The Year 2022

I was proud of our family for making it to beach church this morning. Sure, we got there five minutes before the sermon ended, and the wind gusts were whipping Rowland’s cheerios out of his jogger tray, and the ocean waves were responding to the wind with white caps angrily thrashing about, but what was important was we made it. I was able to catch up with some friends on the beach and Rowland got to run around with Bryan and my mom, and I needed that. Rowland has been struggling to go to sleep recently, and as of last week his night time vomiting returned. He’s waking up multiple times during the night and that in combination with his night time vomiting leaves Bryan and I exhausted.

The truth is I feel like those ocean waves with the white caps– angry. The year 2022 has felt as if our family has been knocked down by some invisible wind storm and the way I have responded is with determination to find some meaning behind all of it and also a lot of anger. At the end of 2021 there was a lot of hope that Rowland’s slow weight gain was just that, slow weight gain and there were a lot of people reassuring us that it would be okay, and then he was diagnosed with Cystic Fibrosis. While the diagnosis is daunting, I felt a lot of relief knowing we had an answer to the slow weight gain. However, Rowland began vomiting at night in May, 2022 and we learned he has delayed gastric emptying meaning Rowland has difficulty digesting fats resulting in vomiting at night. We have him on multiple medications to help control the vomiting and it has helped. From October until mid December the vomiting had stopped and we were grateful, but unfortunately it has resumed and we aren’t sure why. In addition we had a four day stay at the hospital in September due to “presumed pancreatitis” because Rowland’s lipase levels are high. Usually high lipase levels indicate pancreatitis however Rowland has no symptoms of pancreatitis and his ultrasound appeared clear. Unfortunately his lipase levels are still high and doctors don’t really know why. They believe it is related to his CF mutation or maybe a post viral thing. In addition, Rowland’s liver levels are slightly elevated so doctors put him on a new medication in order to lower them again. So at least to me, it feels as if the problems never end and it is hard to accept that yes, it could get better, but also it could get worse. We just don’t know. It is easy to fear the worst when even doctors don’t really understand the ‘why’ other than we know it is CF related. I worry specifically about Rowland’s liver levels because if they get too high, he wouldn’t be able to try Trikafta, which is the miracle drug that has helped many (but not all) individuals living with CF. He still may not be able to try it because his rare mutations are not eligible for the drug even if his liver levels are okay. The unknowns can be debilitating for me sometimes.

So it feels like a lot to carry and I have been so angry. I have been angry that this is happening to our family. I’m angry that I gave him this awful mutation. I’m angry that if I were to get pregnant again there is a one in four chance another one of our children could have CF. I am angry there hasn’t been a focus on researching non white populations with CF until recently. I am angry that I can’t go back to work because there are very few people that know how to administer his medications. I am angry that we are taking a financial hit because his health care is so expensive. I am angry that most people don’t understand. Sometimes I feel guilty for being so angry.

And yet, there is so much to be thankful for. I am thankful for Bryan and support from the rest of our family. I am thankful for our CF clinic, especially our CF nurse who responds to my rambling emails with compassion and talks to me on the phone for 45 minutes. I am thankful for health insurance. I am thankful to have people in my life who truly understand because they are experiencing all of it too. I am thankful for working as a school counselor in Hawai’i that has prepared me for all of this. I am thankful for pediatric pulmonologists and GIs and genetic counselors and scientists. I am thankful for the beautiful place we live. I am thankful for friends who listen without judgment. There is so much to be thankful for.

And there have been moments of pure joy in 2022 that have been and continue to be so rewarding that it makes the difficulties worth it. Rowland is so full of joy. He is so outgoing, happy, and active and I love all of the activities we do together. I love seeing his personality come out and I feel peace knowing how much fun he has every day. In addition, I really do find joy in advocacy. I had the opportunity in 2022 to join the Newborn Screening Steering Committee where I am on a committee with experts in the field of newborn screening. This feels like a tremendous honor that my voice gets to be heard, especially because the newborn screen failed Rowland. Finally, I really do feel grateful for where we live. While I do find our healthcare system expensive, frustrating, and have had first hand experience of just how messy and unfair it is, I also know that Rowland does have great health care thanks to insurance, an excellent CF clinic, and networking. I also feel the pain of knowing that people living with CF do not have the same access. Trikafta and other modulators are not available globally even for people who do have the mutations that it works for. Trikafta is very expensive– $300,000 year. Only recently did New Zealand’s government fund Trikafta for those who can benefit from it. Ecuador does not have access to any modulators. In fact, there are countries that do not have access to simple treatments like hypertonic saline (salt water salutation) that can provide benefit and places that cannot determine someone’s mutations because they do not have access to the technology to do so. I would like to contribute in some way to these inequities. I know there is greater meaning that will come out of this. I’m not sure what that looks like yet, but I do know the first step is awareness.

I know that eventually the angry ocean white caps will go away and eventually the sea will be calm. And inevitably there will be another wind or rain storm another day or month or year. I think maybe that is how it is going to be as I navigate being a mom to a toddler with CF (or any toddler for that matter). There will be days filled with anger and then days filled with peace and gratitude. 

My prayer for 2023 is that it will be filled with less anger and more peace and gratitude.