Looking Back…Moving Forward: Moments that Matter

The Hydrocephalus Association (HA) continues its 30th anniversary history series with an interview with our Minnesota Community Support Network leader, Jennifer Bulthuis. Jennifer lives in Maple Grove with her husband, Curt, and their two children, Abby (7) and Jonathan (4). Jonathan was diagnosed with hydrocephalus just days after celebrating his first Christmas. He was six months old at the time. Jennifer became concerned when Jonathan wouldn’t sleep. At the time of his diagnosis he couldn’t sleep longer than eight minutes without waking up screaming and crying. After months of tests and various opinions from a variety of medical professionals, Jennifer and Curt finally had a diagnosis that left them in shock, not knowing what hydrocephalus was or what this meant for Jonathan or their family.

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

JENNIFER: The first year after we learned about Jonathan’s condition was really spent working on getting the best medical care we could find for him, making sure we were doing all that we could, and truly relearning our child. I kept hearing about how many people have hydrocephalus, but even with all the doctor’s visits we still had not met a single person or family with a connection to hydrocephalus. I decided to look on the Hydrocephalus Association’s website to see if there were any groups in my area that I could join. As it turned out, they did not have a group…..yet. I received a call from the support group liaison and was asked to start the group. In my professional life, I am actually a corporate meeting planner, so I decided to put my skills to good use and agreed to start and lead the first Hydrocephalus Association support group in my area!

HA: What do you think support groups do for the hydrocephalus community?

JENNIFER: In addition to the obvious, creating a network for families living with hydrocephalus, this support group really helps our members to realize they are not alone and it gives them a comfortable place where they can talk and share with people who understand.

HA: What has been one of your favorite moments of memories from a past meeting?

JENNIFER: There have been several, but I’ll share a favorite memory that involves a speaker. I contacted a neuropsychologist to speak to our group and the parents were thrilled! We all learned things about how the brain of someone with hydrocephalus may be affected by this condition and things to look out for in school and social situations. I think most of us were unaware of what is involved in executive learning and why this kind of thinking can be a challenge for a person with hydrocephalus. A few days after our meeting I received an email from a group member, her twelve year old daughter was born with hydrocephalus. She said her daughter was starting to struggle in school and that now she had some understanding of why, she had already been in touch with the neuropsychologist’s office to make an appointment, and said the meeting had been life changing for her and her daughter.

HA: What is the most rewarding thing about being a support group leader?

JENNIFER: I started this support group for two reasons. First, I started the support group so that we could educate our family about hydrocephalus and do everything possible to help our son. Second, I wanted Jonathan to meet other children with hydrocephalus and to be able to grow up knowing other kids have this condition too. In 2012, we were at the HA Walk and I was talking to some parents of a young girl who has hydrocephalus. As we continued to talk I watched their daughter walk over to our son, look right at him, and I heard her casually say to Jonathan, “Hey, I have a shunt too!” That was it, that was the moment that made all my hard work of bringing families together worth it. My son will never grow up feeling like he is the only one who has hydrocephalus or who has a shunt, thanks to this incredible group!

HA: What would you say to someone who wants to help and become involved with a support group, but might be hesitant to take that first step?

JENNIFER: To be honest, I never pictured myself as someone who would join a support group, but now I am running one! I would suggest to anyone who is interested in the support group to request information about upcoming meetings, to pick one that has a topic they are interested in, and to try it. There’s no commitment, you don’t have to join anything, and you can come to meetings when it works with your life.

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

JENNIFER: People still ask “what’s hydrocephalus” when I tell them about Jonathan. In 5 years, I would like to see that HA has educated people on hydrocephalus and created a much greater awareness of this condition.

HA: What message do you have for other parents?

JENNIFER: That’s a difficult question because I am definitely not an expert! I’m just a regular person, a wife, a mother of one child without hydrocephalus and one child with hydrocephalus. I would like to think that hydrocephalus does not define us as a family; it’s simply a part of who we are and I am just trying to educate myself so that I can help my son and make the best decisions for our family. There are so many other parents and families out there who are doing the exact same thing.

HA: What message do you have for HA?

JENNIFER: Thank you! HA was the first place I reached out to when I was feeling alone and didn’t know where to turn. I was immediately connected to fabulous resources and encouraged to start the support group. The support they give to our group is outstanding and very much appreciated!