honest

Its so hard to try to get into a childs mind…to understand or even know what they are thinking. I want to anticipate Jennifer’s needs and fears but the kid sometimes seem to be coming out of left field. We got into a extended stay apartment today but she didn’t want to come. She was so worried about what it was going to be like but I couldn’t understand what about it was causing her concern. When we got here she went in with my Dad and came out to the deck and yelled to me that she likes it. YEA! I am excited for it too. I am hoping this will provide her with some sense of normalcy and stability. Another bit of good news is I got help from the right people at Stanford and they got a frying pan to make eggs for her and put aside some fresh fruit.

IMG_2731Fruit and eggs is what she wants every morning for our breakfast with “the cuddlier” (the family member that comes to snuggle Charlotte).

With her celiacs she couldn’t eat the eggs that were prepared because they were being made on a shared griddle and the fruit had too much potential for cross contamination being out on the salad bar. She never complained about it but asked daily for eggs. I was a little giddy over giving them to her this morning. Its those little moments…seeing her big huge grin spreading across (her now puffy from steroids cheeks)…over something so simple, its what keeps me going. After some down time at our new place we went back for her oncology appointment. We played a little trick on her dr saying she had a problem with her tongue, but really we had just learned she can fold up and she is quite proud of her skill. IMG_2702I have so much respect for the people we are interacting with at Stanford. Everybody there has been great and treated us well. In every department they are taking the time to get to know our family.

For JLK though its her oncology/radiology team in particular…I don’t know how they do it but they put both of us at ease. I trust that she is being well cared for and so does she. Jennifer has acquired a “tell” that she is trying not to cry. I have mine too, but I am a adult my 6yr old is just supposed to cry..not develop a way to fight back the emotions…I noticed today she was a little upset in the appointment but instead of relying on her tell she allowed her emotions to come in. I am glad she is finding comfort in these new relationships. Since we are nearing the halfway mark I talked to her doctors about the steps to get her into a trial. I found out though that we are hoping she wont be eligible for a trial right away. She will get a follow up MRI 4 weeks after radiation is done. That scan will tell us if the radiation helped to shrink her tumor…gifting us more low symptom time with her. If it has we just plan another scan for a later date.

If not….if its grown then she would be ready for a trial. So our hope is that she is not eligible for a trial for a long time. But hearing that made me feel desperate. I already knew there has been no progress with DIPG in 30yrs..but somehow this time it sunk in. There aren’t even clinical trials until she starts to tumble downhill. So we aren’t looking at options that just might be the “one” the cure…we are testing and trying…stepping stones to finding something that might actually make a impact.

Could a miracle happen? Yes of course. But I cant let myself believe in that. Because if I do….and we don’t get that miracle…then what?

I need to do what I can to preserve my faith in this time. Because if I lose that then I lose her forever. Without a God and a heaven she will just be in a box…I cant…I simply cannot even begin to go there… Its such a fine line for me though. When people say “have faith” it does not resonate well with me. Have faith for what? That she will be spared? Or if I have enough faith maybe thats what can make this nightmare go away? I know logically thats not what is meant but its how it sounds in my head.

Then where is my faith right now? Well its disconnected from all of this. I try not to pray for the miracle or her to be saved, though of course with every beat my heart is pleading… I am trying instead to find Him in our moments. Finding all the things in this journey we have to be thankful for. A huge portion is so glaring…its the people. The ones who are medically taking care of her and the ones that are taking of the rest of us. The outpouring of love and support and people extending themselves for my family. I am thankful.

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But there are so many more little things I catch along the way. The timing of this. We found out her prognosis on her birthday. Being told your daughter likely wont see another birthday on her birthday is vile…But because of that we got to throw her a awesome party. One day later…we would have missed that opportunity and never be able to get it back. Its hard to have this all butting up to the holidays…but then again we know going into Halloween, Thanksgiving, Christmas and New Years the likely hood of them being her last ones. These are good things…I am thankful for them. Another child finished his radiation right before we started so we slide into the first time slot which has worked out well for us. Having a 5/6 month old traveling this
journey right along with us means we get the cuddlers which is something she looks forward to every day.

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For me this is where my prayers lie. Trying to just be thankful for the moments and gifts we are given through this journey. I know at some point I will have to confront the dark and the angry with God but not right now. Right now I am dealing and working through the dark and ugly in me. Part of it is being raw and brutally honest in here…my written word…my release. And I am ok with that. Today I find some level of peace in that. I cant speak for tomorrow but only for today…

I share this because I want people to know what its like for me. I can’t tell you how it is for anybody else in this ragged journey of a parent losing a child but only my own story.  I can only imagine what its like for people to see me and read my words. You want to help, but not overstep. You want to know but not pry. You want to cry and yell but worry you will upset me. You won’t. I cannot possibly hurt anymore…(thats a lie isn’t it…we all know I will hurt much worse)

I see the reactions…sometimes almost like I am a ghost. Frightened. And I know the thoughts you must have.

Thankful too…that you aren’t me…that its not your child. And thats ok to admit.

Because if Im being honest…

Really really terribly honest…

I wish it was.

11 Responses to “honest”

  1. We continue to pray. I have often asked what “have faith” means too. I don’t know but I do know that we have to rely on more than what we are. I hang on your words… thank you for sharing. I work with bone marrow transplant patients.. and have seen and heard many sad stories. Yours is different though. It has touched me deeply and it is changing me as a mom to my girls and boy. I sort of feel like as an adoptive mom I was immune to tragedy. For gosh sake’s… we work so hard to have a family and we trust in God’s will… we couldn’t be tested again? right?? Ugh. I am grateful that you are allowing so many of us to learn the hard lessons through your journey. The gift you and JLK are giving people like me can’t be measured. May God bless both of you.

  2. Be terribly honest, I’m so THANKFUL you have some sort of safe place to release all that is inside. I won’t even begin to say I understand, cause I don’t… But the part about faith and needing to believe you get to be with her again. I totally totally get that. It’s the reason I can’t have those types of faith vs. no faith conversations after my Father’s passing… I HAVE to believe that I can and will see him again. For myself I don’t believe for one moment God chooses anyone for this horrible journey, I’m not sure how or why or what does.. I just think God and faith is there to help carry you through it. I hope you get to hold tight to that hope that no matter what you and your sweet girl get to be together.

    Hugs always <3

  3. I am sorry you are having to go on this journey.

    I am not sure if you are aware of either of these resources but the first is Gabriella Miller’s family, she recently passed away after an 11 mo battle but was a huge “face” for DIPG. The other is Erin Griffin’s awareness website. She is neaarly 2 yrs post dx and symptom free. She is in a gene therapy trial in AUS but perhaps she is aware of more global efforts that would not require a decline to get in (which of course is crazy 🙁 ).

    https://www.facebook.com/pages/Smashing-Walnuts/489751111047045
    https://www.facebook.com/ErinGriffinRaisingDipgAwareness

  4. I am so glad that you’re being honest. I’m so glad that you feel safe enough to be so honest. I am so glad that you are making the most of your days. You (and your whole family) are a near constant in my thoughts and I am keeping you close to my heart.

  5. Your gratitude is inspiring Libby… Praying everyday for more time and peace in your heart, in the moments and in your future… Hugs…

  6. Libby, your writing is incredible. You are so incredibly brave, and I’m glad you’ve found a way to try to take care of yourself in this awful situation.

    You and JLK have all of my prayers. Love and hugs for you and your family. ❤️

  7. This is so, so hard, so unfair. When you get a chance, read the book “Heaven is Real”. A young boy went to Heaven, but then came back when he was medically revived. He talks about meeting his sister (his mother had a miscarriage and her son never knew this) and building a house in Heaven for the rest of the family. It made me feel so much better after reading, knowing how awesome Heaven is and that we will be okay. Thank you for being honest and real. I am so sorry you have to go through this. It’s okay to be mad at God, I am sure He understands.

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