After he was officially diagnosed, the first thing I did was try to reach out to a community. A group that knew what this was, what the prognosis could be, people who had walked in these shoes before. I was disappointed to find that there wasn't really a community local to central Florida. I found groups on Facebook that have been helpful, albeit faceless. I wanted a support group, to look someone in the face and see my potential future. To hear the best and the worst of this world I was now facing. We have had tremendous support from our families and friends. We have prayers from around the globe. When Nicholas winds up in the hospital we get messages and texts and phone calls and offers of help. And each and every one of those is felt and appreciated and held close to our hearts. It would be helpful to also have a place to sit down with other parents or people with hydrocephalus and say what we see and hear what's worked for others. To have someone know that while in most babies crankiness and refusal to eat probably indicates something benign like teething or maybe an ear infection, your heart is terrified that in your hydro baby it means a shunt failure and your child may be in brain surgery tomorrow.
In my research I ended up finding the Hydrocephalus Association. I devoured their educational material. I read each and every success story. I sobbed watching the video about the woman who has had 20 revisions in her 25 years of life (that's 20 brain surgeries!) and whose fiancé stood right by her side as she underwent each of them. And I learned about the Hydrocephalus Association WALK. I became excited because what better place to meet the hydrocephalus community than at a walk! I searched several times and didn't find a walk scheduled in central Florida. I ended up sending an email to the address listed on the page asking when (or if) a walk would be scheduled in central Florida. A few days went by and I finally received a response that a WALK hadn't yet been started here but if I were interested in volunteering to start and chair one they would love to talk to me.
At first I laughed. Me. A full time job, a pre-schooler, and twin babies, one of whom has medical complexities. But the more I thought about it, the more I thought why not me? Often a change starts with a single voice or a single step. This is a major metropolitan area and happens to have one of the best neurosurgeons in the nation. He does over 200 shunt placements a year. Clearly there is a community here of hydrocephalus warriors, why couldn't I be the first person to take a step towards uniting us?
When the event chair from HA called me, I listened to her closely. She explained that of the 35 WALKs nationwide, 100% of them are completely volunteer driven. The WALKs bring in approximately 50% of the Association's annual revenue which goes towards funding research for better and more effective treatments and hopefully eventually a cure. The HA provides training and helps you along the way, but the volunteers bring the walk to life and keep it running. The HA has long wanted to bring a WALK to our area but since it's volunteer driven they needed someone to commit to bringing it in and they haven't had that yet. She told me that if I was interested in getting more information after our conversation she would email me a more detailed description of everything the chair would require. She warned me it would likely be overwhelming and it was designed to come across that way because, though it was very doable, it was a commitment and they wanted us to know that. I agreed to receive the information and look it over. As I read it, rather than become overwhelmed, I felt empowered in the face of a condition that has left Mike and I feeling powerless at times. If I could help just take that first step towards getting this going, I could be part of a force that may eventually make it so no other parent had to deal with this, or no other child had to watch a parent develop this.
Beyond just that, what a fantastic way to help bring together the hydrocephalus community! Perhaps there could be support groups offered, help with understanding hospital bills, a volunteer translator who goes along to doctor appointments and makes sure the parents or patients understand. The possibilities are endless.
We have met several people who have hydrocephalus or are parents of children who have hydrocephalus since Nicholas was born. These are all people yearning to meet others in our shoes.
Provided everything goes smoothly, the HA is shooting for a fall 2016 WALK in central Florida. Keep an eye out for updates!
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