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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

The pain passes…

This past week has been one of the most trying for us as a family in a long time. Over the duration of 10 days all six of us have had the flu in some degree…mild to strong. We even had to cancel a trip to the University of Michigan for some pre-testing for Matthew’s heart surgery coming on the first of April. I can’t help but note that Matthew was the quickest to rebound and become himself again…even a brief moment of what we like to call “obnoxiously happy” where he runs up and down our hallway flapping his arms, shrieking and laughing along the way.

Matthew having a Heart Echo procedure

I think that I speak for all parents that it is amazing how a glassy-eyed, fever rich and I will add a child with “fever breath” as Theresa calls it (must be a mom thing) can go from these symptoms to up and playing with just a little fever reducer and about an hour. We have even noticed with Matthew that sometimes he has even worked through the pain and still played after a surgery or immediately after a procedure.

French painter Auguste Renoir in his last 14 years of his life battled with crippling arthritis. The last ten years he was alive he became good friends with Henri Matisse, another artist who was nearly 28 years younger, who visited him everyday. The arthritis in Renoir’s hands was so crippling and painful that he could not pick up a brush on his own…only after another placed a brush in his hand was he able to move the brush across the canvas. One afternoon while watching Renoir struggle with immense pain, Matisse blurted out: “Auguste, why do you continue to paint when you are in such agony?” Renoir replied: “The pain passes but the beauty remains.”

Have you ever been so passionate about something that you were willing to “work through the pain?” I have always been drawn to those human interest stories while watching the Olympics where they will look at an athletes life…how they overcame immense obstacles and worked through the pain of tragedy and training to finally make it to the medals stand.

What about the rest of us? Are you…or am I so passionate about something that I am willing to work through the pain to get results? This thought doesn’t always go with sports…it can apply to our everyday lives as well.

As we approach this surgery on Matthew’s heart we have been “working through the pain” of the decision to do it. At first, when Matthew was very young we faced two options…one was a valve replacement…either a mechanical or one from a pigs heart. This type of surgery is very effective but has some negatives that made that option a harder one for us. A replacement meant a life-time of drugs (thinners, anti-rejection, etc.), blood tests regularly and the ever present danger of a nasty bump causing bleeding we could not see. The second option, one that is hard for most people to understand who are not in this position…is to do nothing. The pro’s and con’s boil down to a quantity of life versus a quality of life for Matthew. The first option would, in theory, give Matthew a longer life granted that everything went well. It also would mean that he would be faced with a regime of drugs, even more doctors visits and limited activities…all things that he would simply not understand nor tolerate well. The option of doing nothing would allow Matthew to enjoy his happy life he has now, leaving us with the pain of a shorter time with him.

I know that this is heavy stuff…but it does get better. As we worked through that pain…beauty shone through. Explained only as the fingertips of God touching the situation, miraculously we were given a third option, repairing the valve. As Matthew grew, the valve began to take shape and the doctors are now able to see something that was not visible before. We are now exercising the third option of repairing the valve…even if the repair is not perfect it will still be his natural valve and will improve not only the quality of life but the quantity of life in the long run.

“God does nothing except in response to believing prayer.”  John Wesley

We thank you for your continued prayer as we are led into this next step with Matthew. May God be glorified when we are able to rejoice when it is done!

  • Beverly Meyer

    A very inspiring story. I wish him a successful surgery and speedy recovery. God Bless your family. I will keep him in my prayers this week and especially on friday.