Rituals and Routines

Rituals and routines are so important to kids...to most of us, really. We all crave predictable patterns in our lives daily. The smallest deviation can be the biggest deal to children or anyone who resists change. In this age of COVID-19 when everything has changed, we crave these rituals and routines and even seek to modify them as needed to maintain some sense of normalcy.

The last few days have been challenging, but also promising. While Ollie has been apprehensive of his medical procedures and tests, he's also been eager and happy to get them over with. He's wrestled with his anxiety over and over and come out the victor (with some help from his family of course). We use the same methods repeatedly now to manage the anxiety:

- Touch to sooth (rubbing his head, holding his hand, rubbing his back);

- Calming voice reminding him everything is okay and we're right here with him;

- Playing a music playlist that he loves and knows so well;

- Rewatching the same tv series on repeat so he knows what comes next;

- Deep breathing techniques (he often reminds me to take a deep breath, too);

- Counting down whatever time we have left until the scary thing happens and just focusing on the numbers; 

- Distractions like listing Beyblades or Lego sets or anything else that he's interested in with many versions.

Once the stressful things are over, he's our boy again...lately more mischievous, grinning, telling jokes, laughing out loud for the first time since March (sweetest sound ever) and generally trying to trick us into doing his bidding constantly. 

We bought this hammock the first time I visited Colombia with Mario when we were engaged. Who knew it would wrap our children in comfort during the most difficult time in our lives?!

Thursday night we had dinner on the deck together at Ollie's request. While eating he asked if we could have a fire in the fire table after. We said, why not? As we are eating he suddenly asked, "Wait...Will I be able to SEE the fire?!" When we asked if he could see anything but darkness now he said no, and we gently told him then he wouldn't be able to see the flames, but he'd feel their warmth. He was very sad after that and lost all interest in the fire. This horrible disease robs so much joy. We did try to explain that maybe after the lymphoma were out of his brain he might be able to see some light again like he could see before, but that was little consolation for him. He asked to go to bed and never mentioned the fire again. 😭

Abby and Mario stayed up and roasted marshmallows instead while I read to Ollie from his latest favourite book (from the Stink Moody series). This too is a ritual. We have been reading together every night since he was a newborn and would snuggle in with Abby and I while we read together each night until she started reading chapter books on her own. We stopped reading nightly when he got so sick at CHEO and we couldn't predict sleeping patterns. This afternoon he asked me to read more and said he loves it when I read to him and it's his favourite. 💕

Abby and Daddy have had more time together in the last 6 months and developed their own rituals and routines, too. So they were content to be together at the fire while Ollie and I read and later to watch a tv series together as they started doing 6 months ago when Ollie and I were at CHEO for days and weeks at a time.

As much as they crave stability, sometimes Ollie changes the routine himself and it leaves me guessing. Today for example, he decided to guzzle his contrast drink down in moments. Normally this is an agonizing, sip by sip process where by the end he's nauseous from gagging and stressing about it. He sucked back not just one, but two cups in moments. Then he wanted then to take him for CT immediately so I had to play a bunch of tricks to try to distract him until we could go to CT almost two hours later.

While we waited to be taken in he tried several tactics to get them to come and get him right away including yelling for them to do so. This is the not so fun part of my new job. My "coworker" can be rude and demanding when he's scared. So I walked the hall up and down with his wheelchair and told him about the amazing CT technician who had come in at midnight on a Saturday when he was in ICU and we thought he was having a stroke. I explained how patient and kind she was to wake up, come in after hours and treat him so gently then and this was why we couldn't shout at people to bring him in now and had to appreciate how hard people at CHEO work every day to get kids well. He calmed down after that. He is a gentle soul under the steroids and the fear.

Right now an important ritual that seems to represent wellness and his old life is Beyblading. When they had to access his PICC line to put additional contrast in, he was very upset because they'd ruined the perfect cover positioning for Beyblading! So he asked if I could fix it and Dad could bring some Beys to the hospital to test it before he went to radiation.  

What's 10 more minutes when you're already late?' So we met Dad and Abby in the parking lot, had a few quick battles (all of which he won, of course) and verified that yes, he can still Beyblade like a champ.

Off we went to radiation. He was so tired that for the first time he slept through the scans and treatment.

At home later he was much happier to be done all of the hard stuff. 

So now we wait for results. This in itself has become its own routine over the last 6 months.Hopefully by Monday we should have results.

So we'll practice patience and pray a lot this weekend, but in the meantime I'm going to take those laugh out loud and grinning moments as a heaven sent sign that this is working. Just like I take the literal sign at Canadian Blood Services that we pass on the way to Hospital daily that says, "Stem Cells for Life" as a sign that we are on the right path again. 

God bless you all and have a lovely weekend! I will share when we have news. Love each other and don't take the grins or belly laughs for granted.