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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Born to be wild…

Expanding on the “four C’s” of CHARGE Syndrome this week, we will look at the Characteristic Ear, specifically the inner make-up of Matthew’s ears.

As I have shared before, Matthew lacks proper formation of his semicircular canals in his inner ear. For you and I, along with our eyes, they are the central function that gives us our balance and allows us to walk or even stand. The fact that Matthew can stand up or even be able to walk and run is nothing short of a miracle. Think of a time when you had a head cold and your head and ears were “stuffy” and just the act of standing up too fast or leaning forward caused you to be off-balance. It is believed that this is the feeling that Matthew has most of the time. Once the visual impairment is added to the vestibular anomalies mobility seems almost impossible.

Apparently nobody told Matthew how much difficulty he should have standing, walking or climbing…Matthew has given all of us heart palpitations showing us his ability and creativity to climb. I recall a few years back when I received a frantic phone call from Theresa with a play-by-play account of what “your son” had just accomplished; he opened the oven door, climbed on top of the oven, over the counter, used the mail sorter as a ladder to the top of the fridge, stepped from fridge to the top of the microwave above the oven, climbed from the microwave to the top of the upper cabinets to gain access to the puzzle piece he had thrown there. When Theresa found him he was lying down on top of the cabinets happily playing with his long-lost puzzle piece. As Theresa was regaining her normal breathing rythym…I was thinking to myself, that’s my boy.

Special needs aside, Matthew is still a boy and will still act like a boy. John Eldridge in his book Wild at Heart sums it up well:

“Little boys yearn to know they are powerful, they are dangerous, they are someone to be reckoned with. How many parents have tried in vain to prevent little Timmy from playing with guns? Give it up. If you do not supply a boy with weapons, he will make them from whatever materials are at hand. My boys chew their graham crackers into the shape of hand guns at the breakfast table. Every stick or fallen branch is a spear, or better, a bazooka. Despite what many modern educators would say, this is not a psychological disaster brought on by violent television or chemical imbalance. Aggression is part of the masculine design, we are hardwired for it. If we believe that man is made in the image if God, then we would do well to remember that ‘the LORD is a warrior; the LORD is his name’ Exodus 15:3

I was challenged further in Wild at Heart as John strengthened his argument:

“The problem with men, we are told, is that they don’t know how to keep their promises, be spiritual leaders, talk to their wives, or raise their children. But, if they will try really hard, they can reach the lofty summit of becoming…a nice guy….Now in all your boyhood dreams growing up, did you ever dream of becoming a nice guy? Ladies, was the Prince of your dreams dashing…or merely nice?…Deep in his heart, every man longs for a battle to fight, and adventure to live, and a beauty to rescue. That is how he bears the image of God; that is what God made him to be.”

When Matthew does something that makes our heart race I am reminded of the times I sled down our neighbors driveway when I was a boy. We couldn’t just slide down the long driveway for the thrill of the wind in our hair. No, we had to add the element of a person on our back, fighting the whole way down trying to knock each other off the side of the drive. I remember jumping bikes over creeks, climbing trees, building forts, making sprawling cities in the sandbox…those were the days.

Matthew, every time you do something that makes you every bit a boy…you make be want to be more than just a nice guy. You make me, all the more, want to …”bear the image of God.”

  • Cindy Martin

    Finally! A wonderful article on Matthew, who is much like my Grandbaby Caleb. (who has Charge also) Caleb is almost 5 years old, quite adventurous, and has many times given his Grammy heart palpitations! This last year he has learned to walk, climb, and his favorite thing to do is bang cupboards… oh yes, he is my gift from God, God knew just what I needed when he gave us Caleb.

    • Oh, yes…they are definitely gifts! Thank you for sharing your experiences. Matthew loves to bang stuff, anything loud so he can hear it.

  • Debby Henry

    Kevin, It truly does seem to be a miracle that Matthew can do all that he does! Theresa must have been mighty scared. But what a blessing this young man is! His energy, curiosity and enthusiasim are wonderful attributes and I just know the Lord has a very special plan for his life. He has already touched mine!
    God Bless,
    Debby