change

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I am not a tech savvy mama…not by any stretch of the imagination. So me learning how to put pictures on the blog is quite an accomplishment. In doing so I have found myself lost in pictures of our kids…pre-diagnosis. Its like I don’t recognize them anymore…we are all so different….so forever changed. I remember the way it felt back then…but it still feels like I am looking at a different family. I never thought anything could shatter the 6 of us so quickly. We are changed.

I look back on the week leading up to her starting kindergarden and me crying. The night before I got into bed with her and just held her and cried into her hair. I was scared for her…and for how the rest of us would manage away from her a whole 6 hours a day. I desperately didn’t want to let her go…in all senses of the word. I was so “stressed” about getting all 4 kids ready and out the door. I realized that since I became a mom Jennifer had been with me nearly every moment and that was changing. Oh my sweet baby girl.

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And now she is gone from her school. We went back to visit the other day. We met the new girl in her class. The girl that is taking her spot since she will never be filling it again. How is the happening?

We are getting so much support from her school, a place we were at for a little over 8 weeks. I am in awe at the support we are getting from all around us. Hearing the story of our daughter being passed around and people opening so much of and from themselves to help us in our time of critical need. On one hand I love it and appreciate it and I want to tell you all thank you from the bottom of our hearts. Our cup truly runneth over and please hear my thank you…But the other hand wants to just slap it all away. Because it makes it all so real. People caring and giving makes this more real. I know I am saying it over and over again but as I release in here…in my journal…the words that I am screaming from inside is still no…please god no….

Yesterday at the hospital I heard JLK singing a song…”shrink tumor shrink”…I think thats the chat her body is calling out over and over again. So in the bathroom at lucille packard we danced and sang to her song…”shrink tumor shrink”. Its the last thing I whisper in her sleeping ear when I leave her for radiation treatment.

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I love that she is still so full of innocence while experiencing things 6 year olds were never meant to. How she is able to take such a debilitating word like tumor and make it beautiful is magic.

She has changed a word that has made my mouth go dry and my hands go numb into her heart song.

And something we can dance to.

 

11 Responses to “change”

  1. Oh Libby my heart goes out to all of you. Your blogs mean so much to all of us. Thank you for keeping us updated. We all will be singing JLK’s song and praying the tumor will definitely shrink. You all remain in our prayers. Give JLK a big hug from Noni. Love you.

  2. The image of you and JLK dancing and singing “shrink tumor shrink” in the bathroom is such a sweet image!

    As I read your blogs, I can’t help but wonder how I would fare if I were faced with the same situation. I don’t think I would be doing half as well. We are thinking of you and your family every day.

  3. Your posts help and remind me to snuggle with my 3 children a little longer than I normally would. To forget about the “stuff” to do until maybe they are asleep. To have a dance party in the living room. To take a nap with my 4.5 year old (firstborn) when he asks – OK, yeah, I can do that. And it’s really nice. To forget the impatience I may sometimes have at their slow or loud or frustrating child-like ways and just smile and enjoy the moments. And be forever thankful and rich in gratitude because today, they are healthy. Today I am so lucky. Today, today, today.

    I am so sorry that this is your world right now. I know everyone reading this wishes they could just snap their fingers and wake your whole family up from the nightmare. We would do it if we could. Your daughter is so sweet and precious. Shrink, tumor, shrink.

  4. I read this last night and woke up this morning thinking of Jennifer. She crosses my mind a thousand times during the day, and I usually say a quick and silent prayer for her, you, your other three, your husband, extended family, doctors, etc. Today though, every time I think of her, I pray, “Please God, shrink that tumor,” in honor of her sweet mantra. So that’s my prayer for you guys today.

  5. Praying for your family daily. I can feel your emotions through your words. So honest… So heartbreaking. Thank you for sharing through your blog. It is a daily reminder for me to cherish my son and my life in general. You have changed my life forever.

  6. I’ve spent most of my day reading your blog and I just can’t tell you enough how amazing and brave Jennifer, yourself and family are! My prayers are with you in this difficult time! I pray one day there is a cure and I promise we all hear you, little JLK has made such a difference to many of us!❤️

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