He adores Jayden and Brooklyn, and Ellie too, and has really learned a lot about life from his interactions with them. Over the summer, we were blessed to have him in our house every week for deeper, our mid-week Bible study and I went on a mission trip to San Diego with him. Trever amazes me. Even though he would be the first to admit high school is hard, and he is no where near perfect, he continues to amaze me with his desperate pursuit after Jesus. Trever has a personal conviction to follow Christ and it is beautiful. His family doesn't attend Immanuel, and I am inspired whenever I see a student like Trever, attend youth group on his own. He has found a second home with us, and I am so glad he is family.
For his English essay, he asked us if he could share about our children. With his permission, and our grateful heart, I wanted to share what he wrote.
THIS is why we do youth ministry. HE is why we do youth ministry. It's a DUAL blessing, really.
Trever Carter
Mrs. Schmitz
AP Lang & Comp
4 September 2013
Not So Small Wonder
The rhythmic sound of a bouncing trampoline stays constant from the other room, providing a backdrop to the rest of the organized chaos that echoes through the house. A wagon takes a gentle roll across the hardwood floors, giggles coming from the back seat. There’s a gentle tug on my shorts. I stand in the middle of the room, and can never help but to simply smile. In minutes like this, everything clicks. Life is precious, love is golden, and moments are to be savored.
Jayden and Brooklyn are the source of most of these commonplace noises that radiate throughout the household. These noises of laughter and melodic toys would typically constitute a, by definition, normal life. One protein, however, would change the name of the game for this family. One protein, a building block of a molecule that cannot even be seen without the ten thousand times magnification of a man-made lens, would be the protein that changed the Boyce’s lives forever, and also mine. When Jayden was about three, and Brooklyn newly born, their parents received devastating news of genetic illness. A one in twenty five thousand chance has occurred not once, but twice, and an autosomal recessive disorder would attack those who could barely walk. This news would not only dynamically alter the lives of the Boyce family, but in turn catalyze change in the lives of everyone they met. Sanfillippo Syndrome was the curse, the disease, the diagnosis. This means these kids will grow up with special needs, function drastically lower than their age, and live short lives due to the inability to process this one simple molecule. Sanfillippo is now a word that is hard to hear; it is a word that sends icy shivers down my spine and makes me ask God one simple question, “Why? Why would this happen to a family I love? Why them?” Shortly, however, I would find out.
Now the dwelling these children walk in is a miracle in and of itself, a blessing that epitomizes the positive ramifications of faith. My church reacted to Jayden and Brooklyn’s diagnosis in a way that was to be expected by those who are basically family-- with a burning sympathy and a yearning to do more to help the Boyce’s. And that is exactly what transpired. Over a relatively short amount of time, the people of my community conjugated to raise a plethora of money and to build a handicap accessible home for these two angels. This project was ambitious, a goal that almost seemed to sit on the horizon, just out of reach. Yet with every passing day, week, and month, the horizon seemed to get closer, inviting everyone into its warm embrace. Friends, family, neighbors, and acquaintances-- everyone came together with one thing in common: indescribable and unexplainable love for Jayden and Beeba. To help raise money, many endeavored on trips they thought they would never take. Some overcame an inexplicable fear of public speaking in order to deliver a blueprint of pledges; some went from never running a mile to running thirteen; some jumped out of a plane despite crippling fear of heights. Yet the best of all was that most broke the manacles of self-satisfaction and began to live for others. They gave time out of theirs days to pour cement, lay foundation, and eventually begin to turn a house into a home. I was humbled to see a community morph even more so into a family, coming together to achieve a common goal. The result was an unbreakable bond created through hardship and resilience, as well as a beautiful home for a beautiful family. It truly is a miracle.
Yet the small sets of feet that are running about the house, creating a pitter-patter as they go, are even more of a small wonder to me, both figuratively and literally. Jayden walks off of the trampoline, chewing on his fingers, and takes hold of my hand in his little one. I begin to make funny noises- boops, baps, and whoops- tickling seven year old Jay, telling him I love him: anything to get one of his golden smiles. Four year old Beeba meanders from down the hall, graciously singing ‘Jesus Loves Me’. When I say hello, she gets an ear to ear grin, blushes a red vibrant as a crisp fall apple, and runs to mom or dad. Crossing the room, I pick little toe-headed, blue eyed Ellie up and throw her in the air. Their little sister is just as dear to my heart as Jay and Bee. While Ellie is perfectly healthy, Jayden functions around six years lower than his age, and Beeba functions around two and a half years lower than hers. I still cannot grasp how one small, minute, seemingly invisible molecule could possibly create a six year gap in functionality.
I have learned more about life and love from these kids than I could have ever imagined, and that is why they are such a wonder to me. Knowing these kids and growing to love them has taught me how precious a life is. And that means any life, really, especially those of special needs children. Like a light on a hill, these kids epitomize what it means to truly be special. They giggle, dance, hum, and play. From them, I have learned about genuine love that knows know bound, no stereotype or judgment. I have learned peace, and being content with the hand I have been dealt. I have learned patience, and what it truly means to put it to work. Jayden and Beeba know not what others think: they possess child-like faith in God in which I can only dream about. Stefanie and Jut, their parents, have taught me how to love and cherish a child. To me, these kids are irreplaceable; I love them more than anything. They answer the afore mentioned cry to God, “Why?” They respond by showing me life is not promised or guaranteed, yet it is a gift. There is no cookie cutter guide to the progression of life, yet more of a serpentine path that changes as you go. They have shown me what it means to be special, to value a life, and most importantly to love one another. I look at human nature differently, I view people through a different aperture, and most importantly, I love these kids that much more.
Jayden’s laugh is ranked at the top of my list of my favorite things in the world. One step of intensity above a giggle, a true laugh is not often evoked by me. When it is, my next week is set with smiles every time I think of it. As he climbs next to me on the couch, snuggling up for bed, I think about life. I think of how short it is, to make every moment special and then cherish it. Love is the greatest gift, and I am to give it gladly and share it commonly. I am reminded that God’s plan is not always as happy as we think it should be. It is full of troubles and hardships. Yet life is beautiful in every shape it comes in. So my small wonders are not so small. Though they may weigh less than 100 pounds, they are huge, full of life and love. Jayden and Brooklyn make impacts on everyone they meet, whether or not they will ever come to know it. These angels teach, comfort, and love: every genuine thing a person could want.
