- Born: July 18, 2019
July 18th, 2019 my wife Chelsea, daughter Everly, and I welcomed our son/brother Brooks into this world. Yes, our son. Can you believe it? A boy. I grew up in a family of girls and married into a family of girls. I think anyone who knew us pretty much thought that I was going to be a #girldad, but after having Everly, that was something I was totally happy and content with. With that said, if I’m being honest—it felt amazing to hear that we were having a boy—man was I pumped up-- here comes my quarterback, my point guard, my best friend, my little guy that I’m going to coach through life.
We knew our lives would change as every parent is aware of the drastic lifestyle change that occurs after having a child. We were told two would be easy, I mean come on, it’s man on man coverage, wait until you have three and have to switch to zone, or 4 and need to call out different zone coverages based on the situation, but on this day our lives changed forever and it’s not easy for the average person to relate.
I was asked to share a short story maybe a paragraph or two of our “story”. I’m not sure how to put the last 11 months, 10+ hospital stays, 100+ hours of EEGs, 100+ injections, 100+ medications, 100+seizures, 100+ restless nights, etc, etc into words. It would be the longest chapter book series known to humankind... But let me touch on a few topics that I was asked to share about; 1.- when our journey began, 2.-how our lives have been affected, and 3.- why we advocate for the future.
Question 1: Our journey began on July 18th but officially began on July 25th when Chelsea went to see a lactation specialist because Brooks was becoming lethargic, his feeding was not going as well the past few days, and his reflux seemed to be off the chain. That morning I received a call on my cell and it was Chelsea, in tears, stating-it’s happening again (side note: our daughter also took an ambulance ride to Children’s when she was a day old and had surgery at two days old. We spent a few weeks in the NICU but all is well now and we couldn’t be happier), I can’t believe it, I’m in the ambulance with Brooks and we are headed to the emergency room at Children’s hospital in Minneapolis. Please drop Evy off at your parent’s place and meet me in the ER as soon as possible, it’s not reflux it’s seizures. Brooks is having seizures and they are getting worse and lasting longer and they are doing everything they can to control them.
The next few hours felt like days and the days felt like years but after 5 days we couldn’t determine the cause of the seizures and we were able to gain decent control with a few meds and decided to do genetic testing to see if anything shows up but if not maybe it was just a metabolic imbalance and we are good now. Let’s not “rock the boat”.
A couple days later Chelsea comes running down into my office. She puts her phone down on my desk and hits the speaker phone. It was Genetics they believe they found a variation in a gene that could be causing the seizures. I heard her say SCN2A and I typed it into the computer instantly, she continued to talk for about 30 minutes, but I don’t remember the rest of what was said. Rather, I was just reading everything I could find on SCN2A. Chelsea went upstairs and went for a walk and I sat in my office with a numb feeling all over my body. Chelsea and I have been together for over 12 years and she has only seen me cry once. That day, alone in my office, behind the scenes, I lost all control as I began to imagine our life and future raising a kid with special needs.
Question 2: How have our lives been affected? Ha, how haven’t they? That might be a better question but what I always go back on is the quote: Life is 10% what happens to you and 90% how you react to it. I am not the best at living out that quote, but my wife is, and I thank God for her every damn day. The divorce rate for couples who have kids with special needs is over 85% and it is easy to see why. When most parents are making their 1 year well child appointment for their little one and we are making over 11 follow up appointments with specialty doctors, still waking up every 3-4 hours at night, giving meds 3 times a day, working on physical therapy exercises, working on occupational therapy exercises, speech exercises, I mean the list goes on and on. Then we also need to go to work and be great parents for our daughter; it’s a lot AND a great spouse for each other. It’s not easy, life isn’t easy, everyone is going through their own struggles and luckily, I have a wife who reminds me every day that we get to choose how we react to life every morning. It can be a rocky path to navigate at first but once you make that decision to be a team and attack this together to give your little one the best life possible then you will see that your relationship will not only survive but will thrive. We have experienced a love that we never knew existed since Brooks has entered our lives and it has only helped us all share that love with each other as a family. I realized I still have not answered the question so in short, our lives continue to be affected every day, it is how we choose to react to it that matters. We have learned that we are no longer living for our own selfish wants, the life that we planned has changed, we are not in control, but the one thing that remains constant is the choice to live out God’s mission. Which, to us, is love and to be loved, as well as help everyone we interact with get to heaven.
Question 3: Why we advocate for the future? It is simple, we want a better life for every human being. No one chooses the life they are brought into. However, we want everyone to be able to live a life of independence. It is very easy to take the simple pleasures for granted. Often these go unnoticed until you know someone who is impacted by them. We are no longer chasing milestones, but we are celebrating every inch stone that we come by and many of them would not be possible without the advocation from the SCN2A community that has come before us. We have learned what medicines work best for our kids, we have learned what therapies are the most efficient, what adaptive equipment works best, and research is being done to find a true gene therapy so hopefully someday our kids will be able to achieve these milestones and live a life of independence. There has been a lot of leg work done and we can’t ‘stop now. We are just getting started. Biotechnology has made huge strides and we know the future is bright.
Thank you to the SCN2A family for the path you have carved up to this point. We will continue to advocate with you. Let’s live a life of faith rather than fear.