The new normal, a miracle, & information about the OC Great Strides Walk

I don't think I have ever experienced such abrupt life changing transitions as I have the past two years. I went from teaching high school students dance and drama at a school on the Island of Hawai'i to a mom with a nine month old son living with CF in Southern California in less than two years. When Bryan and I were living in Kona, my drama class was working on an original musical. It was spring break and I was looking forward to finalizing the musical with my students when we returned. Then, we just never returned due to closures caused by the pandemic. I never got to say goodbye to my students in person. About six months later I got pregnant and was so nauseous I did not have the energy to say goodbye to many friends on the island those last few months before we moved to California. The lack of closure had been haunting me because my time with my students and living in Kona had been so meaningful and I felt some guilt and a heavy feeling of sadness for leaving without proper goodbyes. When Rowland was diagnosed with CF, it was a signal to me that I needed to stop living in the past and move forward with this new normal. 

Most of us have experienced the emotional toll of considering risks and benefits of various situations throughout this pandemic. Should I attend an indoor event with a large group of people? Should I wear a mask outdoors? Should I upgrade to a KN95? Should I remain outdoors for most activities? We have had to reevaluate our boundaries when it comes to risks and benefits as the pandemic surges arise and as cases decline. It has been mentally exhausting for most of us, but cases are so low here in the US, most of us have gone back to normal life and that has been tough for me, because our family is not one of those who can go back to normal. We will always be considering risks and benefits of various situations for an unknown period of time even if the pandemic were not in our lives and with the CF diagnosis so fresh, it is emotionally exhausting. I have heard it becomes second nature to assess risks and benefits but I am just not there yet. 

When there is a larger indoor event, I typically do not attend because I do not want to risk bringing something home to Rowland (and if we do, we will wear a KN95 mask around Rowland for a few days and then test for covid). This has prevented me from taking dance class, auditioning for theater, or going to indoor church events. It feels isolating knowing most people around us do not have the emotional toll of assessing benefits and risks and it is daunting knowing this is our new normal for the foreseeable future. 

At times I will doubt myself and wonder if I am overreacting. I still do not know how to handle sharing these boundaries to people I do not know well. I wonder if people will judge my decisions so I usually awkwardly share about Rowland's diagnosis of CF to just "get it out of the way" and with the hope this information will help people understand our boundaries. Navigating all of this is weird and confusing and exhausting. 

A connection I have made that has helped me navigate all of this is speaking with a mom who has a son with the same two mutations as Rowland. I need to say that again because truly it is a God given miracle. Her son and my son have the same two mutations. I did rough statistics on this and there is an approximately 0.00026% that I would have ever found someone else with Rowland's mutations. I told Bryan we should buy a lottery ticket because I'm pretty sure the odds of finding someone else with the same two mutations is less than winning the lottery. If you haven't read my previous blogs, you can find more information on the background of Rowland's two mutations. If you remember both of Rowland's mutations are very rare. There is a data base called CFTR2 that shares information about different CF mutations. Not every patient consents to putting their data in the system, but those that have there are only 10 people with H609R and 324 people with 2184insA. We have partnered to advocate for rare mutations specifically H609R and I am so thrilled with the progress that is being made.

Last, I want to share with you all that Bryan and I are going to be doing the Great Strides Walk in Huntington Beach on May 14, 2022 to raise money for the CF Foundation. We would love if you could join us (you will need to register prior) and/or donate to our walk. Currently the CF Foundation has put an emphasis on research for the final 10% meaning those who do not currently have access to a modulator. The final 10% includes Rowland. This organization is amazing and its fundraising impact is apparent with the newly approved modulator, Trikafta which has changed lives. I personally have experienced wonderful support from the OC CF Foundation. It truly is a well run organization.

Thank you everyone for reading and for your support. It really means a lot to our family!



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