carried her around so much of our Make A Wish trip. The love between these two.. you could feel it being around them.

Damnit. I get so mad. These moments. These mistakes they shouldn’t be allowed to have such a hold over me.. But I don’t get freedom from them.

Because when she became forever 6 our lives together stopped. Who we were got frozen in time then too..

Barely 6 years of mistakes and successes. .. not enough to look back and embrace the good.

She wore her minnie shirt to bed that night too.. This was us the next morning. How I loved to wake up next to her sweet face and stinky breath.
She wore her minnie shirt to bed that night too.. This was us the next morning. How I loved to wake up next to her sweet face and stinky breath.

And I just miss her. Her laugh. Her smile. Her eye roll. Her life…

..  her death.

We are entering a sacred time for me right now. The time that I ushered my daughter over.. Two and half weeks it took. As her body shut down.. one ability at a time..

My arms physically ache for her right now. I sometimes can’t believe how physical the grief can be. How I can feel the pain in my heart. Feel the emptiness in my arms … an undeniable urge to just reach out..to her.. for her.. over and over again..

oh baby girl

so much has changed.

and so much

hasn’t.

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…until there is a cure..

 

5 Responses to “so much has changed”

  1. Libby, Your post takes my breath away. I am so sorry for your sorrow, heartache, and the loss of your precious Jennifer Lynn. It’s unimaginable the grief you and Tony are living with. Thank you for foundind “Unravel Pediatric Cancer” in Jennifer’s memory. God Bless. 🙏👼💞

  2. I know that nothing can change the guilt you feel, but I pray that one day, hopefully soon, you can overcome it and forgive yourself. You had no idea that DIPG would steal her so soon. Nobody can look into the future, but hindsight is always 20/20. You spent precious time with your daughter, the same thing I would do put in your shoes. You didn’t know that Tony wouldn’t get that extra time to make memories with Jennifer. You took care of her, took her to appointments…you did your mothering duties beautifully, even when it hurt your heart. You gave her beautiful memories. Please don’t let the guilt eat at you…you have done nothing wrong. I hope that you can forgive yourself from whatever is bringing you guilt. I’m almost certain Tony understands, and I know that Jennifer does. Sending you so much love…

  3. Everything that went through my mind to say was covered by Melissa, thank you for all those kind words Melissa!
    I’m so sorry for your pain and guilt, hug your husband because I’m sure he knows!
    Now- read Melissa’s comment again because she said it all! Hugs and warm thoughts to you and your precious family, hope for continued healing for all of you! 💕

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