A New Normal

My dear Kate,

Yesterday was by far the hardest day ever second only to hearing your diagnosis on August 17. I had been anxious, praying, anxious, hoping, anxious, waiting for August 24 to come and go. I could not articulate my thoughts here last night for you because the pain and hurt were deep, and that sickening feeling had returned as we had driven to OHSU/Doernbecher to establish you as a patient at the CF clinic there. Never have I wanted to run so fast and far from somewhere. Never have I felt such a hatred for where my feet were treading.

We had a beautiful, sunny, easy drive to Portland in the morning with Dutch Bros. coffee (courtesy of a dear friend) as we left southern Oregon. I just kept focusing on your face as we drove: your perfectly formed features, your beautiful dark hair, your soft, pink skin. You are perfect! We arrived in Portland with time to get lunch at Whole Foods (yay!) and then headed up the hill. There are delays at the hospital due to construction, and I was feeling anxious that we were cutting our time too close to our appointment time. We didn't quite know the best way to get where we were going, but we arrived, checked in and sat to wait. That was the moment of truth. That was where the pain welled up inside me and threatened to choke me. Our friend Jennifer was with me as Shane went to the restroom, and she asked so lovingly how I was doing. "I don't want to be here..." was all I could articulate as I snuggled you close in the Moby wrap. You were cocooned and protected; sleeping and content. And yet, I could do nothing to prevent us from being there with you. We met with the head nurse, and then the head pulmonologist, and then a dietition, and finally a social worker. As we waited for the doctor to come, I thought I might pass out. I really had the sensation of falling down a dark hole unable to escape this God-plan set before us. "Lord, I don't want this!" And still, you are a GIFT to us. We did not purchase you; we did not choose you. HE chose you for us. HE gave you to us. We praise him for you, my precious daughter! We were given more information than we could want, discussed the science of CF and all that entails; given prescriptions, plans, goals, advice. All of it was so real. Hard. Painful. Rare. Kate, you had a one in 3800th chance of being a beautiful child born with this. Your Dad and I did not know we each carried this harmful, wrong, defective gene. Yet you are given such hope and promise of a long life by being born in this year and at this time. You were born for such a time as this! Do you know how powerful your testimony of God's faithfulness will be? He is with us, Kate, and although it feels dark, he will always be the light for this path you're walking! I am thankful, too, for amazing progress in treatments for CF and the hope that brings.

We met dear friends afterward at a park in Wilsonville for an early dinner and alternated between laughter, catching up, and sadness. It was a bittersweet time for me as the reality of all this just kept settling deeper into my soul. I am so thankful for friends who have known us and loved us for so long; who we don't see often but who love and care and nurture...thank you, dear T family. You were a soothing balm to us!

The drive home was hard, Kate. You ate, burped, and settled in with a cozy blanket given to us the day before we left for Portland. Another friend, S.B., had brought a beautiful hat box with such thoughtfully chosen gifts. A beautiful pink, soft blanket was part of the gift, and she had attached a verse personalized for you, Kate: "He will cover Kate with his feathers. He will shelter Kate with his wings. His faithful promises are Kate's armor and protection." Psalm 91:4 So much love being poured out to us and you, sweet girl! It was getting dark as we left Wilsonville, and darkness was falling over my soul. I was praying; praying for joy, peace, and comfort. I was praying for you and your long term health. There is so much I wish for you. I prayed for healing and mercy, and yet the darkness was invading both the physical and emotional spaces around me. And then, yes then, Kate...I saw HIM. I looked toward the western sky, and I saw HIM closing another day with such glory and splendor. The sky was pink and orange with purple fluffy clouds spread across, and I heard the Lord. "This setting of the sun is my mercy, my child. This is my glory; it all is for my glory! Do you see it; can you see how big I am? You are small and yet I am carrying you. I'm with you." Kate, it was such a beautiful sunset! I realized in that moment again how big our God is. He is living, personal, loving, GOOD. He works all things for good to those that love him (Romans 8:28) ALL THINGS. Hard things. Painful things. He's working, Kate.

As if all that beauty and mercy wasn't enough, we headed farther south into an amazing display of lightning from about Sutherlin all the way to Grants Pass. Wow! We just kept marveling at how the sheets of lightning would light up the whole earth for that fraction of a second.

“Can you raise your voice to the clouds

and cover yourself with a flood of water?

Do you send the lightning bolts on their way?

Do they report to you, ‘Here we are’?

Who endowed the heart with wisdom

or gave understanding to the mind?

Who has the wisdom to count the clouds?

Who can tip over the water jars of the heavens

when the dust becomes hard

and the clods of earth stick together?

Job 38:34-38

We arrived home at midnight, got you ready for bed, and sat on the floor as I pulled papers, vitamin samples, prescription information, notes, more papers out of my bag. I put some things aside immediately, I flipped through some booklets, and I prayed. I cried. I grieved. But what, really, do I have to grieve? I have you, Kate, and we wanted you for so long. I so longed for another daughter. I so longed for Sarah to have a sister. Your brothers and your sister wanted another sibling so much. God granted our requests! Kate, we are privileged to be your family, and we will walk with you down the road for as long as any of us can.

This evening was the beginning of new routines. We are armed with your first two prescriptions. One is pancreatic enzymes to help your pancreas assimilate nutrients. We need to get you growing faster! You were 6 pounds, 9 ounces yesterday so you are truly a little peanut! The goal immediately is to start vitamins formulated specifically for CF patients. Check. Pancreatic enzymes. Check. Vitamin K pills cut in half and crushed, I assume? That's for tomorrow. The vitamins tasted funny and new to you, but they were liquid and in they went. The enzymes? They're little beads, and you're not sure about them. You cough and make faces so far, and I'm sure the texture seems strange. So far it's a Dad-Mom job to get the enzymes in without losing them on the kitchen floor. We're learning lots, Kate :).

My precious girl, this is just the beginning of a new journey for all of us. Your Mama is reading and researching all that I can about nutrition and how best to help you now and down the road. And now, another day is closing. I am so happy to be home with my five beautiful children and your amazing Daddy. There is no better life. So much love, Kate. Can you feel it? It's around you, covering you, carrying you.