web analytics

[email protected]

Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Home

What do you think about when you hear the word “home”? Is home a physical place for you, or is it more than that? For me it is not the walls, but what happens in them.

“Love begins at home, and it is not how much we do… but how much love we put in that action.”  Mother Teresa

For Matthew, home is wherever his mat is.

Let me explain…Three years ago in the spring Theresa borrowed and then purchased a NIKKEN seat pad from a friend who raved of the benefit that the rare earth magnets housed inside of the pad in easing the pain of a hurting back while traveling in the car. Theresa was experiencing the same pain and thought she would give it a try. surprisingly it did help and for the next few months the pad resided on an office chair in front of our computer.

That summer we attended the Bi-Annual CHARGE Conference in Costa Mesa, California. Upon arrival at the first hotel we placed the pad on Matt’s wheelchair with the only intent of not having to carry it with the rest of the luggage to the room. That was all it took for Matthew to gain ownership of that mat. Ever since that day, Matthew has taken that mat with him whenever we have gone on a trip. It even gets carted from room to room in our home. When Matthew needs a break and some time to “re-boot”, he lyes on his mat. He even has a specific routine when arriving at a new hotel…grab the mat, drop it between the two double beds to stake his claim on the spot. Now that our family has grown, we usually opt for the larger suite…the first time it threw Matthew off…he quickly recovered and dropped his mat between the bed and the wall.

I have to admit that I was a little skeptical about this whole “magnetic” thing. I even teased Theresa that I could have made one a whole lot cheaper by using the magnets off the refrigerator…but, there is an unusual phenomenon that occurs when Matthew has taken his mat to a room of other special needs kids. One care giver at a conference we were at where Matthew took his mat into a room with several other kids…”I don’t know what is in that thing but all the kids in this room want to lay on it.”

This week I returned home from a very long trip to Greece, Israel and Petra. Three weeks was a very long time to be away from my young family. Home for me was seeing my wife of 19 years, and my 4 children pulling up in our ever-growing older van with ever-increasing exhaust leak. Home was sitting in the back seat with our youngest, Sarah Anne, who stroked my arm the whole 30 minute drive home just to make sure I was still there. Home was listening to Matthew making “happy” noises all the way to our house. Home was answering questions and telling stories of sights seen with Hannah and Megan. Home was walking in our house to the non-stop barking of our two dogs who could barely contain themselves.

“A man travels the world over in search of what he needs and returns home to find it.”  George Moore

Home was watching Matthew run up the stairs and go straight for his mat, plop down, and “re-boot”.

1 Comment

  1. Arlene

    Kevin,
    You will need to borrow that mat after a week of hanging lights and getting ready for FOL. Maybe I can borrow it to re-boot also?

Comments are closed.