In my mind, I have blogged at least 10 times in the past month. But that is most certainly NOT the case. It has been an extraordinary, yet unbelievable journey. One filled with so much joy and at the same time so much sorrow.
Cooper was born on April 26th @ 9:29 pm. Weighing 9 lbs 3 oz. Chris and I were convinced from day 1 Cooper would be a girl. It was so overwhelming not knowing the sex of our baby and waiting for that moment when we found out. He is the most adorable little boy. God had a few surprises in store for us. Holding him in my arms for the first time was incredible. He was absolutely perfect! 2 days later on the feast of St. Gianna (the saint we had been praying for a healthy baby to during Cooper's pregnancy) Cooper was rushed to the NICU for a bowl obstruction. Something that only happens in 10-15% of all infant cystic fibrosis cases. As we weathered the storm of Cooper's illness Chris and I prayed like crazy that this was just a mere coincidence: that we had 2 children with CF but that the bowel obstruction could possibly be just that and nothing more. That day we accepted his diagnosis but were completely confused. How could this be? Why? How can we possibly care for 3 children with CF and a healthy son? There were few words and many questions running through our heads and hearts. The days that followed were spent living a double life. Seeing our other 3 children as often as possible and going back and forth from the hospital to be with our newborn. I have never felt such emptiness leaving our new baby. In the wee hours of the night I woke up to pump and called the NICU to check in on Cooper. I hung up with phone choking back tears. It was so difficult. 7 days and 2 enemas later the bowl obstruction cleared without surgery (praise God). We were, in a word, able to breath again. Surgery would have been very risky and not without future complications. The hope that we held onto that Cooper was a healthy little boy was diminished on the day of his release from the NICU when his blood work confirmed what our head was telling us. He had cystic fibrosis.
As a mom with multiple children with CF it is sometimes a challenge not to see "CF" when I look at my children but to see a regular, tiny precious human being. And that's how I try to treat them. I can't tell you how agonizing it is to see someone for the first time out with Cooper and wait for the dreaded "is he healthy?" question. I hate to hear the "I'm sorry's" because I don't want people to be sorry for us. I want to celebrate this new life from God that we have been extremely blessed to care for. It is a privilege, not a burden. Equally difficult is when people tell you they have been praying for Cooper to be healthy. That's not any easier than the "is he healthy" answer. I feel like we're taking people's faith away. But I know that it is prayer that gets us through each passing day and gives me the strength as a mom to continue to care for them when it gets "hard." If nothing else I have been amazed by the people who have been led to their knees because of our children. It is humbling to know that they are turning to God in a difficult situation. And someday Chris and I will know the purpose of us caring for 3 children with CF but for now while we are on this earth it remains a mystery. Nothing in life is easy, but the best and most important things are worth fighting for. This is our family and this is our normal. I feel so blessed to be given the incredible task of caring for each of them.
And maybe, someday, we'll figure all this out.
