It can be difficult to understand the complexities of raising a child with special needs if this calling is not part of your existence. I get it. I never gave these children or their caregivers a second thought before it became my reality. It’s hard to empathize with a situation without experience.
My goal in writing—in books, blogging and on social media—is to tell stories that portray the complexities of raising a child with special needs: the demanding, the taxing, the beautiful, and the joy.
There is undoubtedly a blessing. These children are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly Father’s love and care for us. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about. BUT—
Raising a child with special needs is also a massively exhausting endeavor.
One of my goals in life is to educate the general public on why they should care—even if it’s not a part of their daily reality.
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40”
Children with special needs are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caregivers, many of these children could not survive.
I would admonish you to care about these children and their families, because you don’t have to care, and that is a superficial perk you did nothing to deserve.
I say “superficial,” because these children also gift us, with immense blessings that are difficult to replicate outside of the holy experience that involves raising an individual who is completely dependent on the sacrificial goodness of others for their wellbeing and prosperity.
Special needs may not be a part of your life, but it is a reality for 16.8 million people, and this reality often includes:
Bathing a grown child
Feeding—either by utensil or tube feeding—often restrained in a special chair
Diapering teenagers
Wondering at times if one day you’ll be diapering a thirty year-old
Restraining a teenager who has become aggressive due to puberty
Entering the local ER in the middle of the night to play a guessing game for the next 24 hours, trying to determine the cause of angst in your non-verbal child
Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts
Attempting to distract a child who is frustrated and displaying self-injurious behavior
Sleeping with a baby monitor beside your head for 18+ years
Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment, or to make sure your child is still alive
Spending the majority of your free time in a doctor or therapist’s office
Not being alone with your spouse in years, because there is no one you trust to care for your child in your absence
Suffering extreme pain and popping Advil like it’s candy, because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.
You should care about caregivers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem.
You should care if you live where resources are plentiful, because there are people who live in rural communities where resources are sorely lacking.
You should care if your children are healthy, because there are parents who manage a child’s chronic illness every day of their lives and wonder if every day may be the last for their child.
You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it—because they do.
Jess Ronne is an author, speaker, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing respite opportunities for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or Facebook/Jessplusthemess or Instagram/Jessplusthemess.
