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It’s Easter Sunday and although it’s been a great day and a wonderful weekend, the thought of tomorrow is looming over me. This past week we found out that my daughter has an intermediate positive* for Cystic Fibrosis. Tomorrow is the day we go to a Cystic Fibrosis Clinic to learn more.
We have been here at our new base for three weeks now and in that three weeks we may have found the answer we’ve been looking for. After 16 months of searching maybe this is it. The “why” for why my daughter failed to thrive, the “why” for the surgery she went through, the “why” for the feeding tube in her stomach and the “why” for the seven hospital stays we’ve endured.
But with this possible answer comes many more problems. Cystic Fibrosis is a genetic disease that is life threatening and life altering. It causes severe damage to the lungs and digestive system and affects the cells that produce mucus, sweat, and digestive juices.
The average life expectancy for a person with Cystic Fibrosis is between the ages of 30 and 40. Some may live longer lives, and some may live much shorter lives. It all depends on the disease, the mutation, and many more things. We’ve also been told that there is 25%-50% that my son is either a carrier of Cystic Fibrosis or that he could also have it too. Because it’s a genetic disease, most likely we will all have to have genetic testing.
We found all this out in the span of a week. One week. Then it was Easter weekend. Holy week. And let me tell you, I wasn’t feeling very holy…
I put my thoughts aside for the weekend so that I could focus on the kids and the fun things we would do, but at the back of my mind was this quote that I had read:
I had never thought of it that way.
Jesus had died. But God still had a plan. The resurrection of His son was the defining moment in the entire story. God was never silent, He was still there waiting and working. His plan was better then anyone could imagine.
So maybe we are just in that waiting period. Maybe it’s Easter Saturday and God is still working. Maybe there is a plan that is better then I could ever imagine. Maybe when God seems silent, His grace is greater. Maybe when God seems silent He’s really not.
* An intermediate positive means that she is borderline. It’s not negative, but the test isn’t in the usual high range either. More testing will be done, but we’ve been told in most cases borderline cases are diagnosed.