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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

How do I look? How do you “look”?

A diaper decorated tree

Saturday, upon arriving home from helping a friend tile a back splash, I pulled into a well cleared driveway and sidewalk free from snow and ice…compliments of my neighbor who did this in exchange for me fixing their furnace earlier in the day. As I pulled into my parking spot I noticed something dangling in the small tree I had transplanted in our front yard this past Fall. It was white so I was thinking it was one of those plastic grocery bags or perhaps an escaped page from the morning newspaper. Nope, it was a diaper. Yes, a diaper dangling from the branches, apparently a victim of being tossed out the window by our dear Matthew. How do I know it was a work of Matthew? It was a perfectly clean, new diaper…minus the velcro tabs. The only other marks on the diaper were a ragged edge compliments of the snow blower that launched it from the driveway across the sidewalk and onto the final resting place of the tree branch.

As I sat in my car looking at the pristine view of a fresh fallen snow cover I took a moment to think about the past week and all of the things that we consider normal in our home and wonder how we may “look” to a perfect stranger, to our neighbors and sometimes even our own extended family. Here is just a few events of just the past week:

  • Our brand new blinds on our front picture window, $5.00 vinyl ones from the hardware store, lasted just 3 hours before Matthew snapped off the ends of a few of the slats.
  • Matthew, leaving the house in sweatpants, layers of long-sleeved shirts and a sweater in sub freezing weather because he refuses to wear any thing that resembles a coat.
  • Having to give security code clearance to one of Matthew’s caregivers who is back in school after taking a break. She hasn’t been here since the events of this past summer and having to install the biometric fingerprint scanner that requires a scan or a code to exit our home.
  • Matthew developing a new “habit” in the morning of removing his nighttime diaper and sliding under his closed bedroom door into the hallway…almost every morning it lays there just like the morning paper outside a hotel room door.
  • Matthew completely shredding one of his layers on the ride home from dropping off his sisters for a weekend retreat…I mean completely shredding his shirt. I had to include a picture of this accomplishment. There are still shards of it in the van.
  • A two-year old who thinks it is the coolest thing to have a therapy swing hanging from the middle of her brother’s room. She uses it several times a day.
    What is left of Matthew’s shirt

    I could continue with the weirdness that it is our life but sometimes it doesn’t really make sense unless you have had to deal with these kinds of things in your own life. There are many of you out there who have the same kind of life we do and know all too well what I am describing. I had a brief, weak moment of wondering how we might look like to other people.

Just last night Matthew had one of his worse episodes of what can only be described as a night terror. At around 4:00 am we were awakened by him screaming and banging his head against the floor in his room. When trying to console him he continuously signed “go” and pushed us away. This went on for about 15 minutes until I was able to safely grab a hold and “compress” him…hold him tight until he settles down. After a few minutes of getting scratched and kicked in the groin he settled down and his breathing calmed. Different compression techniques seem to help him in many circumstances. A half hour later he was giggling and laughing and was up for the day leaving us scratchy-eyed and with a lack-of-sleep headache for the rest of the day.

How do I “look”?

Although these episodes are very rare they do happen…most of the time we are at home and some do happen while we are out in public. Matthew does appear to look a little different from “normal” and while he is in a wheelchair we are cut a little slack when he acts out or makes weird noises and does his happy slap to the fist near his mouth. I have to hand it to our other friends who are on this same kind of journey…those with Autism, Downs and a host of other syndromes and diagnosis who appear to be “normal” but encounter the same stares and glares from people who don’t know what else to do but to look. If the glares are not enough, some are even brazen enough to make comments like “can’t they control that child?” Believe me, we wish we could. We wish we could take our kids out in clothes instead of pajamas, without a helmet, a wheelchair or walker, without a nebulizer and suction machines, heart monitors, feeding tubes and a suitcase full of supplies. I wish Matthew could walk a straight path from the car to the store or restaurant without having to gather sensory input by licking the bumper of a strangers car…while they are looking.

How do you “look”?

I will stop my rant. What I really wanted to say in this post is to answer the question…How do I look?…How do you “look”? What are our eyes saying when we stare at someone different from us. What are our eyes saying when we look at someone disapprovingly as they handle their children…special needs or not. Our look can speak volumes. Our look can project evil, disdain, condemnation…or our looks can show mercy, reassurance, love and peace.

“Spread love everywhere you go: First of all in your own house…let no one ever come to you without leaving better and happier. Be the living expression of God’s kindness: kindness in your face, kindness in your eyes, kindness in your smile, kindness.” Mother Teresa

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post.


  1. Joel Shank

    Wow. What a message for all parents. This is a great lesson that I will talk with my own kids about. Way to turn this picture around and show that man looks on the outward appearance, but God looks on the heart. Thanks for being so vulnerable in sharing in such a gracious, challenging way.

  2. Phillip

    Kevin – I just happen to stumble across your blog this morning laying in bed in Las Vegas. As I was reading I couldn’t help but weap because of your situation. I don’t have a child or family situation like yours and I don’t know what you or others go through on a regular basis. I do have five healthy kids who need to know the compassion and love you and your family display for Matthew on a daily basis. God blessed me this morning through you. Thank you for reminding us of God’s love. Regardless of the circumstances. Be blessed my brother. Phillip Neal

    1. Anonymous

      Thank you Phillip for your kind words. May you be blessed as well and embrace your 5 everytime you come back home! I will pray that you are blessed while you are away from your family and for each time you return to them…I picture them waiting at the window watching for dad!

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