To my dearest Kate Elisabeth,
You are one month old today, my precious daughter. One month ago we heard the words we had only heard once before when your sister was born 9 years ago: "It's a girl!" A girl. A dream come true. A prayed for, hoped for wish turned reality. A month has gone so quickly, and our lives are changed forever. A routine PKU screening in the hospital came back with an elevated IRT level which tests for Cystic Fibrosis. On the afternoon of August 5, our pediatrician called with those results and asked us to come in that afternoon for a second PKU. On Monday, August 15 we got another call from our pediatrician indicating the second results were also elevated. You were scheduled to have a sweat chloride test at 9:30am on Wednesday, August 17. A part of me was extremely worried, but the other part of me rested confidently in the knowledge that you are the Lord's child. He made you so intricately inside my womb and knew you in the dark, secret places. You are fearfully and wonderfully made by him, Kate! I was so confident that there was absolutely nothing wrong and that we would praise him for your perfect health after getting the results of the test Wednesday afternoon. Your Dad and I sat in the warm car with you that morning at Rogue Valley Medical Center as you had a sweat coil velcroed to your upper thigh. We waited for your leg to react to the chemical they had put on your leg to produce enough sweat to run the test. Unfortunately, the first test did not give us enough. We started again. That test went much more quickly and we got the sample needed. During this time we sat in the car, listened to music, messaged friends, and prayed together. We trusted our Savior for your perfect health.
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!
I choose to come with childlike faith and say, "Ok, Lord, this is painfully tough. I do not ask 'why us?', 'why Kate?', because why should all this good come to us that you have given us and never any pain? You are with us wherever we go, and so I will trust you." Your Dad and I have had a few chances for conversations, and the overall feeling is thankfulness. We are so thankful for you. We are thankful for His church; His body extending love and mercy to us. We are thankful for a faith unshaken. We are standing firm in an ocean of hope and faithfulness, and that is more than enough for today. I am reminding myself to take every thought captive and leave tomorrow's fears for another day.
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.
Philippians 1:20-21 As it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death. For to me to live is Christ, and to die is gain.
Isaiah 50:7 But the Lord God helps me; therefore I have not been disgraced; therefore I have set my face like a flint, and I know that I shall not be put to shame.
Romans 5:3-5 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
1 Peter 1:6-7 In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith---more precious than gold that perishes though it is tested by fire---may be found to result in praise and glory and honor at the revelation of Jesus Christ.