Be a Part of the Story

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“It might be exactly what someone needs to hear when they need to hear it”

Photo by Chris Glenn

“Everyone is part of a story. Even when you are down in the dumps, beat yourself up, and threaten to collapse in on yourself, sometimes it helps to remember that there’s a larger story at work, and you are a part of it. You’re not the main character, but instead, you’re a small piece of something greater that will only unfold with time.

Our family has always believed this. We believed it when we felt called to take in foster children in need. Before finally taking the plunge, we tried to talk ourselves out of it for a good six months. But deep down, we both knew as soon as we saw a presentation on foster parenting at church, that our family and spare bedroom was meant to do this.

Photos by Chris Glenn

It definitely wasn’t easy — after training on a Tuesday and receiving our license to foster on Wednesday, a 10-month-old arrived at our doorstep on Friday. They really don’t train you in how to start — they quite literally just handed her to us without even knowing if she had eaten and wished us luck. The first ten months were probably the hardest part of our marriage to date.

Today, however, we wouldn’t have it any other way. Fast forward seven years, and we’ve had seven long-term placements, adopted one wonderful girl named Audrey, and are planning to adopt a boy that originally came to us at just two-weeks old. Along with our two biological children, Beckett, and Lila, we could not be a happier family.

When Beckett first began his health journey, however, it took a while for us to remember that story.

Beckett is everything you would want in a 10-year-old boy. He’s funny, kind, inquisitive, and super smart with an insatiable desire for learning. At the age of two, he was putting together puzzles, and at 10 he can easily get through any expert level Sudoku puzzle you throw at him. In school one year, he competed in a speech competition and got the highest score of any child at his level. Most importantly, though, he always relished being the big brother — a role model for his siblings to look up to.

Photos by Chris Glenn

Over a two-week period in 2019, we noticed short moments where Beckett didn’t respond and seemed confused. If you asked him a question, you’d think he was staring off into space as kids sometimes do, but it was out of character for him and frequent enough to be noticeable. Then, the day before Halloween while eating dinner, we saw what we would learn later was one of his bigger seizures. As anyone who has seen a seizure knows, it can be frightening if you don’t know what to expect. We immediately scheduled a doctor appointment, and the day of the appointment he had another one at school. The ER referred us to a neurologist, and in the week-long waiting period for that appointment, Beckett had 13 more.

At his peak, Beckett was having about 100 seizures a day. The first medicine he tried seemed to eliminate them entirely for six weeks, but just a short time later, they came back stronger and more frequent than ever. During a seizure, he had absolutely no control over anything he did. He would speak gibberish, climb on furniture, and in the car, he would sometimes unbuckle his seatbelt and stand in the seat. One time he even opened his car door and tried to get out at a red light. In total we tried seven different medications, and each one resulted in failure.

The ordeal began taking a toll on Beckett’s emotional state, as well. The parts of the brain most affected by his seizures control brain functions such as short-term memory and emotional response. Some things that used to bring him so much joy, like Christmas morning, no longer had any effect. At times, it felt like we were mourning the loss of our own child who was still with us. We would look at old pictures of all of us smiling and happy, and all we could think was we missed our little boy – we all did, especially Lila and Audrey, who would even cry into the night worrying about their brother.

According to his test results, he was experiencing seizures independently in four different parts of the brain, and the frequency of them meant that his brain was slowly deteriorating. To slow this process, it was determined that the best course of action was to implant a device called a Responsive NeuroStimulator, into his skull to help regulate the seizures. Normally this action is reserved for people at least 18 years old, but Beckett’s case was severe enough to make an exception.

Once the device is turned on, it slowly learns the brain patterns that telegraph when a seizure is going to occur and sends electrical impulses to counteract it. The device was successfully implanted in December and turned on in late February. In early March, the frequency was the worse it had ever been, but after that it started to work. The results were dramatic. Today, we see about 10 seizures a week.

We really only saw this change a few months ago, so we’re still getting used to seeing our 10-year-old boy being a 10-year-old boy again. To see him here at Give Kids The World smiling and being free is such a joy. We originally found out we were coming back in September, but Beckett could barely acknowledge what was happening. But as the date got closer, and the stimulator began to work, we got to see our boy slowly come back into himself.

Beckett wants to be an engineer someday, so, the moment we told him we were getting a behind-the scenes look at Universal’s new ‘VelociCoaster,’ that’s when the excitement really took off. It was the happiest we had seen him since before the seizures began. He was so excited that he even climbed onto the couch and began jumping for joy – that was a special moment.

Give Kids The World helped us see the boy who for a while we thought we had lost. He’s eating ice cream, playing putt-putt, running from ride to ride — watching him come back resembling the kid we remember is enough to bring tears to our eyes. And we even got to have some fun of our own, turning into fanboys, and meeting the designer of Hagrid’s Magical Creatures Motorbike Adventure – we’re big Harry Potter fans.

Photos by Chris Glenn

Through all of this, we have come to realize and accept that we can’t control the situations we are put into. What we can control, however, is how we react to them. What happened to Beckett was something we could have never imagined, but at the end of it, there’s an amazing story to be told, that is still being told. A story that might help someone else who may be going through something of their own. We believe this with all our heart. Beckett, like all of us, was put on this earth to help others, to be a part of something bigger.

If you ever feel afraid to share your story, don’t be. It might be exactly what someone needs to hear when they need to hear it.”

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