Nearly 3 ½ years ago we excitedly went to the big 20 week ultrasound. The time where we could finally breathe easy, see our growing baby take shape and find out if we were buying pink or blue. We’ll never forget that initial excitement of finding out we’d be adding another boy to our bunch … nor the silence that followed. The ultrasound was over and we were asked to move to the “Consult Room.” Here we got the news of enlarged ventricles, possible underdeveloped brain tissue and the emergent need to see a Maternal Fetal Medicine specialist. In the next few days, the conversations about outcome were agonizing. “Quality of life” was a measuring stick, an unknown, and brought the required medical opinions, including ending the pregnancy. The latter never being an option, all we could do was pray and wait.
Fast forward 20 weeks, Will was born on March 13, 2013. He is handsome and perfect. We were prepared (as much as we could be) for Will to have brain surgery to have a shunt placed shortly after birth. The time comes and we hand our baby over to the nurses at the cold door of the operating room. A short time later, Will has his shunt. That should fix everything. Will seemed to be doing great. At first.
We began to notice he was not meeting his milestones. For Will, hydrocephalus presented itself in gross motor skill delays. PT has been an essential part of his progress, but we still faced our share of scares along the way – seizures, fevers, refusal to walk for no medical or logical reason. Will may always face challenges, but we thank God every day that he is doing as well as he is. He is an amazing boy who truly brings a smile to the face of everyone he meets. He’s very intelligent, well spoken, outgoing and kind. He’s been referred to as the “Mayor” of our small town of Gordon, PA.
Several months ago, a dear friend of our family gave us a packet of information about hydrocephalus that she received after contacting someone at the Hydrocephalus Association (HA). Along with helpful info and facts about hydrocephalus, were some papers about last year’s Central PA WALK. We knew this was something we wanted to be involved in. It wasn’t until planning Will’s 3rd birthday party that we realized how big this could actually become. This year we sent out his Toy Story birthday party invites and asked family to donate to HA in lieu of gifts. The entire community has shown such generosity and support towards our fundraising efforts thus far. It’s absolutely astonishing! We certainly weren’t expecting so many people to join our WALK team, Will’s Warriors. We have such a strong support system to help us cope day to day and we couldn’t be more grateful.
Hydrocephalus is humbling, shocking, discouraging and frustrating. That is why this WALK and supporting HA is so important to us. We all need answers. We need more research, better treatment options and more education.
We look forward to his WALK on September 17th at the Hershey Medical Center East Campus and meeting other families of children with this condition. It is a reminder that we are not alone and that so many of us are dedicated to creating awareness and support for people with hydrocephalus. We are extremely blessed to be the parents of such an amazing boy who, in just 3 short years, has touched the lives of so many people. This will be a lifelong journey and we’re not going to forget where this condition can lead, what extreme hardships it can bring and the unknown range of those challenges. This solidifies our commitment to find a cure for hydrocephalus. Together, we WILL make a difference!
Heather and Mike Rader