piece

I have been sitting her for well over an hour…I don’t know what I want to write but I know I want to write….

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We had a holiday party with the Bass Center patients (childrens cancer) but I will blog that later since all my pictures are on my camera and I don’t have the cable to get them onto my computer.

Yesterday hospital time was not so good. Friday they cancelled her treatment and Monday was a struggle big time so they cut the mask, Tuesday no issues so we figured we were home free. I need to learn not to do that. I know nothing right now…everything is always up in the air. Even cemented plans can crumble in the blink of a eye now…Its our new normal. Post hospital time with the boys was great…but thats to be blogged later with pictures.

Today Tony and the boys were with us for the first time since they spent the night here after the party. Before we went back I asked to speak to the head radiologist about Jennifer and the struggles thy were having when she was sedated. Its scary to hear your child is struggling to breathe…but at least now they can fix it…when the damned tumor regrows breathing difficulty will be a growing enemy…I wanted to avoid it happening again and again if possible now while we have the opportunity to control it for her. We decided to go ahead to try to treat today.

After a long wait for her and Tony and I exchanging a lot of anxious glances they told us she was in recovery and Tony headed back. I asked him to text me if she got treated or not. And sent him with a little note of questions for the drs. He texted she got treated but no drs back there. I will be honest in saying I was disappointed…we knew there had been issues but didn’t know what.

Later in the day though the dr did call me to discuss and apologized for not coming to speak with us immediately. They are busy…lots of kids to be saving…so we are ok with it! She did in fact get radiated today but it wasn’t optimal. They changed a few things…she explained it to me but to say it was over my head would be a understatement! She also said we need to do a whole new set up tomorrow. Basically starting over for the remaining 10 days of treatments…re-measure…re-set the beam….re-postion her and re-make the mask. Hopefully this is the trick to help her breathe and be safe throughout the remainder of therapy. That also means no radiation for her tomorrow and another day added to the end.

That added day would put us leaving for Disneyland on the 20th and coming home on the 23rd. Too close to Christmas and too busy at Disneyland. Tony and I still have to decide for sure but its looking that way especially since we don’t know if she will be cancelled again.

I am disappointed. I am frustrated. Our tickets are refundable but only to be used towards airline tickets for the people named. I don’t know if my daughter will be alive long enough to use hers. So we are talking about going 2 days after Christmas…I am re-learning every day not to plan…really anything…what the morning starts off like is often nothing like the evening endings. My over planner self is trying to hard to go with the flow and be in the moment.

Its hard to be in the moment with 4 little hearts we need to be caring for though. Having the boys here was so very good for Jennifer. We aren’t so sure it was good for our boys though. Jonathan has always been one to struggle containing the intensity of his emotions…We actually started him with his “talk doc” a few months ago and he made huge improvements…now we are noticing a big backslide. Nicholas is having accidents. That may seem very age appropriate but its not Nicholas appropriate. Its just not him.

This is why we wanted to do Disneyland before our Make A Wish trip to DisneyWorld… We realized if we went to DisneyWorld with all the kids first we would be so hard on the boys. That if they wanted to go on a ride or anything really we would be frustrated since we would want to do everything Jennifer wants…Its hard to admit that. How we couldn’t just be appreciative of the time we have on a amazing and generous trip for our family of 6.  Its the truth though. Its something we as parents to 3 healthy children and 1 dying child are trying to navigate. Alright honesty time…I wrote 2 healthy boys first…I get so caught up I almost never mention Charlotte. How’s that for some high quality parenting. She is just so apart of me right now…like a appendage…I hope thats o.k for her.

How am I supposed to juggle all these different needs and wants in such a critical time? Its different then the juggling I have always been lucky enough to do….this matters. It really really matters.DSC_0066

And then there is my husband. And my mom and my friends. I want so badly to be there to do this right for them too. Even typing this I worry about not mentioning my brothers and sisters…and nephews etc….I don’t want to let people down or disappoint. I want to express the love and sorrow my heart is filled with constantly for those caring about me about us…. There simply aren’t enough hours in the day.

Its why I try to not put pictures up of anybody beyond our 6…but think about it all the time.

This blog is helpful for me. I do need to do it for myself. I will admit though when I miss days I feel guilty. I know people..ummm I dunno if enjoy is right…maybe appreciate my writing our story. With all that is constantly being given to us I feel this is my way to give back. This is my way of helping to support my family and give my husband a bit of breathing room.

Tonight though I feel weighted with the enormity of it. Not JLK…thats a weight beyond explanation…but the weight of my desire to do right by all those around me. This sounds awful I know….but its so many people I don’t know how to do it. I am so grateful…this is a lucky problem to have I realize that. But tonight in my little apartment with my two sleeping girls I feel like I am balancing a house of cards and I am no engineer.

I can’t fix the pain I see in peoples eyes for my daughters struggle so on most levels I can handle that. But feeling like I may disappoint or hurt those that are loving me so hard…thats too much to bear.

I know how insane and backwards this sounds outside of my head. This might be my first journal to go unpublished….

And then I look through pictures and I come across these and I think…DSC_0096

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How are they ever going to be ok without her again? They adore her. They need her. They need me. A piece of their mommy and daddy will go with her…forever.

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….and I just realized. A piece of them will go with her too. No.

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None of us will ever be whole again.

16 Responses to “piece”

  1. My darling Elizabeth….This is my first reply to any of your posts but, as the Tribe Elder, I have to speak. There is no doubt in my mind that I am representing all of the Scharrenbergs and all of the Calcagnos when I say that we love you — and Tony and Jennifer and Jonathan and Nicholas and Charlotte — beyond all measure, unconditionally and forever. I so wish that our old childhood game…when I would let you and your siblings “squeeze the pain into me” would work now. But that sweet magic just cannot wipe away this grown-up pain. We all wish more than anything that we could take this burden off your shoulders….but we can’t. What we can do is to try to spread the pain thinner with each of us absorbing a little bit of your agony. I hate what is happening…but I need you to know this: You and Tony are my heroes. Love, Mom

    1. That is so totally Mary!! And Elizabeth. . .I have no doubt that every one of your family members and friends is not looking for your thanks, acknowledgement or anything else from you right now. They just all want to help in any way they can in an attempt to lighten your load. Truly believe they all know you are appreciative of everything they are able to do to help you, Tony and ALL 4 of your adorable children. Give yourself some slack. . .you are an awesome mom to all your children and will continue to do the best you can! Sending more love and prayers. . .

  2. I see how this writing for you is cathartic. I was introduced to JLK and your story in the middle of November. I read every post you write through my tear filled eyes. I know that everyone can see what an amazing mother you are and cannot begin to comprehend what you have to contend with.
    Disneyland is a beautiful place to visit around the holidays, but I would go with you gut and leave two days after Christmas. My family traveled to Disneyland the week of Christmas and it was awful. I have three children and I was so worried about being within arms reach and keeping eyes on them because the crowds were so bad. And forget about pushing a stroller through the madness. It takes the joy out of Disneyland when it is overcrowded.
    I am thinking of you and JLK and your family daily. I would love to help, I would love to fix her, I would love to do anything I could to make your life as is was before this hoorible disease.
    You are doing a good job!

  3. I wouldn’t say that I enjoy this blog as you say, but reading your story of how you’re coping with such strength and vulnerability and honesty inspires me to cope with my own challenges with the same grace.

    Keep writing if it makes you feel better, and be gentle with yourself. We are all doing the best we can as we navigate this life and the challenges can teach us so that the pieces that we lose eventually become the things that make us whole again. It doesn’t make that loss any easier to endure.

    Hope you’re getting good self care so that you can keep going. None of this is easy and you’re doing beautifully. Be sure to ask for help!

  4. I agree with Angela’s comments above. Thank you for your writing. Your strength and the beauty you show is amazing and so inspiring. So much love and many prayers for the Kranz family!

  5. Don’t feel like you owe any of us anything, you do not! Don’t write for us. Use this journal for you. Write the memories, get some thoughts and feelings out and maybe feel a little more peace by doing so. I check daily to see if their is a new entry. I guess in my own way it’s my way of “being there”. I can’t do much from so far away but I can listen. I can laugh and cry and hurt with you. And maybe in some small way that helps. My hope is that it does.

    I can’t speak for losing a child. However I did lose my brother. And even though that is one of the hardest things I have ever done. He is and will always be one of the best things to ever happen to me. And even in his death I learned so much. He taught me more than I can ever begin to explain. And Jennifer does and will have this same effect on her siblings. A piece of all of you will go with her and likewise a piece of her will always be with you all. And now 15 years later that same thought always brings me comfort. I know in heaven my brother has me and I know here I still have him. It is hard, plain and simple. Their is no sugar coating and their is not a magic pill but their are ways to tell and teach your littlest ones so that Jennifer will always be with them and will always be leading and teaching them. It’s just unbearable to think of any of this.

    I know these thoughts may not help at all now. But maybe one day they will a little. We are praying Libby. You have a community here in NC praying and fighting with you! And we won’t stop!

  6. I don’t think it’s possible for you to disappoint anyone! No one can imagine being handed the card your family has been handed. Your concern is getting through each day, and embracing it in its entirety. All your family, friends and complete strangers wish we could make it better and we have no preconceived idea of how you should handle this. Instead we’re here to read your release and support you any way we can, without judgements. Your in my heart, thoughts and prayers!

  7. Your friends and family can not be in “expecting” mode from you right now. I can only imagine that they are not. Just accept that everyone is here for you and you owe no one but your children, self, and husband – anything – for now. It’s for now. And we all are OK with that. And if we’re not, it’s not your problem to take on. You have enough.

    I never know what to say except how sad I am for you to realize you will likely lose your daughter way too soon. I was working out Thursday morning, and the song “100 years to live… I’m 15 for a moment…” which usually makes me get all nostalgic and navel-gazing anyway, made me burst into tears and I asked my trainer to turn it off. I said “My friend’s little girl probably won’t live pat 6, and I can’t hear about 15.” I think we all think about you in our own ways.

    So, thinking of you. Please just think of yourself. It’s OK. It’s your time to be inward and self-ful.

  8. Dear Elizabeth,
    You are a wonderful mom who is giving all of her love and strength to her family. Please know that if I could send you mine, I would. I send you love for you and your family and hope that in some small way, this will help you continue to be the strong and loving mother you are. You are doing the best you can and your husband and children love you and appreciate everything you do.

    Love,
    Vanessa

  9. Libby, I rarely comment but read every word and check every night. I close my day with thoughts of you and your family. I had to comment this time because I don’t think it’s even possible anyone of your family members or friends could feel disappointed or left out or unacknowledged–that would require a selfishness almost beyond belief when you are in this situation. I know and trust that everyone in your circle is wholly supportive and your worries about “the weight of my desire to do right by all those around me” are so unfounded. YOU ARE DOING AN AMAZING THING WITH SUCH GRACEFULNESS THAT IT IS STAGGERING.

    I love what the poster above said about keeping a piece of her brother with her for always, and he with her.

  10. There is a time that comes, to every good soul, when they can no longer shoulder the burdens they carry. And when that time comes, blessed is the one who, surrounded by willing burden bearers, takes to the task of sharing that awful weight.

    In doing so, she will find those burden-bearers so grateful to have finally found a burden worth carrying, a heart worth loving, and a soul so deserving of care.

  11. in being yourself and sharing your burden could never hurt others. by lifting you up, we are doing what little we can, from far away.
    I pray you feel all those prayers and they help to make the pain just a little bit easier to bear.

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