Feathers and Towers

My sweet little love,

The days are passing quickly in every way. You seem to have grown since we were at OHSU last Wednesday, and I can only hope at this moment that the pancreatic enzymes are doing beyond what we hope. We had some rough moments on Saturday in particular. You had diarrhea all day, and at one point your Dad was at a wedding, and you threw up another dose of enzymes, and I had a moment of panic. I went and sat on my bedroom floor to have a few moments of quiet to think. I read over the hospital paperwork to find any indication of whether these symptoms were normal and could only find info that applied to older patients. I decided not to call and to just wait out the evening, and by Sunday you seemed to be doing much better. The doctor had told us that it could take a couple days of these 8x a day enzymes before we would notice a difference in how you were digesting your food. Almost immediately we noticed that you were eating less which is a good thing. Prior to getting your prescriptions on Thursday night you were consuming large amounts of milk but not gaining weight equivalent to your intake. Now you are eating less but seem bigger. Other digestive indicators seem to have normalized, also, so we seem to be seeing good results.

Today I was trying to figure out long term insurance plans. It's overwhelming, Kate, to try to plan for your future without being consumed with worry. I know that I know that the Lord is with you, my sweet daughter, and I also know that he has always been faithful to us in every need. It is good to know such a loving Savior.

Kate, Psalm 91 has come up so many times in these last few weeks, and I was struck yesterday at church by the beautiful picture of how God is a strong tower: The name of the Lord is a strong tower; the righteous man runs into it and is safe. Proverbs 18:10. I don't know what you might picture down the road, but I picture a castle made of bricks. It's been standing forever and nothing shakes it. Our God is that tower, and we are running to his beautiful name and we are safe. I have read and re-read Psalm 91 in recent days. This is such a beautiful picture of his protection; strong and secure yet as gentle as a Mama bird with her babies:

¹ Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
² This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.
³ For he will rescue you from every trap
and protect you from deadly disease.
⁴ He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
⁵ Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
⁶ Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.

Psalm 91:1-6

He will cover you and shelter you. We know because of the reality of what you are facing that this does not mean that what is potentially coming will not come, that it will not be hard, and that you will be cured. What it does mean is that he will cover you; he will shelter you. He is always, always, always with you. You are and never will be alone. We do not dread the disease that stalks in darkness because his faithful promises are your armor and protection. For me there is such peace in knowing that no matter what happens, no matter how this story of you continues to unfold, no matter what we face, we are protected. These promises are for all God's people. He is just and right and he is God, and we are not. Please hear me when I say I would never have chosen this for you or for our family. Nope. Never. No way. But do I see God's hand in every bit of this first chapter of your life? Absolutely. I am daily amazed at his faithfulness through the encouragement of others. I can't help but let the tears come. God's plans don't allow for my input. He doesn't want it. He doesn't need it. He just asks that I continue to trust him to lead the way. I have to make that choice every day. You will too, Kate. For now, I will trust him for both of us. I will hold you, love you, kiss your sweet face. I will cry in the dark for the innocence I feel we've lost. I will love and honor your Daddy. I will love and lead your brothers and sister. I will trust. I will trust. And I will know that I am sheltered by the Almighty. There is no safer place, little love.

Made it!

Hello little love,
We made it through your first full day of pancreatic enzymes (8x a day/every day), vitamins (one dose daily) and 1/2 a Vitamin K tablet that you only will be taking M-W-F. Phew. We ended with a bang, though, just a bit ago when you threw up all of the last of eight daily doses of enzymes along with curds of milk. *Sigh. I looked you in the eyes a lot today, my sweet daughter. I told you how much I love you, how I will always take care of you, how thankful I am for you. Nothing about this disease will ever change that. I know things will get hard, but I hope that day is far down the road. There were glimpses of how much work this will take, but we are committed to you and will do anything and everything for you. Oh, and you're in luck, Kate, because you have four siblings who looooovvvvve you so BIG! They will always be a huge support for you, too.

So, as we dealt with logistics, I also prayed scripture over you. We have a chalkboard just outside our kitchen with this verse written large; I had written it on the board even before you were born. The Lord had begun to speak it over me even in those final days before your birth. I knew there would be postpartum fatigue and adjustment, but I mercifully didn't know then how much more there would be. This is the verse I have been speaking over you, Kate. I will never stop, and I pray that His word will sink down deep for you in the days ahead. He loves you, Kate; he made you so carefully and with such love, and for HIS purposes.

Find rest, O my soul,

in God alone,

my hope comes from him,

He alone is my rock and my salvation;

he is my fortress.

I will not be shaken.

Psalm 62: 5-6

Here is more hope, Kate. HE IS OUR REFUGE.

My salvation and my honor depend on God;

he is my mighty rock, my refuge.

Trust in him at all times, O people;

pour out your hearts to him,

for God is our refuge.

Psalm 62:77-8

So many people have commented about your Dad's and my strong faith. It has come up time and time again in these last days. It feels not so much strong, because my flesh feels all over the place. It does feel secure. I know that in the same way I, as your mom, will do everything I can to protect you and love you, my Savior has already done that for me by redeeming me with his death and triumphant resurrection! He loves us more than we can fathom. It's a real, personal love. So I rest knowing that my fears, hurts, hopes, and dreams for you are secure with my Savior. Paul wrote while he was in prison: For this reason I also suffer these things; nevertheless I am not ashamed, for I know whom I have believed [emphasis mine] and am persuaded that He is able to keep what I have committed to Him until that day. 2 Timothy 1:12

We know whom we have believed, Kate, and he is so good.

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.

Let the Winds Blow

We were so privileged to have our friend Tricia take family pictures on the morning of the 4th of July to capture our growing family and my belly brimming with promise. She was preparing to move to Alaska days later and Shane had asked her if she could do pictures of me and the kids, but it didn't seem right to do anything other than family pictures. I'm so thankful for the images she captured. I received this slideshow on a disk today, and Tricia included a lovely note dated August 8, 2011. At one point in the note she says, "You may wonder about my song choice--When I think about your day...the comings and goings of little (and big) feet...in & out the door--coming to you with questions, ouchies, hugs, creatures, flowers, complaints, and tears--I feel the sensation of wind circling you--the Holy Spirit carrying you through your day. The lyrics are perfect for how you have given yourself, your marriage, your family & your life over to the desires of God." After I read her note I popped in the disk and sat back in awe with tears streaming down my face at the beautiful faces of my family. The words of the song spoke to me powerfully. Neither Tricia nor I could have known on that date how meaningful and perfect the song would be today. So no, Tricia, I do not wonder at all about the song choice. God chose it for you. Here are the lyrics to "Fling Wide" by Misty Edwards:

Awake, awake o north wind,
Awake awake o south wind
Blow over me

Come o winds of testing
Come winds of refreshing
Blow over me

Let the winds blow...

Fling wide the door to my soul
Open up the door to my heart
Have your way, have your way
Have your way yeah

I won’t be afraid
I will face the wind
I won’t be afraid
I'll embrace the flame

Let the winds blow...

Take me through the fire
Take me through the rain
Take me through the testing
I’ll do anything
Test me, try me, prove me, refine me
Like the gold, like the gold