As we continue our interview series commemorating our 30th anniversary, Kaitlyn Petronglo sits down with HA community member Deborah Norris. Deborah co-chaired the 2008 Inaugural Hydrocephalus Association Alabama WALK. She has been a catalyst for building and supporting the HA community, no matter where her husband’s military career takes the family. She is former Air Force, herself. Deborah shares her insights on being an advocate, a community member and, most importantly, the parent of a child with hydrocephalus. You can see pictures of her daughter, Adora, in About Hydrocephalus: A Book for Families.
Adora’s in the top photo on the page next to the Table of Contents and is also featured on page 22. We leave October and welcome in November, National Caregivers Month, with Deborah’s interview.
HA: When was your daughter diagnosed with hydrocephalus?
DEBORAH: Adora was diagnosed with congenital hydrocephalus when I was 22 weeks pregnant. I remember it clearly because it was the week that we went in to find out the sex of the baby. The doctor said, “Congratulations! It’s a girl! However, we have some concerns about the fluid amount in her brain.”
After the initial diagnosis, I spent time researching information on hydrocephalus. I found the Hydrocephalus Association via a GOOGLE search.
HA: How has HA made an impact on your life?
DEBORAH: There were times earlier in our journey that I felt as if I was the only one who had a child with hydrocephalus, and that no one TRULY understood what it was like. Through these early struggles, HA was an amazing resource and sounding board. I was fortunate to be granted a scholarship to attend a HA conference and meet many, many families who could relate and share their stories.
HA: What is your involvement with HA?
DEBORAH: When we lived in Tacoma, WA, our family was part of the Children’s Hydrocephalus Support Group, a joint support group between HA and Seattle Children’s. We participated in a WALK in Virginia when my husband was stationed at Andrews AFB in Maryland. We got military orders to Alabama, and in 2008 I was a co-chair for the first ever WALK in Alabama, which raised nearly $20,000. In the past, I have been contacted by the HA to reach out or answer questions from other families.
Side note: I was going to do a WALK in Spokane, WA, this year…but my husband got orders to Kentucky.
HA: What message would you like to send to parents who have a child who has recently been diagnosed with hydrocephalus?
DEBORAH: You are NOT alone. Learn all you can about hydrocephalus because you are your child’s best advocate.
HA: How has being a military family made your experience unique?
DEBORAH: As a military family, we have Tricare Prime for our medical insurance. We have never had to worry about insurance and if it will cover any of Adora’s brain or eye surgeries. At the same time, due to my husband’s military career, we have had to make several moves. I have contacted HA before each move for available resources in the next city. In addition, other HA members in the transferring city have contacted me via email. These families have been great with names of doctors and specialists who work with children with hydrocephalus.
HA: What message would you like to send to the founders of HA?
DEBORAH: Thank you. Thank you for being proactive and starting the association. Thank you for not taking “I don’t know” for an answer.
HA: Can you share a favorite memory from an HA event or an interaction with the association that is special to you?
DEBORAH: Just recently I had the pleasure of chatting with Amanda Garzon of the HA via email and on the phone. She has been a great sounding board for me during my questions regarding tools for school for my daughter. In addition to being a mother of a daughter with hydrocephalus, she has been a military spouse, so she can truly “walk in my shoes.”
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
DEBORAH: I would have to say it’s a tie between the WALKS and the resource library. The WALKS are a great awareness tool and also provide an opportunity for those with hydrocephalus, and those without, to come together for a good cause.
HA: What else would you like to see HA do?
DEBORAH: Hydrocephalus affects all types of people. Continue to reach out to rural communities who may not necessarily have access to the internet to find the resources they need about hydrocephalus.
HA: Where would you like to see HA 5 years from now?
DEBORAH: I would love to see an HA coordinator in all the hospitals to be that “face-to-face” resource for families who may need that hug or reassurance when going through the ups and downs that having hydrocephalus can bring.