Learning to Live Again

As we approached the end of Jenna’s chemotherapy earlier this month, we thought about what might change once her treatment was finished. The more we thought about it, the more we realized… not a lot. She still has the feeding tube as long as she isn’t eating and even without chemo, she still needs 6 medications, some twice a day, for her liver. BUT, one big change is that Jenna’s immune system will return to normal. And that means we don’t have to be so afraid of Jenna getting sick. It means we can be around people again!

What did we do before we were scared to be around people, afraid Jenna would get sick and have to be hospitalized with an infection her immune system wasn’t able to handle? This question boggled us. What DID we do??

We realized fairly quickly we would have to learn how to get out and live life again. And it would take some effort. So we created a family project – Learning to Live Again – and committed to doing at least one thing each week that we haven’t done in a long time, used to love doing or have never done before.

“People need to be made more aware of the need to work at learning how to live because life is so quick and sometimes it goes away too quickly.”  ~Andy Warhol

After months and months of hardly getting out at all, often our big weekly outing being grocery shopping, our project kickoff was a pretty daring one… We drove over an hour to see the Midway Ice Castles. We’d seen pictures on Facebook but had never been there in person.

Our kickoff event went like this… We packed a car-picnic dinner, Jenna’s feeds, everyone’s winter clothes and were on our way, only 20 minutes behind schedule (Good). Within half an hour I realized I’d forgotten my camera (Bad). My husband said, “I have my iPhone.” (Very good!) Problem solved….

As we drove through Salt Lake City and into the canyon toward Park City, I started panicking (Bad)… What if we didn’t bring enough formula and there’s a freak snowstorm and we’re stranded on the highway for days and, and, and… And then Jenna started gagging and crying and we thought she was going to throw up (Very bad). We pulled to the shoulder and got her settled down, sans vomit, and were off again (Very good). As we drove into the canyon and the city faded behind us, my heart rate slowed, my mind quieted and I took in the peace of the canyon, the vastness of it all (Very good). Everyone was quiet (Good). Ryan didn’t even ask, “Are we almost there yet?” (Very good)…

As soon as we arrived in Midway and found a parking space our son said he felt sick and was going to throw up (Very bad). He feels sick like this when he doesn’t eat enough, so we gave him a chip to nibble (Good). Then realized he’d been wearing ALL of his winter gear the entire way! (Bad) Not only was he hungry, he was overheated and probably dehydrated! (Bad). We rolled down all the windows, he peeled off his coat, snow pants and boots. Eventually he felt better and we enjoyed our car-picnic (Very good).

As we were finishing my husband saw someone he knew and hopped out to say hi. His friend said the lines were crazy long (Bad) and they had decided not to wait and were heading home. O.K. Well, we thought, we paid for our tickets in advance so we shouldn’t have to wait in line very long (Good). WRONG! We quickly realized the prepaid ticket line and the haven’t-bought-a-ticket-yet line were almost the same length and moving at the same pace (Bad). I got in line for the bathroom while my husband and the kids got in the prepaid ticket line. Twenty-five (!) minutes later I finally got to “go” and they’d moved up maybe a quarter of the way to the entrance (Bad).

The lines moved slowly, slowly forward while the sun set. It was cold and getting colder and I was in and out of panic (Bad)… What will happen if Jenna’s feeding tube freezes, she won’t keep her gloves on and she’ll get frost bite, and, and, and… But then the fire-breathers/fire-dancers show began and I was totally distracted (Good). Before we knew it we could see the entrance and then… we were inside and WOW! Spectacular! (Very, Very good!)

There were A LOT of people and we were often pressed up against strangers and I went in and out of panic (Bad). Jenna started crying because she was cold (Bad) and then I held her inside my coat and she was happy again (Good). We looked up from inside the ice castles and saw the clear sky and twinkling stars (Very good) but when we went to take a picture with my husband’s phone, discovered the phone had died (Bad). But then we asked people along the way to take pictures of us and text them to us and they all agreed (Very good). Jenna kept signing “water” and “ice” and saying “ooo” as we walked through the castles (Very good). Ryan was excited to go on the snow slide (Good) but the line was really long and we said it was too cold to wait (Bad). On the way out we bought him a hot chocolate to make him feel better and it worked (Good). When we got back to the car we looked at the texted pictures and they were all out of focus (Bad). Oh well. Then we ate the dessert from our car-picnic (Very good) and went home, happy (Very, very good).

As we drove home I thought… This is what it looks like when you’re living life. Good and Bad, Good and Bad, Up and Down and Up and Down. Whether you’re out doing fun things or you’re in the hospital holding a sick baby, this is what life looks like…

I also thought, let’s try something easier next time…

“A day that your soul has not been stirred emotionally is a day that you have not lived.” ~Doug Nielsen

The next week we took Ryan to a Hope Kids sponsored showing of The Lego Movie. Jenna stayed with Grandma and Grandpa, it didn’t cost us anything and we all had fun.


We also…

• Had a playdate! At our house! With a new friend! (Can’t remember the last time we did that.) (I jumped the gun on this one. After they left I panicked and sterilized all of Jenna’s toys.)

• Tried 3 new recipes. Two were good. One was NOT. But who cares, we were trying something new!

• Took Jenna to the park and she slid down the toddler slide about 20 times in a row. We might still be there now if we hadn’t had to pick her brother up from swim class.

• Let Jenna go up and down the stairs at Gramma and Grampa’s house – twice – without following right behind her!


• Worked in our poor, neglected yard. We also planted vegetable seeds in a few of our grow boxes.


All in all, I’d say we’ve made a great start to our project! We have a list of over 20 other things we’d like to do, including visit the new Aquarium that recently opened here in Utah, fulfilling Jenna’s wish with Make-A-Wish Foundation, trying more recipes and having a dinner party with friends. We’re excited about this new freedom and grateful for the opportunity to experience life together as a family!


Posted in Blog Posts, Fabric of Life, LCH and Chemo Tagged with: , , , ,

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