Christmas…

We couldn’t have pulled it off without help from family/friends. Friends who wrapped presents and family who stayed here til 1am Christmas Eve to help assemble and move furniture. We got our new couch…our new snuggle spot…I love it. I am sitting on it right now.

Will this be the place she takes her last breathe?

Christmas eve was good. Family at my sisters house. They played present passing games and ate a gluten free meal and fed off each others excitement. Our kids had a great time and as is per usual for the Kranz family we were virtually the last to leave. I was happy to stay up past midnight…I didn’t waste a moment of what will likely be her last Christmas Eve sleeping. Tonight will likely be the same.

 

This morning was great….slow and lazy and full of happy smiles. Santa spoiled the kids this year. We probably could have stopped with santa gifts and they would have been content…But mommy and daddy did some spoiling as well!

And then we purged. We got rid of a lot of stuff and did some reorganizing. Tony and I aren’t overly clean but we don’t like to look at messiness either. Our house looks like a day care. Full of toys…big toys…loud toys…we have always been ok with that, but every toy has a place. Today we took the time to find places for all their new toys. I wonder if I will regret that next year. Not just leaving the house a Christmas mess for longer?

We head to (sshhhh still a surprise) Disneyland on JLKs (and baby Charlottes) surprise trip on Thursday and tomorrow is Christmas with my family…So we had to do it today or come home to a major mess…I have realized though how much time I have squandered cleaning/tidying up throughout their little lives. I read all the pinterest/facebook things about cobwebs waiting…children won’t…But its all easier said then done.

After the kids were in bed I told Tony what a good job he did cleaning our new kitchen. He said he was going to be anal about it for awhile…and asked me to as well (just a little). I told him I wouldn’t be. I would keep the house tidy(ish) and food flowing…but not clean. Probably never again the way I was. He totally got it…I am thankful for him.

I set a limit on our “work” tonight…then we popped popcorn (her request) and had a movie date with the kids. Elf. And  family style dinner of JLKs requested foods. She enjoyed it. I enjoyed watching her eat and swallow…

What will it be like when she struggles to swallow? Will she choke? Will she know and just want smoothies? How will I feed the other kids without making her sad or jealous?

We had her first post radiation oncology appointment Christmas Eve as well. Dr Partap noted the same things we did, that she seems to have some improvement!!! I floated out of that appointment. Amazing how hearing that my child probably has at least a few more months left can make my heart sing. Make me feel so excited like I want to high five everybody we see. My perspective has thankfully stayed changed.

This morning she was the first to wake. And she crawled into bed with us to watch a show while we waited for the other kids to wake up. Nicholas is still a bit young to get the whole Christmas deal…but Jonathan and Jennifer…they are at the magic age. SO excited and joyful and sparkly. Belief in santa and his magic so strong…

I am not just losing christmases with her…Its them too. Our first holidays without her they will be so young…all 3 of her siblings will be in the magic years still…But mom and dad will be shells.. Maybe we are a little already? We will try of course and maybe they wont really know…but of course they will…By the time we can maybe take a deep breathe without cracking we will have missed these golden years of Christmas…unable to ever get them back.

My poor babies….they will be missing her too. Even Charlotte who will never remember her big sister will ache…knowing a piece of her mommy and daddy is missing. She won’t get to know our carefree Christmas either…she will only know one with undercurrents of intense sorrow.

 

 

 

 

 

I’m sure its wrong to be thinking ahead to all of this. To not just be enjoying this year we have. But I don’t know how not to.

Today she only opened with her left hand…her right laying useless. She is utterly amazing how she seamlessly compensates for the weakness.

Why doesnt she talk to me about it? Jennifer please baby tell me how you are feeling? Tell me what its like for you?

I let her do her thing. I stop people (myself included) from jumping in to do it for her unless she asks for help. Is that right though? Does she think I don’t care? Is she scared that it will upset me?

It won’t honey…well not too much…

This is all so horrific…Spending Christmas night in a separate room from my husband researching clinical trials…Because I have to feel like I am still doing something for her. Like I am fighting and not giving up.
I held it all in while they were awake..I hope they had a great Christmas. I honestly did..But as soon as they were in bed I felt rage. So angry we are in this position. That we can’t forget she is dying. Her eye reminds me. The weakness in her arm reminds me. Her cheeks swollen from steroids.

But she seems so healthy….

JLK got a rash tonight. Normally I am the kind of mom that ignores little ickies. But tonight I called into the on call oncologist. After our 2nd call we decided to stay home tonight. But its all these little things that don’t let me forget she is so very very sick.

Living real life while trying to brace for our world to crumble. So much to balance. A tightrope to walk…I am so scared to fall.

And Christmas seems to be the culmination of all of that for me. I am sitting here looking at our tree…

Remembering what it used to feel like to look at it years past…like excitement and magic and carefree…

This year…its memories..and a yearning and fear…

What will next year be? And the years after that?

I think I am just starting to realize this is forever. Don’t know how that little tidbit escaped me. I want to knock the tree down…crunch every ornament…I want to hug it and go back to the way it was. Go back to the the ideal christmas we fought so hard to have…one with young children to share it with.

How did we end up here? How is this possibly our reality?

I miss Christmas.