I took Chloe’s temperature this morning. After her alarm went off at 6:40, she crawled back into bed, and didn’t want to get up, whereas she (mostly) usually hops happily out of bed. What was more alarming is that she was complaining of being cold. Freezing, in fact, was how she had worded it. I felt her body and she did indeed feel warm all over. I anxiously crossed the house to retrieve the thermometer, reflecting on the fact that she had been complaining of being cold in the mornings lately. When she was firs t sick back in January, chills were her first sign of any symptoms. So, with nervous anticipation, I placed the thermometer under her tongue. Seconds later, we were in the clear: 98.4. I folded back the covers and announced that it was time to get up now, and that she could put some warm clothes on if she needed to. It was only then that she clarifyied to me that she was warm in her bed, but that she had been cold when she got up to turn off her alarm clock across the room. Now you tell me, I thought. And here I had gone, not into a dizzying panic, but into mental alert mode, over her being cold. So, this is part of the new normal. Me kind of assuming the worst– not in a total panic, but very much acting from that place where things might not be okay.
It was at the park two days ago that this issue, that I tend to default to this place of all-too-familiar alert whenever there might be the slightest inkling of reason to do so, was brought to my attention. A community friend and I were waiting for our kindergarteners to return from their Durango Devo (mountain bike team) ride. Our kids’ group was over 20 minutes late. I found myself wondering if I would ever see my son again, and when I mentioned to my friend that I was fearing that they had all fallen in the river or something, she was startled by my response. (Doesn’t everybody wonder if their kid is in the river when their team and coaches should be riding safely down the trail??? My thoughts seem absurd to me now that I am putting them into writing). It was she who gently pointed out that I had been envisioning the worst case scenario. As a healer (she is a very gifted massage therapist), she saw the trauma that was still in my nervous system and psyche. Now that I see this, I can notice these catastrophic thoughts when they arise and try not take myself so seriously. I can also learn to lean more into my intuition (surely, if there were a big problem on the bike trail, the coaches on my son’s half of the team would have called the other coaches, who were back at the park and waiting for them). And of course, just two minutes later, Jordan’s team comes calmly and confidently pedaling down the bike path, heading our direction, without any hint of drama or sense of loss.
Mostly, besides from my occasional moments of alarm, I am spending my days back at work, and not worried. Chloe is finally off of her weekend antibiotic; she had been on it since her diagnosis. The reasoning behind the extended dosage was to prevent a certain bacterial pneumonia from taking a hold of her, because if it she were to get it- it would have been life-threatening. We can now give her many, many PRObiotics in order to restore her gut flora, and thus, her overall internal state of health.
Other than that, there’s nothing medical to report. Chloe’s in third grade, loving it, and totally thriving. Her brother Jordan is in kindergarten. It’s quite the luxury to have both kids in the same school, just four blocks from our home. I mostly spend my days getting things done, and not worrying about my kids.
In other news, in August we took many (previously scheduled) trips, and when it was all said and done, we realized that the experiences of those last few trips ultimately ushered in a new era for our family. We are comfortably settling into this new normal. Chloe’s cancer treatment is getting further and further behind us. The start of school 4 weeks ago has played a big part in shaping our currently comfortable reality. Here’s how the whirlwind of events from the past month unfolded:
First, there was Disneyland. That’s the one in California… Anaheim, to be exact. We traveled compliments of Make-A-Wish Colorado, as it had been Chloe’s wish to go to Disneyland. Craig and I were thrilled with her choice, because our family loves California. Craig and I lived there from 2004-2008, while I was in chiropractic school in the San Francisco Bay area. In fact, Chloe was born in San Francisco, when I still had a year of school to complete.
We went into this Disney trip without any expectations, and ended up spending six days in total bliss while fully immersed in the SoCal and Disney experience. As my friend Sabrina confirmed to us after our return from the trip: Disney will transport you. And we indeed were transported. Disney is magic and stimulation, nonstop, and we emerged with extreme gratitude and fondness in our hearts for the magical kingdom.
The kids were not out of their comfort zones at all. Instead, I felt like they were sitting comfortably in the very seats of their young childhood comfort zones. They dove into riding rides…. ALL the rides…. with excited anticipation and glee. They rode the scary dark rides, the fast roller coaster rides, and the scary-dark-fast roller coaster rides (Space Mountain). One magical aspect of our trip, which we will never have again, was a little blue card shaped like the genie from Aladdin, which enabled us to have special access to all the rides. In other words: we skipped all the lines (and in August, at the peak of tourist season, some of the lines were over an hour long). I would reach into my purse as we approached the entrance to each ride and pull out the sacred, guarded Genie Pass, and show it to the employee stationed outside the gates where the line forms. He or she would smile in recognition, nod in understanding, and then proceed to give us directions (or sometimes, personally show us) as to how to get to the front of the line. The longest we ever waited was about 10-12 minutes for any one ride (as some rides had limited handicapped/special access loading areas).
The magic of Disneyland wasn’t just from skipping the lines. The theme park truly does a great job of taking you to another world. The sites, the rides, the entertaining shows, the cleanliness of the parks- it all added up to an incredible experience. Disneyland even has an air conditioned Make-A-Wish lounge, for Wish families to take a break. They had cold water, fruit, and a TV monitor which played nonstop Disney movies. We visited the lounge each of the 2 days we were at the park, and it made a difference in our stamina, to get a chance to take a real break (Anahiem was having a heat wave and it was nearly 100 degrees on the days we were there). I was surprised that I liked the faster rides, as I had not ridden amusement park rides in decades. Chloe took the rides on with a certain fervor, having made the height requirement on the fastest, craziest, most upside-down roller coaster in the park. She and Craig rode that one, while I comforted a very upset, one-inch-too-short Jordan on the sidelines. Other than this meltdown over being left out, there was no drama the entire week. Everyone got along, everyone swam in the Pacific Ocean (the kids even got to boogie board), and everyone had pure, genuine FUN. I can speak for Craig and myself when I say that we were in the moment and not really thinking at all about the details of our usual daily lives. We all made memories to last a lifetime on that trip. Craig asked me, on our last day there, if I would ever consider taking a Disney vacation. My immediate answer was, “Yes!” (whereas before this trip, I wasn’t feeling the draw to go to Disneyland as a vacation destination).
The weekend after Disney, our family traveled to Denver for Chloe’s routine follow up testing at Children’s Hospital. Everything checked out swimmingly, and her white counts continue to improve as expected. Since getting discharged from inpatient care on June 1st, Chloe has gained about 6 pounds and grown 2 inches! She is definitely looking more like a normal 8 year-old and less like a cancer patient. After a whirlwind overnight at Brent’s Place connecting with some families that we know there, we headed to the NW Denver suburb of Westminster for a weekend of immersion in chiropractic philosophy. It is my favorite annual event that I attend, surrounded and uplifted by like-minded chiropractors, who happen to be incredible human beings as well.
Craig was gracious enough to entertain the kids for most of the weekend (he did get to attend a concert in Boulder with an old friend on Friday night, so he got to have some fun, too). For the most part, I attended the speakers while the kids played in the indoor pool and outdoor hot tub. Since Chloe’s Broviak was removed in June, both kids have greatly improved their swimming skills, mostly because we have been in so many hotel pools this summer! Chloe, who before this weekend conference had always been a bit hesitant to want to go underwater, spent the weekend working on her back float and discovering the fun of being underwater. Having spent my entire childhood in a pool, I was very happy to see her enjoying the water on a new level.
It seems as if every little increment of life lived post hospital helps us to move on a little bit. Not move in as in escape, but move forward into a fully non-medicalized life where we get to live from our own values and ideals. I am embracing the new normal. It is just fine with me. I don’t even mind the extra level of caution that gets triggered sometimes. I wanted to write to you all about our family experiences more often, here lately, and just have not had the time. I’m back at work- which is such a relief and a pure joy- and getting my practice off the ground has been quite consuming.
I did get a writing piece published in the current issue of E.P.I.C Magazine, which is a local magazine. My article is entitled: How My Daughter’s Cancer Helped Me Heal. If you click on the link, my article starts on page 2. Here is the link: http://epicmag.org/pdfs/september-october-2015/
I find myself at this point looking back on our hospital experience with much fondness. I can tell that Chloe feels the same way. She’s been saying lately, “I miss hospitaaaal,” in a longing sort of way. We will stay HERE in Durango for the month of September, having scheduled her monthly follow up blood test with the local pediatric oncologist. We so very much need a break from traveling; this will be the first month that we have not traveled this year! We plan to head to Denver for her follow up in October, however, to go to the zoo (which is currently one of my favorite things to do with the kids) and to hopefully visit with some colleagues and friends on the Front Range.
Here are just a few photos from our Disney trip. Until next time!
Steph and Family