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.
Bless your heart.............
ReplyDeleteI tell my son to "make bubbles" when he pees, the urine stream makes bubbles in the water this has stopped him peeing on the floor, maybe it will help you guys to, heartbreaking and heartwarming blogpost
ReplyDeleteWhat an amazing story.
ReplyDeleteJake is extremely blessed to have you as his father. You are the sweet rendition of our Heavenly Father.........He is most patient with us.
I used to hate washing the kitchen floor......once it was clean, it was inevitable.....someone would walk on it with messy shoes. Then the Lord spoke to my heart......."You're already on your knees....pray for the feet that walk on this floor....pray for their hearts to be drawn to Me, pray for their futures, pray for all who will enter your house, be thankful you have a floor to wash, be a happy servant of the Most High God."
I know my little story doesn't compare to the one you shared......but it's all about Jesus, not us.
So grateful for your sharing.
The intimacy you experience with the Lord Almighty gives such encouragement to us on this similar journey we're traveling. I pray that the Lord works in my heart, as consistently as He has in yours, a distant 16 years from now. Thank you for sharing.
ReplyDeleteOur 14-year old HS freshman girl still requires daily pullup changes and wipes. We smile and relate well to you. She'll go to the bathroom if her mom says "Go sit on the potty" - most of the time. We are prepared for a lifetime - ours, hers - of pullups and wipes. Praise God for all eternity for that gift of painful grace.
ReplyDeleteAnd that leads to your comment: "The smell of urine is miraculously transformed into the sweet aroma of God’s mercy and grace." Hasn't that always been the case? The pain of sacrifice, the aroma of the repulsive, the burning flesh of the animal on the altar yielding the same "sweet aroma" in God's nostrils, per Scripture. Imagine: Our Lord's own first smells were not of baby powder, but likely a dirty feed trough, on the floor of a cold dark cave where the animals were kept.
In an otherwise incomprehensible sense from the unbelieving world, we as parents of special needs individuals have been specially given this privilege of caring for the weak by our Lord.
Wow. Your entry is awesome. You are an awesome father. This makes all of my complaints about changing diapers, being soaked in vomit, and the like seem silly and trivial. Thank you.
ReplyDeleteThis is an awesome post. I have three children with Down syndrome and another on the way (via adoption) in April. Jakes attitude toward toilet training is my 16 year old daughter's attitude about dealing with monthly issues. She doesn't care, so she doesn't manage it, and I don't know until there's a problem. Thank you for putting this all into perspective.
ReplyDeleteYou are a living testimony of God's grace, my friend. Praise Him and may he bless you and your family. My prayers are with you.
ReplyDeleteAh Greg. An old friend pointed me at your blog, which I have just bookmarked. Lee Michael G. said exactly what I want to say. I have never faced the magnitude of your challenges, and you give me comfort. I am SO glad that I'm not the only one who talks to God while cleaning the bathroom!
ReplyDeleteI try, try, try to remember that every interaction I have with my 22-yr-old HFA son is an interaction with Jesus. Mostly, though, it's vice versa. The boy shows me such grace that sometimes I am stunned into private tears.
Thank you! Your post came to mind this week as I cleaned up 2 messy b.m. incidences, the floors, bed, and clothes. God reminded me again of how far we have come in 11 years in our Down Syndrome journey, how many times we have prayed for healing, help,surgeries, felt isolated, and of His goodness to us in giving us our treasure from Heaven. Thank you for helping me give thanks for functioning body parts!
ReplyDeleteMay God be near to you today! HBH
God is right on time....I really needed to read this....my son was seven before he was potty trained, but I still have to remind him to clean himself good which he doesn't do all the time....thanks for sharing your story.
ReplyDeleteOur son is turning 5, has CP and TBI and we have just begun to consider whether he will ever be ready for potty training. As we begin down this path, we need wisdom and perspective, thank you for the encouragement.
ReplyDeleteI feel your Joy and we call it "compassioin fatigue" here...My son is 20 he has spinabifida is paraplegic and if he knew he had to go he could not get him self on the toilet...But God is good and you are not alone, there have been days I did not think I could do it and God gives a nudge and some how we do it, we laugh, we learn just how blessed we are and we thank God every day for the prespective that he has given us on life...
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ReplyDelete