Wet Ink

Each day here bleeds together like ink on a wet piece of paper. It’s hard to tell where one character ends and another begins. We’re told to write in ink on legal documents and other important papers because it’s permanent, but even ink can’t hold up to just a few drops of water. They come splashing down to destroy the definition each character the pen has worked so hard to create. The paper of our life now is filled with blobs of ink all over the page. We try so hard not to let the paper tear but the drops just won’t stop coming down long enough to let it dry.

One half of our family stays at home and makes trips to the hospital. The other half stays at the hospital and makes trips home. Either child feels the divide greater than both adults combined. Izzy has been feeling well the past few days which makes it harder for her emotionally. This trip has been filled with tears over things forgotten at home and a longing to see what her room looks like again. She misses her dog (only one apparently) and each night as we lay in bed she asks if Daddy and Carter are laying in bed too. They visited this weekend and Carter was more delicate this trip too. He cried this morning when we didn’t have Cheerios for him to eat and when I asked him what else he wanted he replied, “I just want to be with you always,” through his tears. Lord knows that’s all I want too, to be with both of my children always. But I can’t.

If things go well overnight we will go home tomorrow. Then we’ll come back two days later to begin the week long series of testing to find results of how well the chemo has worked. Our prayer is that the results of these tests will show No Evidence of Disease. We need to see a good response to continue forward with high hope for a cure. Then the day after Christmas we are scheduled for Bone Marrow Transplant.

This journey has taken a toll on each of us. We need desperately for God to save us. If you pray for Izzy this week I would ask you to echo the cry of my heart found within “O Come, O Come, Emmanuel.” Just as the nation of Israel waited for their savior to come, a little girl named Israelle is waiting too.

Oh, come, oh, come, Emmanuel,
And ransom captive Israelle,
That mourns in lonely exile here
Until the Son of God appear.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israelle!

From Whom Much Is Given

It’s Thanksgiving Day and in spite of the fact that the rest of the country is celebrating it feels like just another Thursday to me. I guess I’d be lying if I said I didn’t feel like we’re missing out on something, like there isn’t some huge party that everyone else got invited to except us. But the truth is, if I sit here long enough in our 8×8 hospital room with stark white walls I forget and it does feel just like another Thursday.

Izzy’s chemo was over Friday, but her nausea got out of control over the weekend. Throughout the week it’s been one thing after another that has kept us here. Now her white blood count is zero, she’s had a fever for three days and she has mucositis again. The sores in her mouth and throat are so painful they have her hooked up to a pain pump. It is incredibly hard to watch her when she is like this, but we continue to fight. And the chance to fight for her life is a gift that everyone isn’t given. A gift I will choose to be thankful for today and everyday.

All of the other Thanksgivings in my life sort of blend together now. Looking back I remember food and family and a feeling of camaraderie with everyone else I knew. And people I didn’t know for that matter. At any point in the day I knew people across the entire country were sitting around a big table eating generally delicious food and taking a moment to be thankful. But this year in the days leading up to today my temptation was to feel alone.

Until last night when I was talking to another mom and began to have a change of heart. As we stood downstairs talking to Sarah (I had to mention you by name, sorry) said that she and her husband had joked about scheduling holidays that work around their schedule. They have walked this journey with cancer much longer than we have. And then as we were walking away she said, “Everyday is really Thanksgiving for us anyway. You know?” But I didn’t know. I hadn’t thought of it that way. Their son is only six and their journey has already been so long. They are thankful for life everyday. They don’t need a turkey on the table to remind them to be. As I walked away from her last night I was reminded that I shouldn’t need a turkey on my table to be thankful right now either.

Luke 12:48 says, “From everyone who has been given much, much will be demanded; and from the one whom has been entrusted much, much more will be asked.” In other words, from whom much is given, much is expected. It’s a principle many live by whether or not they align themselves with the Christian Faith. What I’ve been wondering for the past month or so is about the reverse. What about ‘from whom much is taken’? It’s taken me some time, but I’ve come to two conclusions.

The first is this, “from whom much is taken, little is needed.” That’s why families like Sarah’s and others don’t get too worked up over the idea of spending Thanksgiving in the hospital. They have been stolen from for so long that they don’t need a fancy holiday dinner to smile. They get excited about everyday they aren’t in the hospital, holiday or not. When so much has been taken your entire framework for a good day changes. I talked with a mom this morning who just months ago was told her son had no chance for a cure. You can believe that now her definition of a good day is every day they hear anything different than that. She couldn’t care less that they are in the hospital today. They’re getting a treatment now that is actually working. After talking to other families that have walked on this journey longer than myself I feel confident saying that “from whom much is taken, little is needed.”

But the most important conclusion I’ve come to is this: “from whom much is taken, much will be restored.” I don’t really think that conclusion is any theory I need to see proven. I think it’s a promise consistent with the nature of God. Yes, if He’s given us a lot He expects a lot from us as well. But when He sees us stolen from, our hearts broken, He longs to restore them. And He will. I don’t know what restoration will look like for my family or any of the others on this unfortunate journey but I know He’s good for it.

A Theology of Heaven

We finally got to go home for nine days and were able to enjoy the longest break we’ve ever had. Monday we came back for this last round of chemo but our time home was wonderful. Not knowing for sure how long we’d be gone and whether or not we’d make it back for Thanksgiving, I had put up our Christmas Tree earlier in the week. I always put it up the weekend after Thanksgiving and for all I knew we might not be home until a week or so after that. It was important to me that it still went up. Not just because I like things done a certain way and it would drive me nuts if it wasn’t up, but because the last time I had seen it I had felt the most devastating pain.

It was December 23rd last year when we found out about the cancer, yet we were forced to wait until December 27th to have surgery or even stand face to face with a doctor to find out what it meant. Four days I looked at that tree while my kids danced merrily around it with excitement. Four days I fought desperately not to ruin their spirits by revealing to them that my insides had just been torn apart. I managed to keep it together while in the hospital but when I walked in the front door I fell apart. The sight of that tree made me feel like I was reliving those four days all over again. I walked upstairs to my bedroom to take a nap and told Kendrick to get it out of the house. I didn’t care if he threw it all away but when I came back downstairs I didn’t want to see a single sign of Christmas.

This year it was important to me that our tree went up because I was not about to let cancer steal something else from me. I love Christmas. I love the entire season and I don’t want it to be forever tainted by last year’s experience. Putting up our tree on November 5th allowed me to take something back from cancer. Something for our entire family. Sure I put the tree up a little crooked and maybe it was missing the skirt, but I didn’t care. Because when I looked at it I didn’t feel the trauma that I felt last year. I felt joy. For me, being able to enjoy the season that celebrates Christ’s birth into the world is non-negotiable. Cancer does not get that.

As I’ve mentioned before, Izzy loves babies, but Baby Jesus, the most famous baby in the world, is her favorite. (And I like to think it’s not just because He’s gotten so much publicity). All the talk about Christmas got her excited about Baby Jesus again. She got out her Little Tikes Nativity Set and started playing with it all the time when we were home. It was one of the first things she packed for this admission. She’s reenacted the scene at least twice a day.

The thing about Izzy, is that she’s taken everything she knows about God and Jesus and Christmas, rolled it all together and come up with her own theology on heaven. It’s unique, perhaps a bit odd but it’s beautiful. It wasn’t until our hamster died last spring that I realized what was going on.

Cocoa had died a few days before and the four of us were walking in the house from the car. Out of the blue she asked, “I wonder if Mary and Jesus will put Cocoa on the cake?” Having no idea what she was talking about I looked down and asked what cake she was talking about. “Baby Jesus’ birthday cake,” she said, looking at me like I was a complete idiot.

“You mean Cocoa is in heaven with Mary and Joseph?” I asked, starting to sort of understand.

“They take care of all the animals,” she said. “And are getting ready for Baby Jesus’ birthday party.” The way she said it was so matter of fact. Like we had told her all this stuff and then given her the stable with a bunch of farm animals so why didn’t we get it. “Do you think Cocoa will be on His cake?” she asked again, getting back to her original question.

“Probably so,” I said with a smile. For Izzy the whole Nativity Scene was just constantly going on in heaven. All year long Mary and Joseph were just taking care of farm animals planning a birthday party. I guess it’s understandable where she came up with the idea. After all we did tell her that Jesus was the Son of God and they are in heaven, and then tell her that Joseph was Jesus’ dad and hand her a stable. ??? It’s very confusing stuff. And besides, I’ve never read anything in the bible that says there isn’t a stable in heaven anyway. Talk of heaven like this was cute.

With the big birthday party just around the corner, there has been a lot of talk about Mary, Joseph and Baby Jesus around our family. And all but one conversation has been, well cute. But one conversation left me speechless, staring at my crooked Christmas tree.

The kids and I were sitting on the couch one morning talking about nightmares when Carter said, “Sometimes I’ve been wondering what it would be like if we were all dead.” I sat stunned not sure where this was coming from. I probed him a little but again he said, “I just wonder what would happen if we were all dead.”

I thought for a moment. I had about three seconds to figure out how to explain that God has given us life and wants us here for a reason, but delicately, being sure not to say anything that I would regret later. I did my best. Izzy just listened to us and Carter continued to question. “But what if we weren’t alive?”

I felt my heart pounding in my chest, “Well, when God is ready for us to come back to Him, we will go up to heaven.” That was enough for Carter. He said nothing more, but Izzy, her eyes lit up at my last sentence.

“I can’t wait to go to heaven! It will be so fun to see Mary and Joseph and Baby Jesus and all the animals!” She clutched her hands together at her chest and smiled from ear to ear. I sat speechless staring at the Christmas tree trying desperately to pull it together for a response. This conversation about heaven was anything but cute. My heart that had been pounding stood still. I didn’t want to talk to Izzy about things like death or heaven because it made me afraid. But the truth was it didn’t make her afraid. It made her happy. Finally, I put my hand on her back and said, “Yes, heaven will be amazing and I know they will be excited to see you too.”

Like any parent, I would say my Izzy is one remarkable little girl. As she sat in her hospital bed this week and reenacted Baby Jesus’ birth over and over again I felt a vast array of emotions once again. She wasn’t just playing the nativity. She was playing heaven.

I will leave you with a surprise that Izzy and the music therapist left for me this week. I’ll say nothing more, I’ll let Izzy speak for herself.

01 Izzy_away in a manger