by: Amy Gaytan
Published: LifeLines for Health, vol. 13 (Spring/Summer 2019)
In November 2018, I had the opportunity to attend the Mom’s Uninhibited Meeting (MUM) offered by CHES. It was by chance that I saw the social media post and figured I wouldn’t be able to attend with everything going on in my life, but thankfully, I did! I had no idea what to expect. My weekend started as I boarded the plane to Nashville. It was difficult being away from my family for the first time since my son had been born. Although, after the evening session that day, I immediately felt that I had made the right decision. The first night was special because it set the stage for the rest of the weekend. Even though I had never met any of these lovely women, it was easy to talk with them and share experiences since we all knew we had at least one thing in common. That night, I felt emotionally drained because the words that were shared struck a chord with me. The weight of my feelings was put into words that I could not or dared not articulate, or even think about, but benefited deeply from hearing them spoken.
My son was diagnosed with severe Hemophilia A in the early summer of 2018. About a month after that diagnosis, we found out he had developed inhibitors. To say we were overwhelmed is an understatement. The information that we had to take in seemed impossible to digest. Right when we thought we had a handle on it, something new would come up. Having the opportunity to learn and take things in that weekend opened my eyes to how much I still need to learn but also, more importantly, that my family has a choice when it comes to my son’s treatment and we can and should ask questions.
The educational sessions provided were eye opening. Since every mom had a different story and had been on their journey for different amounts of time, it was even more helpful. Each had different questions and stories that sparked questions for me and helped me learn even more than what was taught during the sessions. These things all changed my perspective on my son’s treatment. It has enabled me to have a stronger voice when speaking with his doctors and it encouraged me to continue to champion for his best interest. Thanks to the help of Kathy Byrne, I was even able to stick my own vein! Having never been a fan of needles, it really was a milestone for me, and it encouraged me that someday I can learn to do the same for my son.
I think that every mom with a child who has an inhibitor should attend the MUM program. For the moms that are just beginning on this journey like I was, it was a great opportunity to learn, connect, and share. For moms that are further along in their journey, it was a great opportunity to guide and support those of us who are just getting started. I can’t thank Janet, and the CHES team enough for offering such a wonderful weekend. I am very grateful for the opportunity that I had to experience this MUM weekend.
Amy and her husband, Oscar have been married for 4 years and live in Orange County, CA with their 2-year-old son Hudson. She works at the Disneyland Resort as a Food and Beverage manager.