By Drew Null
Co-Chair, Dallas Fort Worth Hydrocephalus WALK
It’s the season after the second Greater DFW WALK. It’s the time we all take a breath and try to reflect on the event and what we could’ve done differently or changes to make for the next year’s event. This is only our second event and I don’t even begin to believe that I know everything there is to know or that I ever will. The thing I have come to learn in the past two years is that you manage what you do know and pray you’re able to manage the things that pop up unexpectedly. This year was a down year for the DFW WALK, our attendance was down a bit and our revenue was significantly down. It’s a time where I could be disappointed and pack it in and let someone else deal with the monumental stress that comes with organizing this event. And I was at that point two days before the WALK this year; I had my letter of resignation prepped and even emailed it to HA’s Director of WALKS and Special Events with the caveat of I realize this is being written two days before the WALK. I’ve spent the last few days reflecting on why I take on this crazy task, and I have gained a great deal of perspective.
When Hawkins was born he was a miracle. Sarah and I prayed for a baby and went through the agony of fertility medicine for over 2 years before we finally got pregnant. So the joy we experienced when he was born was like nothing we’d ever experienced before. But Hawk’s entrance wasn’t without it’s own drama. Hawk decided that he needed to do things on his own time table and was born 5 weeks premature. Because of an underactive liver, he spent 8 days in the NICU to get his bilirubin levels stabilized. As first time parents of what we thought was such a fragile miracle, we were terrified by his NICU stay and it was truly a growing experience. I have always felt the times that Hawk has been in the hospital are my most trying because I don’t have any control over anything that he’s going through and my expertise is irrelevant there. I have to trust on the doctors and other medical professionals to do what is best for my son; not something I do well.
Hawk’s hydrocephalus diagnosis and surgery were an intense whirlwind of 5 days. Monday we were in the pediatrician’s office being given orders for an ultrasound, to a CT on Tuesday. Wednesday brought the neurologist and neurosurgeon as well as being admitted to the hospital for a shunt placement surgery first case Thursday morning. Through the tears and waiting rooms and consultations only one thing ran through my mind; why him? What did he do to deserve this? What had I done that he was suffering for my mistakes by being given a brain that didn’t function correctly that needed to be treated with an archaic intervention that would most likely fail more times than succeed? I never got a good answer from God on that one. Thankfully we were surrounded by a community of friends and family that was constantly lifting our family up in prayer and that was the first time in my life where I actually felt the prayers of others in a physical way. I can’t explain it, but when someone would tell me that they were praying for Hawk or me and Sarah, I could feel something physically that was something I’d never experienced before. Throughout our time that week I felt God telling me two things, “he won’t go anywhere I’m not there,” and, “this pain and suffering isn’t about you or Hawk.” The first statement gave me peace to know that God was confirming what I needed to hear most; that He’d never leave Hawk and He’d be with him in the places I couldn’t go. This was especially comforting when Hawk was taken behind operating room doors I wasn’t allowed in or CT machines where only one parent could go and the mommy card rightfully trumped my daddy anxiety. The second statement really created more anger and confusion for me. Why would God put my beautiful baby boy through this horrible pain if it wasn’t about him? And what did that even mean? Did God intend to infer that Hawk was supposed to suffer so that someone else could benefit? That didn’t seem fair to me. But, my prayer only had two major points; healing and successful surgery, and that God would use Hawk’s pain and suffering for the good of other people.
In comes the Hydrocephalus Association (HA). During Hawk’s surgery and recovery we were searching for a way to plug into other people who were dealing with similar things that we were just learning about. We found HA via an Internet search and requested a call from someone to help us learn more about hydrocephalus and to plug into the local community. We went to our first community group meeting, now known as the community networks, and met a handful of other people who’s children were diagnosed with hydrocephalus or themselves had hydrocephalus. It was a moving experience for me to see that we’re not alone in this struggle and to learn that there were approximately 1 million people in America living with and fighting hydrocephalus. In my early life I was a part of organizing fundraising golf tournaments for my college fraternity and a few other organizations I was affiliated with, so when I heard about the WALK I knew it was for me. I was very surprised to learn that a market as large as DFW didn’t have a WALK and was missing out on the untapped resource of the potential funds to be raised here. I immediately began dialogue with a chair from Houston and Randi Corey, the Director of WALKS and Special Events, on how to get this going in North Texas.
The WALK is a lot of work, it’s a lot of stress, and it’s a lot of hours spent. The WALK is rewarding, it’s beautiful and it’s one of the greatest reasons I think that God told me that Hawk’s pain wasn’t about him. I don’t at all mean to say that God gave Hawk hydrocephalus to get me involved with the WALKs. I don’t believe God operates that way and why Hawk developed hydrocephalus I may never know; and frankly why is unimportant. I walk and I pour hours of blood, sweat, and tears into the WALK because no matter how exhausted, frustrated and outright beat down I may be, when I look out and see the hundreds of people there representing their unique and beautiful struggles and victories, nothing else matters. Going into this year’s WALK I was frustrated, upset and my pride was hurt because we’d not performed as well as we did the year before. That was all about me. The WALK isn’t about money, or attendance or how many corporate sponsors we secure or how many t-shirts we give away. The WALK is about telling ourselves and everyone who will look and listen that we aren’t giving up. Every step of those five thousand kilometers is a definitive, guttural scream of this disease doesn’t define me and I’ll never stop fighting. Descartes summed life and its meaning up in three words, cogito ergo sum; I think, therefore I am. I think these words are especially applicable here. We WALK because we believe, not that we are raising money to fund research to find a cure, but rather we are the cure. Happiness isn’t something you chase, it’s something you are. Peace isn’t a place you find, it’s something you inhabit. The cure for hydrocephalus isn’t a funded project in some laboratory; it’s inside Hawkins and every other friend and co-warrior of his that refuses to allow hydrocephalus to define them. Every shunt revision and CT scan are a culmination of the continued battle cry of “don’t give up, don’t ever give up.” There have been and will be many times in my life where I thought something was too hard or not worth the struggle. Now, I have an example in my life that no matter what life throws at him, nothing is too hard and the struggle is his medium to show the world what strength really is; not a lack of fear or pain. Strength is the ability to go in spite of the fear and the pain. I WALK in honor of the fight and to pay tribute to the warriors who fight the fight every day. I WALK for Hawk; and I WALK for you.
For more information about HA’s WALKS and other events, click here.
Do you want to get involved? Click here to find how!