Finding Our Wicked Strong Family
Finding Our Wicked Strong Family
By Joannah Cornell
Posted: February 7, 2023. Originally printed in NEHA’s Fall 2022 Newsletter.
In October of 2014 my world changed when I got the phone call about a baby boy with some possible medical needs. I found out before I chose to adopt Ian that he had hemophilia. I quickly did some research and said, “Yes.” Thankfully I had experience working in the medical field, so I was ready to tackle what was to come. While he was in the hospital for some other medical needs, I met with the hemophilia team and began learning. Our family took it all one step at a time and learned as we went. Years passed, and as he got older, I sought out peer support from other parents who were in a similar situation.
As services in rural Vermont were difficult to come by, I was fortunate to connect with a Facebook Group of those parenting children with hemophilia. It was in that group, at the beginning of the pandemic, that a couple of women told me about the New England Hemophilia Association. I started attending some of the virtual women’s chats during the pandemic, after which our family participated in most of the virtual programming put on by NEHA; it was a welcome introduction to the community. Going from the virtual platform to in-person events was a smooth transition already knowing some of the other members and we were given a warm welcome like we had always been part of the community.
This past year our family attended Family Camp, Fall Fest and most recently, I attended the Women’s Retreat. It has all been an amazing experience and these events have let both Ian and I know that we are not alone. The biggest takeaway from Family Camp was his interest in participating in his treatment. The infusion class has helped him develop that interest and has inspired him to work towards self-infusing.
NEHA’s programming has also helped me not feel alone in this journey. I’ve been able to meet other hemophilia moms and women managing bleeding disorders. I’ve enjoyed talking with moms who are in similar situations with kids the same age and talking to moms who have already walked my current path. That leads me to the most recent event that I attended; the Women’s Retreat. It was amazing to spend an entire weekend connecting with and getting to know the other women in the NEHA community. I left the retreat feeling rejuvenated and like I truly gained an entire extended family. We look forward to future events and to seeing all of our new friends.
Joannah lives in North Chittenden, Vermont, with her three sons, Ian, Kaleb, and Levi. Ian has hemophilia.
