santa

She will always believe in Santa.DSC_0035

This weekend we got to see Santa (shhh for her it was the 2nd time). and it struck me. Jennifer will always believe in the magic of Santa. He knew her name and even remembered what she had asked for when she saw him at the mall. The joy on her face was priceless!

The pureness of my childrens belief is what makes this time of year extra sparkly again for me too. To know she will always hold that twinkle in her eye for Christmas is nice.

I think so much about what she will miss out on…becoming a mom, a wedding day, driving a car. But the realization she will always believe in santa made my thoughts go the other direction. She will never have a first heartbreak, or be broken up with. She will never get teased at school or fail a test. No shaving cuts or eyebrow waxing. She won’t have to hold my hand when I die..I will hold hers. Though thats simply unimaginable for me…it means Jennifer will never know true sorrow.

IMG_2853 Today after a uneventful treatment we had made plans for a girls date to the movie theater to see Frozen. I had no idea what it would be about but it was all about the sisterly bond.  I did quite a bit of tearing up in the darkness watching it with my two girls. During the previews there was a movie I thought would be fun to take JLK to see. Then the release date of August flashed….and I reached for her hand. Just to hold it and feel its warmth helped me let that pain pass over me.

We got there early and found a photo booth in the lobby area. Another new experience for us in the books. She really wanted to put the money in herself. Because of her double vision she couldn’t tell where it should go. Luckily she let me help just a bit and got it in.

She had asked me this weekend if we could bake muffins for her IMG_2851doctors and nurses so this morning we brought them in for both her radiation nurses/drs and oncology after that. She was so excited to give them something she made and share a little piece of what she loves with these people who we have all grown so fond of. We all trust them. Tony and I and Jennifer. I am so glad we live close enough to Stanford to be at one of the best clinics in the world and still go home on the weekends…Of course I still worry about her…and the choices we make and will have to make…But I do have faith in the people in charge of her care.

At todays clinic appointment the drs noticed she was starting to utilize her left more than her right which is what was also making her struggle in IMG_2861the photo booth. (I need to get her to write her name and I love you to all of us)  And today I didn’t want her walking without holding my hand. It might be she is just so tired…or maybe the tumor isn’t responding to treatment…Nobody can know. And that is so hard for me. To wonder if we made the right choice with radiation…what if she is in the small percentage that it doesn’t help and we have lost 6 weeks to treatment versus being together? But the truth is this is the choice we made…we aren’t even considering stopping the train…but I cannot seem to stop the what if train either.

What is it like in her head? She seems to take it all in stride. Without a single complaint she has just naturally started using her non dominate  hand. She constantly amazes me and makes me strive to be better. I would be complaining right away if I….geez…I just realized I can’t even type that sentence because I have no idea what its like for her. Does she feel weak? Does it just not move properly?

Does it scare her? This whatever it is that is happening to her…is she starting to know what brain tumor and cancer can really mean? In the room next to us a child was violently throwing up and we talked IMG_2845about chemo and how some kids get that treatment. That it makes them lose their hair. I told her she wouldn’t be like that. Though she is now losing enough that its noticeable…she still wont be chemo bald. I asked if she had been scared of that. She nodded. I looked her in the eyes and reminded her she can ask questions if she has them.

Then we talked about heaven. We were gifted a book that simply talks about heaven being real, not about death and dying just about how awesome heaven is. I read it to her. She cried. She doesn’t want anybody to go to heaven…but she couldn’t explain why. I told her the truth as she needs to know it. We will all go to heaven. Mommy, Daddy, Jonathan, Coco and her friends..She will go too. But we don’t know when. We have been talking lately about what heaven might look like and smell like. But today she couldn’t.

Today she cried and my heart broke because I didn’t have anyway to ease her fears. She needed to feel it and I needed to let her. What a bunch of crap that is…needing to let my 6 yr old be scared to die….But we did it.

Tonight when I tucked her in she asked for her book about Jesus and heaven. We read it. Then a few other books and I rubbed her feet to help her relax. we didn’t talk about it. But I think the same way things settle into a new place for me….today her little mind settled too.

She will always believe in Santa and maybe he is in her heaven….

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11 Responses to “santa”

  1. Oh, Libby. This is such a hard journey you all are on. My heart aches every time I read your entries. Samantha and I have been praying for you guys. She was asking me if Jennifer believes in Jesus because she wondered if she had Him to pray to when she was scared or hurting.
    There is a CD that I’ll drop off at your house. It’s called “Hide Them In Your Heart” and is verses set to music. Samantha has listened to it for years at bedtime. If she wakes up with a bad dream, she’ll turn it on. She has other CD’s but always go back to this one. Maybe your children will enjoy it too.
    love,
    Lisa

  2. Libby,

    Every post you write is so amazing: real and honest. You were never one to “sugar coat” things, so I expected nothing less in your writing, but it all strikes me as authentic and true. The questions you pose and the feelings you have are deep and from the heart and so unbelievably vulnerable. I think people that read your posts can feel your grief and hope and deep sadness and your unrelenting love. I know I have no words of comfort, but I am in awe of you. I admire you and I am thinking of your family all the time. Jennifer is so blessed to have a mom like you. We are blessed to share in the journey even know I think it is so unthinkably sad. You are reaching people and changing people. Jennifer is changing people – for the better.

  3. All your journal entries strike a chord in my heart, this one especially. The hope, doubt, fear and sadness all resonate so much. It brought a small smile to my face as it brought me to tears. You have made your families struggle a gift to all of us- to be inspired by. It is truly incredible. Sending even more love and prayers through the holidays.

  4. We have never met but I want you to know that I think of your family often and your precious girl and I am inspired by your strength. Your beautiful journal entries linger in my mind most days. Praying for JLK!

  5. You are an awesome parent and loving person. I’m praying for you all. I’ve asked my mom’s group to please follow along, pray and donate if they can. May God continue to provide you with the support from friends and family, as well as showing you what you need to do or what to say to help JLK.

  6. My heart breaks for you and your family. I just keep praying for Jesus to give you guys a miracle, comfort, peace and happiness in the days to come and forever more. You are an amazing mother. Virtual hugs.

  7. I truely believe you were given this little girl for a reason. You have the remarkable abiltiy to see the silver lining. I am happy you and your family have this time with Jennifer and make the MOST out the moments you have. Reading your posts inspire me to walk a little slower with my kids to touch and feel the crunch of frost on the grass. Your love for JLK is expanding and being sent out like shockwaves through many, many families. I am hoping and praying your family experiences many more.

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