This post is all about Michael.
His dad works with my husband. His parents would come over and play games with us while his mom was pregnant with him. Dave and I would warn them about how their life was about to change, for the better and sometimes for the worse. But definitely, a lot of things would change.
We tried to tell them of the good and the bad, help prepare them for what was ahead. Only none of us had any idea what was ahead.
When Michael was born, they noticed his skin was a little raw in a couple of places. The doctors took him to the NICU and taped all sorts of monitors to him. As Michael moved and kicked, blisters formed in his skin, and eventually his little heels were raw. And any time they removed the tape, the skin came off along with the tape. Lots of damage was inflicted on poor Michael those first few days before he received the correct care and diagnosis.
They discovered that Michael has EB. That stands for Epidermolysis Bullosa, a genetic skin disorder where his body doesn’t produce collagen 7, which holds the skin together. I can’t help but think it is one of the most horrible diseases there is. He is in pain much of the time. His parents have to be so careful, because the simplest things can cause damage to him. He wears bandages on his hands and feet all the time, because without them, his fingers will scar together and become bent and mittened and eventually, he would lose use of his hands. Much of their lives revolve around daily bandage changes, which is a very delicate process and take two people about an hour to perform. They have to pop his blisters as soon as they are discovered, because they can travel through his skin and inflict damage along the way. He’s had blisters everywhere, including on his eye and in his mouth. And it doesn’t stop with skin on the outside of his body. He’ll never eat solid food because of the damage it would inflict to his mouth and throat. His entire digestive system is very sensitive and prone to damage.Children with this disorder are sometimes called "butterfly children" because their delicate skin is fragile like a butterfly’s wings.
Michael and his parents are such champs. They have handled this year with a strength that I cannot even fathom. They have pulled together in a situation that causes a 75% divorce rate.
I think about those days before Michael was born, as we were warning them about how hard it would be, but also reassuring them about how all of it would be so worth it. It never occured to us that this would be the scenario. This year has turned out so different than they planned. But even with all that, they love their child more than anything. He is a wonderful spirit with the funniest personality.
He’s tough. REAL tough.
And so are they. This picture I took a few months ago really speaks to me… it illustrates, more than any other picture I’ve ever taken, the love of a mother for her child. A tear in his eye, the random clutter in the background of their once immaculate house, the bandages on his hands and feet, and his mother. Peaceful. Strong. Loving him through it all. Letting her world revolve around the son.
(click on picture for a larger version)
Happy birthday, Michael. I hope the coming year is easier than the last.
by Shannon Montez
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