Looking Back…Moving Forward: Creating a Sense of Community

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Creating a hydrocephalus communityAs we continue our interview series commemorating our 30th anniversary, this week Jennifer Bechard, our Support Group Liaison, sits down with our Charlotte, NC Support Group Leader, Summer Minchew. Summer’s son was diagnosed with hydrocephalus at 14 weeks old. Summer shares her vision of creating a hydrocephalus community that supports one another and inspires each other to raise awareness about hydrocephalus.

HA: How did you find the Hydrocephalus Association and what or who drove you to start a support group in your state?

SUMMER: I found the Hydrocephalus Association (HA) at the family library located in the children’s hospital where my son was staying post-op. One of our nurses recommended we ask the librarian for information on hydrocephalus. The librarian put together a very helpful packet of information including a few pages printed from the HA website. Like most parents, up until his diagnosis I had never heard of hydrocephalus. In my case, my son’s diagnosis and emergency surgery to install his shunt happened on the same day when he was 14 weeks old. I was terrified. I had no idea medically what the outcomes of his surgery would be, how he would live with his condition and what resources were available to our family. I found the information on the Hydrocephalus Association’s website helpful and, because I believe that knowledge, is power I also found it very comforting. I wanted to be involved as a support group leader because I saw it as an opportunity to both meet and connect with other parents and families who were going through the same thing and to facilitate the same meaningful exchange in the lives of others.

HA: What do you feel is the most important thing individuals get from being a part of a support group network?

SUMMER: One of my main goals for our group is to move beyond the bounds of a traditional “support group” mentality and really become a “hydrocephalus community.” I think that while sharing your own story can be therapeutic and that we learn something by hearing the stories of others, what we are all seeking is a sense of community. It is about knowing these people and knowing that they have your back and you have theirs. As a community group, perhaps we can inspire others to join us who may shy away from a traditional support group setting. I try to plan events that are fun and foster that sense of community gathering. For example this year we had a post-holiday mixer and re-gift silent auction (all proceeds went to HA) and we held our second annual family and friends picnic in the summer where we kicked off festivities for the inaugural Charlotte WALK event taking place this fall.

HA: What is your most cherished moment/memory from a past support group meeting or get-together?

SUMMER: I think it is really cool to see my son (who is now two years old) playing with other children in the group who are also effected by hydrocephalus. We are so fortunate in that our son is healthy and is on track developmentally and if all goes well, most people would never know he has a medical condition of any kind. But it means a lot to me as a parent to know that he has and will have peers in this group who also have hydrocephalus that he can talk to and relate to as he grows up.

HA: What do you feel keeps a support group growing and thriving?

SUMMER: Communication and promotion are key elements to keeping a support group growing and thriving. Our regular attendees and their families have been great about attending meetings and events, often times traveling over an hour to do so, but one issue that our group has faced is how to make people aware of our events and how to encourage them to attend. I believe that the next stage in growing our group and making sure that we continue to thrive is communicating our efforts and events through outreach and awareness. I think that the most important reason for any group to grow and thrive is so that we can always be a resource of education, advocacy and support to others affected by hydrocephalus. I want to capture the attention of those moms who are “Googling” hydrocephalus at 2 a.m. from their child’s hospital room. I want them to know that there are people in their area who have gone through similar situations and that they have a group of people to support them.

HA: Where would you like to see the Hydrocephalus Association 5 years from now?

SUMMER: I would like to see awareness of hydrocephalus and funding for hydrocephalus research increase to the level of other conditions with similar prevalence. For example (taken from the HA website): Total NIH funding for hydrocephalus research in 2011 was only $6.4M. By comparison, NIH funded $151M in Parkinson’s disease research which has a similar prevalence in the population. That is 23 times more funding. To me this number is staggering. I ask myself, “How can I promote awareness and inspire others to do the same? How much money can I raise at the annual WALK event and at other events? How can I best inspire others to take action as well?” I wanted to be group leader to act as an advocate, to promote awareness both within the hydrocephalus community and beyond, and I wanted to create a group that would inspire others to do so as well.

HA: What advice would you give to a parent whose child was newly diagnosed with hydrocephalus?

SUMMER: When I think back to my son’s diagnosis and surgery I just remember the fear and the anxiety. As a parent, you want the very best that life has to offer your kids. This diagnosis can be such a shock to that ideal. Knowing that outcomes differ so widely depending on the age of diagnosis and the cause of hydrocephalus – and frankly the individual themselves – and how their own body reacts to the shunt or surgery. I would tell parents whose children have recently been diagnosed to take it day by day. I would tell them to keep in mind that there are many great outcomes for these kids, that what seems like a life altering condition may very well just become something that they learn to live with and thrive with, despite having. The hydro-parents and siblings I have met are some of the most watchful, vigilant and caring family units I have ever seen. They inspire me. Sometimes adversity makes you strong. Sometimes it turns you in to a better person than you were before. You just have to live through it.

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