what have we learned? 2018 HACONNECT National Conference on Hydrocephalus

I walked into my hotel room at 12:15am in the morning on July 1st, and shut the door behind me. Leaning on the door, I took a deep breath and finally let the tears fall freely. The emotions of the weekend flooded over me, and I sat on the floor and stopped fighting it for a solid 10 minutes.
 
Just a couple of hours before, the 2018 HACONNECT National Conference on Hydrocephalus had concluded, with all the participants on the dance floor. As I watched children, teens, neurosurgeons, researchers, HA staff, and family members smiling and laughing as they danced to the “YMCA”, I told myself that THIS. This is why we do this. This is what is important. We might not always have the opportunity to forget about pain, worry, and brain surgery – but we can always make the time to pause life, and connect with those on a parallel path.
 
What have we learned?
We have learned to support and educate patients grasping for answers relating to their own unique diagnosis-- because we are all different. Some of those patients and families are seeking a neurosurgeon that is a good match, while others may discover a shunt valve or product they were unaware of. I attended an excellent session about setting up special needs financial planning, a topic that many families have anxiety about.  As always, there were many sessions relating to symptoms of hydrocephalus, and detailed information about the treatments that are currently available. Patients and caretakers were supported with content related to mental and emotional health challenges that come from battling a chronic illness. In the research keynote, we learned where the future of surgeries and treatments may lead. And we had the opportunity to honor the pioneers of pediatric neurosurgery.
 
In terms of information, we all learned a lot. But the most powerful take-away for me is always learning more about the individuals in the hydrocephalus community, and having the opportunity to connect face to face. I love sitting with people and listening to their story. I was humbled to see the youth supporting each other. The joy and laughter of the kids, as they got out on the dance floor and shook their booties. Seeing parents sharing emotional moments with each other. It was amazing to have two of the girls that I've had the honor of mentoring there at the conference, and to see them connect with each other. I’ll never forget the hug I got from the young man after the relationship panel that I spoke on, or the exclamation by one teenager that I am much taller than I appear on Instagram. All of these moments are lessons. They teach me to be more aware. They show me the resiliency of the people in my community. And they drive me towards love and inspiration.
 
On the days when I cringe at the public nature of my own journey, I go back and read the messages that I have received from so many parents – sometimes only hours after the diagnosis of their child. I think about the terror and pain they are faced with, knowing their precious little one will be undergoing brain surgery. Even though they may find hope and comfort in reading my story, they are often devastated to find that I have had a total of twenty-one brain surgeries.
 
I said it several times that weekend – I will not stand for these children to go through their lives with only the treatment options that we currently have. The diagnosis of hydrocephalus almost always results in brain surgery, because right now the only treatment options are surgical—and often not permanent. I’m going to do everything in my power to make sure that this madness ends with MY generation. Everybody plays a part, and perhaps my part is to share my story and encourage others. But I can also support the ones whose role is in the research department, because they are the silent, unsung heroes in this fight. I believe in their talent, and I choose to believe that we will see advances before the next HACONNECT Conference in 2020 in Houston, TX! 
 
I sincerely hope that many of you will be able to attend the next conference, so I can meet you and hug you in person. If you are unable to attend, there will be opportunities to attend virtually – just like there was this year. As a side note, you can still register on the Hydrocephalus Association’s website, and view over 20 sessions that were live streamed – including my panel discussion on Relationships & Hydrocephalus. https://www.hydroassoc.org/watch-recorded-sessions-from-ha-connect-2018/
 
I have been truly blessed by the support I have received, and I vow to continue to battle.
 
In the famous “Man In the Arena” speech (for which my website is named), Theodore Roosevelt talks about the credit not belonging to the critic, who watches the fight from the sidelines. Instead, he says the credit belongs to the man that is actually IN THE ARENA – bloodied and falling, again and again. Every time I read this incredible statement, it strikes me that the man who is in the arena has made a choice to stay…. And that choice is the catalyst. We all get knocked down again and again in life – but each time, we have a chance to decide to stay in the fight, or bail. And the only way to win is to stay. So, my friends… I hope you choose to stay.
 
Stay strong.
Stay beautiful.
And stay in the arena.
 
It’s where the magic happens.
 
In relentless pursuit,
Amy

---