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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Where's Matt?

We have an occurrence every few minutes of every day of our lives in our family that can be refered to as the “where’s Matt?” check. This can be either conscious or subconscious, verbal or non-verbal. Even though Matthew will soon be nine years old his actions and curiosity are much like having a perpetual “terrible two’s” child scenario in our lives.

As Matthew has increased his passion and knowledge of hardware such as privacy locks, hasps, dead bolts, barrel bolts, etc., It has become increasingly difficult to confine him within the walls of our home. The thought of barbed wire and chain link has come to mind but finding the balance between function and the rules and art of home decor has to be put into the equation.

About a week ago Matthew tested the Emergency Broadcast System in our home once again. To set the stage for this event I need to tell you a little bit of information about an obsessive compulsive trait that Matthew has in the area of stashing objects. He is particularly fond of plastic puzzle pieces and enjoys placing them in obscure hiding spots like under the stove, behind the stove, behind the fridge, behind dressers out the windows, off the deck and his most favorite spot, down the register vents. I have since taken steps of installing hardware cloth to the inside of the vents along with screwing them to the floors and walls, but he still finds ways to pry them away. I have had to disassemble our duct work on a few occasions to gain access to remove puzzle pieces he knows are there. To see where I need to take apart the duct work we employ tools such as a digital camera down the vent, mirrors and flashlights. Matthew will not take “no” for an answer, somehow he knows out of the hundreds of puzzle pieces of many colors and shapes which ones are missing and still not accounted for.

“Where’s Matt?” was heard as loud and clear as the siren on top of a squad car. Everyone jumped into action to find the lost. His room, our room, bathroom, downstairs family room…no, he is not in the house!

It was only a 5 minute time frame that felt more like 5 hours. All emotions were rushing through Theresa’s mind while reaching for the cell phone to call 911. While doing this, Hannah proclaimed from the basement…”I found him!”

Another unique gift that Matthew has is an internal GPS system. With this built-in global positioning system, even with his vision impairment, he can negotiate when we are close to home and even miss a turn to get home. Now we know he can find his way down the stairs, the hall, past the bathroom, into the mechanical room, around all of the shelving and boxes, behind a filing cabinet to a six-inch space between the cabinet and the wall…directly under the register vent that services his bedroom. A six-inch space in which he had wedged himself while recovering a beloved puzzle piece.

After heart rates returned to normal, Matthew was extracted and life returned to normal pace, at least for a few minutes before the next “Where’s Matt?” check came around.