Looking Back…Moving Forward: You’re Not In This Alone

As we look back and commemorate 30 years of supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. This week Jennifer Bechard, our Support Group Liaison, sits down with our Virginia Support Group Leader, Annie Mason.

HA: How did you find HA and why did you decide to volunteer?

ANNIE: In 2003 our daughter was diagnosed with hydrocephalus. Somewhere in the back of my mind I remember my own mother talking about a neighbor’s infant who had “water on the brain” and that they were putting something into her brain to drain the fluid. My husband and I had so many questions and fears. After our neurosurgeon performed an Endoscopic Third Ventriculostomy (ETV) our daughter did quite well, but, as a parent, I wanted more information. After searching the internet for resources I found the Hydrocephalus Association (HA). HA has been a wonderful source for questions and answers. Searching the internet also provided me with connections to other individuals who are dealing with the condition, but many times they were infants or adults living with Normal Pressure Hydrocephalus (NPH). I wanted and needed to find parents and children who were closer to our 13 year-old daughter’s age and eventually I did. Through email and phone conversations I asked where my husband and I could find a support group in Virginia. The answer was “there are none.” Shortly after our daughter’s second ETV surgery I partnered with the Hydrocephalus Association to start and lead the support group in Virginia.

HA: What resource has been most valuable for you and your family?

ANNIE: Our daughter’s neurosurgeon handed me a booklet on the day we had our consultation before her surgery in 2005. I was so distraught that I could not look at it for weeks. As she continued to do well, and return to her daily routine I came across the booklet and browsed through it. It was an early edition of About Hydrocephalus: A Book for Families. It was after this that I went to the HA website and started to make contact with people at the association.

One of the first things that came to light was a WALK being held in Detroit. I felt compelled to watch the dollars grow, and read the stories about this young 20-yr-old girl who had so many surgeries that it was unimaginable. It gave me such pleasure to join the many who were stepping in to raise funds, raise awareness, and make this condition known to the world. Jennifer Bechard has become such an inspiration to so many, and she was the one who encouraged me to start a support group in Virginia.

Annie (left) with members of the Richmond, VA Support Group

HA: What do you love most about being a support group leader?

ANNIE: Our support group is entering its third year as an established group. We have grown from one attendee at our first meeting to over 50 members who have come to meetings or have joined our closed group on Facebook. The families are awe-inspiring and what I love most is sharing stories of our challenges and discovering that we have so much in common, even as our group services all ages.

HA: What is your most cherished moment or memory?

ANNIE: I love my support group meetings as I have come to know so many families. My most cherished moment, however, will always be my first meeting. It was a dreary, foggy January evening and it turned out that only one lady joined my husband, daughter and me. We started with introducing ourselves around the table. When it came to this woman, whom we had just met, she told the story of her young 5 year-old and it was heart-wrenching. He had been through so much at his young age and this mom just needed someone to talk to who would understand. I let the rest of the evening be a conversation between her and our own daughter who has hydrocephalus. I could see that our daughter, who had recently had surgery and was now entering college, was giving this woman Hope.

HA: What do you feel makes a “great” support group?

ANNIE: Some of our support group meetings have professional speakers, others offer practical topics. But foremost, “support” is what ALL of our meetings are about: hope for better treatment plans; hope for medical advancements; hope for a future with fewer hospital visits; hope for a cure. Sharing our stories and making new relationships through support groups is imperative to giving those affected by this condition a chance to know that they are not in this alone.

HA: If you could send a message to HA, what would it be?

ANNIE: I am so grateful to the Hydrocephalus Association. The fears and apprehension of those early days of diagnosis were alleviated for my husband and me, and especially for our daughter. We have been supported by her doctors, nurses and medical staff. We have also gained essential information from the association established by founding members, Emily Fudge and Cynthia Solomon, and all those who have worked so hard during the last 30 years. Together, we can look forward to a bright future for all the families who face the challenges of hydrocephalus.

 

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