7 Lessons From The Community of Disability

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.

1. God is both sovereign and good.

When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth. (Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

2. You have been brought into this community for a purpose.

I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.

3. Disability magnifies our vision for joy in the smallest things.

Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.

4. Community brings much needed perspective

As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.

5. Outspoken men are often minorities.

While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place.

It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical.

I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se).

I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

Cleaning Urine and Praising God

It was Christmas—and there I was on my hands and knees in the bathroom, cleaning up urine…again.

“I’m getting too old for this.”

The scrubbing becomes more fervent as a wallowing sigh of “Why me?” escapes from my heart and a few self-pitying tears fall to the floor mixing with the mess from my teenage son’s latest “accomplishment.”

Suddenly, I’m caught off guard by the unexpected, comforting presence of the Almighty. My mood changes, my heart warms, and the hard tile floor become soft under my knees. I close my eyes, smile and whisper a verbal surrender, “Thank You.”

The smell of urine is miraculously transformed into the sweet aroma of God’s mercy and grace.

Weeping and talking to God while soaking up a urine-puddled floor with fragments of disintegrating toilet paper could be mistaken for mild hysteria, unless I took you back about nineteen years into the life of my disabled son.

That’s when I changed my first diaper as a new dad. I can still remember the smell of baby powder and Desitin as I gingerly picked Jake’s two little feet off the changing table with one hand, nervously lifting them into the air and wiping while my wife coached me through the entire event, “Your doing fine.” She encouraged. “You’re not going to break him. Get every crease and crevice, you don’t want him to get a rash.”

I was like a medical intern nervously fidgeting over my first patient as the doctor observed and instructed.

After a while I got used to it. I even became good at it.

Sometimes I would play a game with Jake where I set a timer and acted like a calf-roper at a rodeo, “GO! And the diaper is OFF! And the butt is CLEANED! And the new diaper is ON!” I would throw my hands into the air when I completed the cinch and yell, “TIME!” Jake would always grin at my diaper wrangling antics.

As the months went by I considered myself a professional diaper changer—if there were such a thing. I could literally change my son’s diaper with one hand while talking on the phone and flipping through the channels with the remote between cartoons and kid’s shows.

Then the months turned into years and we eventually began the tedious process of toilet training. But Jake didn’t get it. His cerebral palsy left him with little control and autism stole away any personal concern for soiling his pants. To make matters worse Jake suffered from a terrible sensory integration issue that made him fearful of bathrooms, running water or being naked.

As the years passed, Jake’s disabilities became more and more profound and the daily, hourly fight to toilet train was eventually abandoned for bigger diapers and boxes upon boxes of baby wipes. The house took on the smell of an unkempt care facility and accidents became more and more graphic from urine stained pants, socks and shoes to fecal matter smeared on walls and in hair.

Jake became less cooperative and more violent with every birthday—he hated being cleaned.

Diaper changing became a time of prayer and pleading with God, “You don’t have to heal every disability of my son, but could you just let him be able to use the bathroom in the toilet? I can take the non-verbal autism, PDD, OCD and cerebral palsy, but I don’t think I can change another diaper!”

But I was wrong. I could change many more—thousands more.

And then, through a rather miraculous turn of events, after years and years of changing thousands and thousands of diapers, God answered our prayers. Jake was seventeen years old when he first used the toilet, and by the time he turned 18 he could go on his own. Accidents were still common, but he got it. He finally got it!

I remember well the first time he signed “potty” in public. We were in a Wal-Mart Superstore. I rushed him to the men’s room and he pulled down his pants on his own and began peeing. He peed all over the seat, the wall and the stall. He was laughing and jumping up and down while urine streamed like water from a lawn sprinkler. I was laughing and crying and praising God. Not one drop went into the toilet, but Jake wore underwear that day and his pants stayed dry.

So here I am. It’s Christmas. Jake is Nineteen years old. The entire extended family is gathered around the table eating a Christmas feast and talking about their kid’s amazing accomplishments and events, from scholarships to dean’s lists to upcoming weddings.

And I’m on my hands and knees on the bathroom floor—cleaning up urine again…and praising God.