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Waiting for our miracle.
Posted on December 02 2013
But I am different. I’ve buried one of my children. If I made the rules, that would mean I would never have to deal with anything ever again. I don’t, so God gave me more. My husband and I had eight miscarriages. Even still, God gave me more. He gave me miracles, even when doctors said there were none to be had.
You may have met them already. If not, you’ll know them by the light that surrounds their smiles. They tend to bounce into the room. My son has inherited my smart wit and my husband’s dry sense of humor. He will love you like you are his family because after about ten minutes you will be. My daughter will fill your days with her laugh that seems to come from the deepest part of her soul. Her bright blue eyes will tell you everything you need to know. My oldest, well she is me. She is the best of me and then some. She is the light in the darkest of days. You just wait, she's going to change the world.
They look just like everyone else. You’d never know unless you’ve seen our files that “we’re different.” This kind of thing doesn’t happen to families like us. A doctor for a Dad, a Nurse for a Mom, a genetic match in heaven? Our children are beautiful, bright, and well mannered. Two out of three of our children also have a genetic disease that all but paralyzes their immune system. The one that doesn't? Well, she wishes she had it instead. She's the one who's going to change the world. (But watch out for the other two, as well.)
Paralyzed. That’s how I felt the first time I heard their diagnosis. Unfortunately, we had lived over nine years diagnosis free. That also meant we were without the help of a lot of organizations and specialist support. Everyone kept telling us, “They’ll grow out of it.” Some well meaning family said, "Maybe eat more vegetables. Are you sure you are cleaning enough?"
We had my son on every prayer list for almost 8 years. My younger daughter was always sick alongside him but we always asumed that he was sharing germs. We always "hoped" he would indeed grow out of it. It never kept me from asking all of those years, "Are you sure there isn't more here?" I spent countless nights sitting in front of my computer typing in different combinations of his symptoms. I always hoped I would somehow find his cure.
My reality is that my children may never outgrow this. They may never be cured. When I say that I am different and I refer to burying my daughter, it’s because I know that our infections grow worse every time. We walk a fine line with drug resistance and allergic reactions. God grants us a miracle every single time they get better. Sometimes I look at them and I think, even as a nurse, "This is bad, really bad." I see the worry in the doctor's eyes. I know what's between the lines.
Between the lines is our miracle. The miracle is that we even had children. The miracle that we survived years without a diagnosis is another. I'm sure there are other families out there like us. The truth is, my family is just like yours. We really live in our home, my kids leave their toys out and my marriage isn't perfect. I feed my kids pizza when I should cook vegetables. My kids want to be like everyone else. They want to be invited to your birthday parties. They are even pretty cool. Did I mention they are smart?
Our miracle could be the acceptance of our friends and family. It could be new friends who understand our disease and love us more because of it. New friends who understand when we cancel plans because your runny noses will cause a hospital stay for us. Friends who understand our flu season last 12 months a year.
Our miracle is that we don't always wear our disease on the outside. In a world where people judge how you look, we're lucky that the disease usually effects just the inside. It allows our children to have a piece of normal. If they wore their disease on the outside, our small slice of normal would be gone.
Our miracle could be a new home. All one floor so I don't have to carry our son up the stairs when he's on oxygen.
Our miracle could be a new medicine that is covered by insurance.
Our miracle could be you because in the words of our Hannah, "Everyone has something." Today you have something to offer. It doesn't have to be money or gifts. It can be time, understanding, or just a simple act of kindness. You can always be someone's miracle.
We'll be waiting for our cure. Please keep praying. We could be waiting for you.