“Each moment in the life of a parent, with or without a child who has special needs, is a moment that can be used to teach, to serve, to love the lives we live, and to be thankful that we have been given the opportunity and ability to share this beautiful world with our children.”
When living in the world of parenting a child with special needs, life can become a bit stressful. Being an adult, a mother, and a wife is already difficult enough, especially in today’s society where lines are constantly blurred as to what living a Christian lifestyle means and entails.
On top of trying to live a life for God, add the pressure of sustaining a successful marriage, working a job, doing daily household chores, and keeping up with the tasks of life in general, and things can quickly get overwhelming. Additionally, toting the weight of caring for a terminally ill child, with a diagnosis so rare that the doctors and medical professionals who treat your child have not yet seen another case where a child lives long after the pregnancy, let alone to his second birthday, and that certainly equals a daunting set of circumstances to face every day. Long days in the hospital or at doctor’s appointments sometimes feel like wasted time, because no one truly knows your child the way you do.
Don’t get me wrong, doctors are fantastic and should be credited for all their years spent learning their specific field of practice, and they should be appreciated for having the ability to save your child’s life in the blink of an eye. However, coming from a mother’s perspective, no doctor or nurse can ever replace the nurturing, loving, natural instincts that come from a child’s own parents.
As a parents, you know exactly what time your child will wake up in the middle of the night, and you know when your child is about to have a seizure even before they do, because you have memorized that frightened look that suddenly appears on their face. With every sound your child makes, you have the ability to know if they are happy, sad, upset, in pain, or require quick dialing of 9-1-1.
As if being an adult isn’t demanding enough, parenting a child with special needs raises your stress levels even higher. How on earth is it possible to still have the inner strength to walk around with a smile, knowing that just around the corner a seizure or emergency room visit awaits?
Think about trips out in public, perhaps to the grocery store. Have you brushed shoulders with a family who has a child with a disability? Have you noticed the way that family was acting? More than likely, on the outside you will observe a mother or father who displays a smile. You will witness a family that finds a way to turn a challenging trip to the store into an obstacle course in the car buggy, turning every corner as if they are in a high speed race alongside the most famous NASCAR driver.
And what is the point?
The point is actually quite simple. The world of parenting a child with special needs introduces you to new focuses and priorities, and nothing in the world matters more than making your family happy, no matter what it takes. Not only do you learn that there is no reason to begin the day with a negative outlook or expectations, but you don’t have that choice anyway. You’ve already made the decision to love your child unconditionally, regardless of health concerns or limitations that may arise, which means you choose to celebrate and cherish life every day. Your mental state has been altered in a way that can no longer withstand the capacity to look at life’s daily tasks as an annoyance. You may be tired and overwhelmed and heartbroken that your child endures what they do every day, but overall your focus and priority is on keeping your family happy at any cost.
We once looked at the trip to the grocery store as just another errand filled with frustrations like getting stuck behind slow drivers, hitting every red light along the way, waiting behind shoppers clogging the aisles, and choosing the wrong checkout line, which ends up feeling more like you’re in the wrong lane of a barely moving traffic jam. Now, after living the life of a family who has a child with special needs, we view our trip to the grocery store as an opportunity to teach our child. We teach peace by not yelling at every car or red light along the way. We teach reading by browsing the food labels on the items we’re purchasing and will be fueling our bodies with. And we teach about using our imaginations as we transform a boring old shopping cart with a squeaky wheel into a super-fast race car on its way to the finish line.
Each moment in the life of a parent, with or without a child who has special needs, is a moment that can be used to teach, to serve, to love the lives we live, and to be thankful that we have been given the opportunity and ability to share this beautiful world with our children. Our children already go through so much, and the last thing they need in their lives are stressed-out, overwhelmed parents. What they truly need are God-fearing mothers and fathers who use the little moments in life to show love, compassion, and most importantly, patience. This will teach our children, our future generation and our future leaders, how to live well in an often materialistic, tragic, and fast-paced world. This will teach them to appreciate a fulfilling, happy, and peaceful life.
Brandon and Brittany Buell are the parents of Jaxon Emmett Buell and the founders of the Jaxon Strong Facebook community and the Jaxon Strong Foundation. Their story has been featured on Nightline, Today.com, CNN.com, the Huffington Post, and hundreds of other media outlets around the world.