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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

A mom or a mule?

Today we will begin a new chapter with Matthew. In another epic battle with the bureaucracy that is our healthcare insurance system Theresa was able to hear those comforting words: “You have been approved.”

Matthew has been granted a new communication device. One that we have field tested for a month or so and Matthew did really well with. Using the device along with sign language, we had a great time “listening” to him as he explored the pre-installed items and breezing through the familiar pictures and items we were able to input. After nearly a year of red tape it came to a last ditched letter and conversation with an actual person. After hearing the words of approval the insurance representative commented to Theresa in an off-the-record fashion than she admired the way Theresa was advocating for her child. That phone conversation earlier in the week was followed by two more from company representatives that make the device wondering what she did and what she said to go from a “no” for nearly a year to a “yes” and shipped in just a few days. I can assure you that the following quote best describes a lot of parents who have been entrusted with a special needs child:

“From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule…. you are the mother, advocate and protector of a child with a disability.” -Lori Borgman

Note: to read the entire article click on this link: Lori Borgan

This sums up my wife. I admire her determination that sometimes could be mistaken for nagging. I admire her ability to be able to make each of our children and a husband feel like they are the most important. I admire her ability to multi-task and even impress other younger moms in the church nursery on the way she can nurse a baby and change a diaper at the same time, on the same baby.

She does all of this with an amazing super-hero ability. I found these inspiring words from someone who faced incredible odds, even until his last days:

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Christopher Reeves

Too many people build their self-esteem and their identity in their career or job while Theresa is proud of the fact that she is first and foremost a mom and a wife. She is more than just the title of “homemaker” to us. Even if all she did was take care of the home we couldn’t afford her if the reward was monetary. I believe that if Matthew could say a word or two about his mother it would go something like the next quote:

“To the world you may be one person, but to one person you may be the world.” – Heather Cortez

I think that I speak for the rest of us in our family, we agree.