We had already planned to go to Lake of the Woods to spend the day with our church family camping at our church campout. We decided that we would go anyway and get the good news while we were there. I called the office as soon as we got there to ask for the results and was told that our pediatrician would get them and call us. My heart is pounding as I write this because I never could have imagined what I would hear in the next five minutes and how, like a blink, life would not be the same again. Our sweet pediatrician, who I have known and worked with for almost 14 years called and gave me the news that the test for Cystic Fibrosis had been positive. She explained that they had run the test three times to be sure it was correct. She alternated between loving friend and intellectual doctor. She cried and said how sorry she was. I cried briefly, went numb, and a sickening feeling came over me. It was the feeling of death, despair, and hopelessness. It was the feeling of the life I had known and loved was somehow over. It was a loss of innocence. Your Dad saw me soon after I took the call and came over to sit by me. We have never felt more devastated than to hear that our baby girl has a rare genetic disease with scary statistics and potentially horrible health problems. There were so many emotions swirling and yet it felt so surreal that I couldn't process what was going on. The elders one by one and then as a group came over to ask what was going on. They prayed over us and you, Kate. They anointed your head with oil and prayed right then for your healing. We told your brothers and sister after everyone camping had gone away from the beach area. We walked to the beach area together, and the kids all sat on a log. I stood and rocked you, sweet girl, and your Dad sat on the ground. We explained so briefly and in the best way we could what you are facing with your health. Your sister cried almost immediately. She said she didn't want to lose you because she had just met you. Your oldest brother got thoughtful. I searched their faces for signs of understanding in the way that a child can understand such horrible news. I watched your two older brothers play and continue with life as usual. I will always remember how God's creation was on display. The sun was starting to set beautifully golden, the lake was calm with some boats still enjoying a warm summer day, and the light of the sun was shining on the faces of those I love more than any others on this earth. My family. We talked through some of what we were facing, and then went back up to the campsites that our church family was at. Your sister was immediately met with a warm embrace from dear friend, C.D. Such love was felt in those moments! Such reaching out and sincere concern. We were surrounded with love and carefully asked questions.
This is where the story begins. It is not the story I would have written for you. It is not the story of you having Cystic Fibrosis. It is the story of God's faithfulness in your life. His story for you will be for good and for His glory. It is the story of his intimate knowledge of you and love for you, Kate, in a way I can't comprehend. Your Dad and I pressed in hard to the Lord that day and in the four days since then, and we watched with awe as the Lord came to us. He was so present, Kate! He was so kind to us. He spoke to us through so many songs, through so many of his Words, through so many of his people. His people reached out to us minute by minute through Facebook messages, through posts on my wall, through phone calls and texts.
Thursday dawned with a settled sense of fear that life would never be as sweet as it had been in days past. We were in constant prayer, and I drew such encouragement from devotions I poured over about God's mercy, love, faithfulness. He is constant; our circumstances are not! So many verses gave hope and perspective. I had a deeper longing for heaven, and I simply longed for Jesus. Jeremy Camp's song, Give Me Jesus, reminded me to pour out my fears and disappointments and return to my heart's cry: "In the morning, when I rise, give me Jesus. You can have all this world, just give me Jesus." At the heart of this experience is the question: Where is my hope? We all face it at some point in our lives. Someone will hurt us; we will get devastating news about the health of ourselves or our child; someone will die too soon. Then what? For me, this paradigm shift that happened with news of your diagnosis confirmed for me my hope in our Savior. He alone is writing your story, Kate. No doctor can tell us what your life or health will look like. He alone is sovereign over all things and he cares for you, sweet girl. He gave his Son to die for sin and death and death does not have victory! There is such hope and promise for those of us who simply believe that Jesus is the only way, truth and life. Jesus died for you, Kate, and he delights in you. You are a precious miracle of his creation!
We are heading to Portland on Wednesday for our first meeting/appointment/consult with the CF center. We will meet with the Director of Pulmonary Services, the head nurse, a dietitian and a social worker. It is a day I am not looking forward to. Right now I can compartmentalize all of this intellectually, and although the words Cystic Fibrosis keep running through my head, they are seemingly unreal. Having to take you to a center where you will have an appointment, and you will have a chart, and you will be their patient...then you will have this for real. I don't want it to be real, and yet I trust, and rest, and hope, and pray out these fears at the feet of my Father. Oh how he loves us, Kate, oh how he loves us!!!! Your Dad and I will do everything humanly possible for you, and you are surrounded by people who love and adore you. Your brothers and sister will be extra protective of you, and I pray that we all learn humility and compassion and love in a way that we would not have otherwise. I pray, I pray that you will always know how much our Savior loves you. I pray that you will see his healing, that you will never lose hope in Him, and that you will feel and see his faithfulness to you because His faithfulness will be your story.