Monday, August 29, 2011

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.

Friday, August 26, 2011

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.

Thursday, August 25, 2011

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.

Monday, August 22, 2011

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) & 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

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

Sunday, August 21, 2011

The Beginning

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.