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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

What a difference a day makes

Have you ever had days like this? One of those days where is seems as if everyone wants a piece of you, your time, your abilities? Even though the procedure or tests have their benefits, it doesn’t make it any easier to endure them. In the face of trials and bad days it may seem that the day or the bad experience will never end. But, the sun sets and the sun rises the next day. Somehow, a little distance of time between the event, things look a little better. In reflecting this past week after experiencing Easter, the tale of these two pictures tell the Easter Journey well…What a difference a day Makes! I am sure, to the apostles and those who followed Jesus so closely, the day of and the day after Jesus was put to death were pretty bleak. But, on the third day he rose! There is new life and things do look better. Thankfully, in our case, things look great for eternity!

The pictures of Matt in this post are from the day before Good Friday where he had another EKG and ECHO of his struggling heart. Matt has a leaking mitral valve. This is something that we have been watching since he was born. As time has gone on and he has grown, we have been given good news that the valve may be repairable instead of the conclusion early on that was that they were going to have to replace it with an artificial one. But, no surgery is without risk. At this point, along with his medical “team” from Grand Rapids and the University of Michigan, we are still monitoring and taking some time to contemplate what our next course will be. There are tough decisions that we will have to make on Matt’s behalf on what to do, even if that decision is to do nothing at all. We are looking at quality of life against quantity of life. Please pray for us as we search for the right thing to do.

As for Matthew, he had a great time with the bunny ears. When we tried to remove them, he wanted them back on. We are constantly amazed at how much Matthew is full of life (and mischief) each day. He can quickly go from having a bad day to having the best day of his life in a matter of minutes. I wish I could say the same…