When I first heard that our daughter might have Cystic Fibrosis, I was crushed. I knew in my heart that she did have CF before the amniocentesis confirmed it. I did not know how to feel. I never imagined I would have a child with any chronic health condition. I figured I would have at least one child with glasses and another with my husband’s skin condition, Ichthyosis, but CF never crossed my mind.
Looking back on it, I realize I was going through the 5 stages of grief.
When I was faced with the reality that our daughter might have CF, I didn’t want to believe it. I found myself clinging to the many stories online of other moms whose baby’s echogenic bowels resolved themselves. That was almost every story I found online. So, if that were such a shared experience, that would surely be what happened to us.
Then, I got angry. I was mad at Heavenly Father. Why would He give us this trial while we already had so much on our plate? I was livid with the OBGYN. Why did he keep telling us that the chances were so small? Why would he tell me not to worry when there could be something wrong with my baby? I couldn’t fathom why results were taking so long. I was just angry.
Next, I found myself bargaining with God. I prayed so hard that our daughter would be born healthy. I prayed that she would have something that wasn’t life-threatening. I prayed that it be anything but CF. When I look back, I realize that praying for those things was silly. CF is a terminal illness, but many things are much worse.
During the rest of my pregnancy, I randomly burst into tears a lot. My husband is a saint. He held me many nights as I bawled my eyes out and mumbled incoherently about all of my fears and inadequacies. I cried any time of day. There was no rhyme or reason to the waterworks. My body needed to release all of the overwhelming emotions I was feeling. To be honest, there are still days I cry now, and that is okay.
I knew I would be okay when my prayers changed. I went from praying that my baby would be healthy to praying that my husband and I would know how to care for her whether she was completely healthy or not. That was the turning point for me. I felt so much peace as I continued to pray for guidance on caring for our warrior. I didn’t know how, but I knew everything would be okay. I realized what an honor it is to be trusted with such a special baby. Not only does God trust us to raise one of His children, but He trusts us to parent one of His children that needs extra care.
Through this experience, I have learned that it is natural to grieve when you are told that your baby is not the perfectly healthy child you expected. It is important to mourn the picture you had in your mind. Your life will be different than you expected. I have also learned the changes that our daughter’s diagnosis brought to our lives are blessings. We are blessed to watch our little warrior grow up and change the world around her.