Learned

My dear daughter, Kate,

This has been one of the most challenging, beautiful years of my life, and I know I speak for your Daddy as well.  We have enjoyed 17 years of marital bliss.  He is the best choice I ever made in my life.  I am always in awe of how kind the Lord was in my youth to let me marry a man who would so many years later still love me and our family so well; who would always strive to be the best he could be for us.  I'm so thankful.  That being said, neither of us could have ever imagined a day like August 17th.  We could never have seen this coming, especially with four Cystic Fibrosis-free children born before you.  It has taught us so much.

Kate Elisabeth 5 months old

I've been mulling over all the Lord has taught me or that I have realized since your birth.  This time in our lives will always be so bittersweet for me.  The year 2011 brought the dream realized of another precious daughter, and with the gift of you also brought the then devastating news of your Cystic Fibrosis.  I say "then" because my heart is filled with peace today.  I am running a race here on earth, Kate, as are you, and we are not yet at the finish.  I will continually have to choose to throw off the weight of the unknown parts of your future (which would hinder me) and run with perseverance this race marked out for us. 

¹ Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, ² fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. ³ Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.  Hebrews 12:1-3

In all these thoughts swirling in my head, I have tried to jot them down along the way over the last few weeks.  God has been so good to us.  I will forever proclaim his goodness and faithfulness to us in every moment.  I have never felt more secure in my faith, Kate, and I will never stop telling you of his faithfulness. 

My people, hear my teaching; listen to the words of my mouth. ² I will open my mouth with a parable; I will utter hidden things, things from of old—³ things we have heard and known,
things our ancestors have told us. ⁴ We will not hide them from their descendants; we will tell the next generation the praiseworthy deeds of the LORD,  his power, and the wonders he has done. ⁵ He decreed statutes for Jacob and established the law in Israel, which he commanded our ancestors to teach their children, ⁶ so the next generation would know them,  even the children yet to be born, and they in turn would tell their children. ⁷ Then they would put their trust in God and would not forget his deeds but would keep his commands.   Psalm 78:1-7

What your Mama has learned in recent months:

1.  Life is a surprise; the kind of party that caught her off guard when she least expected it.

2.  People are amazing.  They have loved us in better ways than we could possibly imagine when we felt the bottom fall out of our lives.

3.  God's faithfulness surprises her; day in, day out.

4.  Joy IS found in suffering.

5.  She can rise to the challenge when the Lord allows pain in her life that changes it forever.  It is not of her own doing!  It is the realization that her dependence on Christ is where she is fully satisfied, not crippled.

6.  Everyone's life is a beautiful gift.  We lie to ourselves and go against what God says when we think that a child isn't a blessing because of the parent's ages, circumstances or financial ability or if the child is not perfect and could have been terminated given the right prenatal tests.  God alone opens and closes the womb (Hannah, anyone?) and we prove ourselves ignorant and humanistic when we decide whose life is worthy of our celebration.

7.  Jesus is the gift; he is the treasure.  Give me Jesus!  This world is temporary and worth holding onto very lightly.  Eternity with my Savior is what I long for.  The coolest jeans or hair?  That's fun, but so here-and-now.  The treasure?  It's worth my time and my heart.  All mysteries will be revealed, the eternal death of sin, no tears, no pit-in-your-stomach pain.  Bliss with the Author of all joy:  YES.

8.  Life changes.  People who were fixtures in her life will sometimes go, and the Lord will bring people into her life to love, teach, pray for, encourage, and refine as an extension of Himself.

9.  Life submitted to Christ is sanctifying and beautiful, not boring and restrictive.

10.  My most precious Kate Elisabeth, your life and circumstances have taught me more than I've learned at any other point in my life about what is true, what is important, and what is eternal.  I will be thankful forever for that.

I can't wait for you to start a list of what you've learned and what you're learning.  It will be a precious list of his faithfulness to you and your joy in him.  Merry first Christmas to you, Kate.  You are so loved and well loved. 

Delta F508

Dear sweet Kate,

You had a four month check up with our local pediatrician on Tuesday and she had the results of your genetic testing.  Your Dad and I gave you one copy each of the same mutated gene so your mutation is double Delta F508.  Your brothers and sister each got two healthy copies. Each of them, unbeknownst to us at the time, had a 1 in 4 chance of having CF for the same reasons you do.  It's so complicated to explain so I'd encourage anyone reading this to Google it for yourself and sift through the information.  For you, Kate, it simply means we know what type you have so that as treatments progress we'll know what you will be eligible for.  It's funny that I had so much peace and saw the words immediately amidst a slew of information on the test results.  God continues to cover me with so.much.peace. about you.  It could be that you are doing SO WELL that I still live in a state of denial.  You have had no respiratory issues at all so far, and we have been compliant with your treatments.  You weighed 13# 1.9oz on Tuesday, and I'm just thrilled.  You are thriving, cooing, rolling over, laughing, and being just generally perfect.  You bring us all so much joy! 

As we head into the Christmas season I think of what Mary might have felt as she anticipated Jesus' birth.  I shared at church on November 20th that a year prior I had been so discouraged and was not sure we would be able to have another child.  It wasn't happening in my timing, for sure.  That evening I had taken an early pregnancy test, and there was the first sign that you were with us!  I was shocked and so happy.  I had no idea how much our lives would change within a year.  I can only imagine how Mary felt carrying the long awaited Messiah.  She had no idea how life would change for her after his birth. I can relate to those feelings.  The birth of any child is life-changing, but your birth and subsequent four months have brought the greatest truths, joys, sorrows and lessons to the forefront of our lives. 

I was so grateful to be able to pray with thankfulness for you and your brothers and sister at Thanksgiving.  You have brought so much delight with your sweet smiles and how people have loved us through the hard days.  I stand in awe of the Lord's goodness.  I am excited about this Christmas season and am so thankful for the promises God had made to send a Savior that were fulfilled in a humble stable so long ago.  The world changed forever in the moment of Jesus' birth, and my world is forever changed by yours, dear Kate.

Genetic Testing

I took you in to have your blood drawn today to be tested for the specific two mutations that caused your Cystic Fibrosis.  We were told by the doctor yesterday that they almost always find both mutations but not always.  Because your Dad and I both carried a healthy gene and a mutated gene and because you got both bad genes, you have two mutations.  They may be the same or could be two different ones. We will find out in about a month which type you have.  At this point it doesn't really matter. But, there are some promising drugs on the horizon for some small percentages of people with CF that look to treat the cause of CF instead of the symptoms.  Up until this point the progress of science research has been able to identify triggers and problems related to this disease and take a proactive stance against lung damage and digestive issues.  For you this means twice daily Albuterol treatments and digestive enzymes every time you eat.  You have had no respiratory issues at all yet so the Albuterol is just on board for the "if and when."  The enzymes are clearly needed, and your dose was increased slightly yesterday because of your increase in weight (yay!) and stooling patterns.  It was clear to me in the last 10 days that something needed to be adjusted.  All the while you smile, coo and talk.  You are so full of peace and joy! 

I am anxious to know which CF group to put you in, figuratively.  We know that 70% of people with CF have the Delta F508 mutation as their primary mutation so we are expecting that as at least one of the them.  Here's a basic rundown of the majority of people with CF:

http://en.wikipedia.org/wiki/%CE%94F508

At this point, there is no fear involved.  The denial of this disease in our lives has passed.  It has settled in for the long haul.  Today is the only thing I can manage so I'll let God take care of the rest.  I'm so happy I don't know the whole story, but he does.  We're just so very thankful for you, sweet Kate.

Oh his goodness!

Sweet baby,

Today was a good day.  I feel so much peace in my soul tonight, and I'm thankful.  We went to OHSU today, and I had prepared myself for whatever might come our way.  I wasn't sure of a few things, knew of a few, and waited for anything.  Instead, your weight is amazing, and your weight to length ratio is now at the 65th percentile!!!  You were 12#6.8 ounces today.  Those sweet rolls on your thighs, at your wrists, the dimples in your fingers just make me ooze sappiness.  You make me so happy, Kate!  You talked, talked, talked to everything in the room while we waited and then you had quite a conversation with the medical assistant.  She thought you were pretty amazing, too.  :)  Because you are doing so well we get to skip our December appointment and don't have to go back until the end of January!  Yippee!  The doctor did another airway culture to see if the bacteria pseudomonas is present in your airway.  He said he would be surprised if it was present because it is usually eradicated in your age group.  I am hopeful, but if it's there we will start TOBI again.  Even that just doesn't scare me.  Victory!

I so enjoyed this trip.  Coffee on the way out of town, four hours of being with your Dad in the car (always my favorite!), Trader Joe's, a great, quick appointment for you and another four hours driving home visiting with your Dad.  The rest of the monkeys met us at the door when we got home, and we went from blissful quiet in the car with you talking and us listening to Mark Driscoll to the busyness that is our very real life.  It's a happy life, Kate, even with health issues, broken arms and broken legs. We are so fun, right?  Thanks, Lord, that any good in my life is because of your goodness and grace.  I'm so thankful to call you my Savior because when it rains I will praise you, and when life just feels peaceful I'm so happy to say that it's not to me, but to your name be the glory.  Thank you for your kindness today, Jesus. 

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.  Romans 15:13

Big Girl Panties

Sweet baby,

As irony would have it, you are still in diapers for a couple more years, but I want to share a bit of wisdom with you for down the road.  Here it is: when life is hard, when it feels all roller-coastery or like the Tower of Terror (which you will never hear I have been on because I will never go on it...) you will have to put on your big girl panties and be bigger than you want to be.  You may have to be nicer than you want, more brave than you want, more gracious than you want to be, but you'll have to do it.  You'll have to tell yourself, "Self, life is hard.  A lot.  Continuously at times.  But gosh darn it, get on with it!"  During one day my life can feel joyful, happy, peaceful, and then with one bit of life it can get all cattywampus in my head.  Yes, I choose to laugh, pray, drink coffee, etc. but there is often a battle raging within me to be a big girl when I'd really rather go to bed, cry, still drink coffee and say curse words in my head to the people who bug me.  I digress.  Life is sticky, Kate.  The good stuff sticks and so does the bad, but you have to learn what to keep and what to wash off.  Keep these things:

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.  Philippians 4:8

Whether it's Cystic Fibrosis that bugs you, or maybe people or just rotten circumstances, I will be there to cheer you on and encourage you.  I pray that the Lord will give you friends that I've had in the past and that God is putting in my life now who encourage and pray and love.  They're the ones who will be there for you no matter what.  And when that day comes when it all feels hard, they'll tell you to put on your big girl panties, and you will, and you'll get on with it. 



Laughing

Well, these last two weeks have been comical (??) and we're going to stick with that perspective!  On Thursday afternoon, October 20, your brother Ben broke his arm while playing on an extra mattress with your brothers.  It's one of those moments that I knew was coming.  Doesn't every mother want to be the fun mom?  I do.  It's just a mattress; they just want to play and have fun.  It's unfortunate that I had been telling them all day that I.DO.NOT.WANT.TO.GO.TO.THE.HOSPITAL.TODAY.  I'm pretty sure I talked in all caps each time I said it.  I even walked out of the room after warning them yet again to be careful and said out loud to myself:  "famous last words."  Yep.  I sealed the deal right there.  Must have been less than two hours later I was having a complete hysterical melt down as I saw Ben's arm and screamed at everyone to get in the car because his.arm.is.BROKEN.  It's not a moment where I passed any kind of spiritual test or became a nominee for mother-of-the-year.  Nope.  Lost every marble in that moment of seeing Ben's deformed arm.  I couldn't get ahold of your Dad.  I was feeling frantic. 

We drove like mad people down our road.  I say this as if anyone was driving but me.  We went to the Peds office.  One look at the arm and we were sent to Radiology with xray orders.  Ben handled the xrays like a champ and we were back at the Peds office with confirmation that not one but both of his forearm bones were broken.  Awwww.  Good times.  We were told to go to the ER where one of the Ortho staff was already fixing someone else and we would be seen by them.  Ben would be sedated, arm would be reset and casted.  At this point friends had swooped in to pick up children, and we had even run into friends *by chance* in the Peds parking lot.  They hugged and prayed for us right then and there.  The Lord's providence just astounds me at every turn.  Off we went to the ER where Ben amazed me with his complete calm demeanor through every part.  Thanking Apple for the ability for Ben to watch Dora or Diego on Daddy's phone.  It saved the day and provided the perfect distraction while we were waiting.  All the staff was assembled, everything was explained, sedation was gone over, and then we began.  Ben looked at Shane while Shane held his face from seeing the IV go in.  Ben watched Shane, got big crocodile tears at one point but never let out a sound.  I'm in awe of this boy.  The sedation took effect, I was sent out of the room with you while they used a mobile xray machine as they reset the angulated radius (the ulna was also broken) and then began casting.  It all happened so fast, and then Ben was left to come out of sedation.  He was looped out of his mind and so funny to watch.  He went off for another xray with the cast on, all looked good, we waited for another 1/2 hour to 45 minutes for the sedation to wear off completely and home we went to pick up children from various friends' houses.  He has done so well and the cast has not stopped him from doing everything he always does.

Fast forward eight days.  Sarah was at a birthday party at a rollerskating rink.  I was having my hair done in a blissful two hours of quiet and adult conversation.  I got a call from Shane just as I was paying and getting ready to leave.  "Sarah fell and thinks she broke her leg."  I just started laughing. "Really?"  That was about all I could get out.  The battle in my mind was between "no way" and "well, everything else keeps turning out differently than I thought, so..."  Off we went to the Peds office again and ended up following Shane into the Peds parking lot.  Sarah was in the back of a van that belongs to the grandma of the boy whose party the kids were at with Shane holding her leg up and trying to console her.  Not to be that night.  Our favorite pediatrician came out to see her in the van, gave us xray orders and we headed back over to the hospital.  Deja vu?  Yep.  Of the most surreal kind.  Our pediatrician told me to call the back line as soon as Sarah's xray was done.  As soon as I called I got the "well..."  I'm really not a fan of conversations that start that way... "...she has a nasty spiral fracture of her tibia."  "Really?"  That was about all I could get out again.  In the meantime, Sarah was in extreme pain and Shane had to keep her leg elevated at all times.  He now has a hunchback...I digress.  We ended up back at the Peds office where our pediatrician splinted her leg (Friday) and told us she had to be seen at Ortho on Monday for a cast.  It couldn't be casted right away due to swelling that is normal for this type of fracture.  Shane went to the nearest pharmacy to pick up pain medication, Ryan and I assisted Dr. S. with splinting Sarah's leg while you laid on a blanket on the ground. 

We somehow made it home through lots of tears and agony on Sarah's part while she was as flat as possible in the backseat with pillows propping her leg up.  That night was so long.  None of us got to bed until midnight and then we were up every 1/2 hour to an hour trying to help Sarah.  The narcotic for her pain wasn't working at all.  We ended up getting a different medication on Saturday and started augmenting with Motrin and at least her pain was mostly tolerable by Saturday afternoon.  Word got around and friends started bringing meals, presents for Sarah, and as always, lots of love.  We got Sarah into a long leg purple cast Monday afternoon at the Ortho office, and each minute is an improvement.  We still haven't had a decent night's sleep due to pain and needing to change positions, but her pain is under control at least.  Really, that's about all that's under control!  I have laughed in my mind so much at how out of control life feels right now, and yet I have so.much.peace.  How is that possible?  I know because I am known.  The Lord continues to stretch us, and it has not felt good, but now we are laughing at the absurdness of thinking we ever have any control over anything anyway! 

So, we now have two kids in casts along with trying to continue with homeschooling and daily treatments for you, Kate, and life in general.  Lord, let us keep laughing.  We will keep trusting you.  You have never failed us!  No more, Lord, thank you!  Plate's full for now.

Beauty From Ashes

Sweet Kate,

Your Daddy texted me Monday afternoon saying he was going to try to take Tuesday afternoon off so we could run up to Crater Lake for the afternoon.  The weather was beautiful here Tuesday and we surprised all of you by Daddy arriving home right after lunch, us directing everyone to grab shoes, pants and a sweatshirt, then we loaded the car with snacks and off we went.   It wasn't until about 15 minutes before we got to Crater Lake that your big brother finally guessed where we were going.  We're nothing if not always surprising the kids with various outings :).  So fun.  Well, as your Dad predicted, the weather was so, so beautiful!  It was clear, sunny, warm, and there were only a handful of people at Rim Village.  Perfect!  We spent a few hours surveying the scene that is Crater Lake.  We read signs, watched videos, took pictures, ran around, climbed rocks, and enjoyed each other's company.  It wasn't until we got home that night and the house was quiet that the Lord reminded me of how much beauty comes from ashes.  We got to see it at Crater Lake.  It was such a perfect reminder of what exquisite beauty can come from complete destruction.  I'm sure if we had been able to view the scene after the series of volcanic eruptions thousands of years ago it would have looked hopeless.  Destruction, fire, ash and mess everywhere.  But just as a forest rejuvenates over time after a fire, Crater Lake was born in beauty from fire and ashes.

Kate, the Lord has given you what many would call "ashes."  You have a disease scary and unpredictable.  And yet, my dear daughter, your life is BEAUTY.  Your life has brought so.much.joy and so many people have poured into our lives encouragement, prayers, and love of every kind because of what the Lord has allowed for you.  That is beauty of the most real kind.  That love is genuine and so beautiful.  It is the kind that sacrifices, gives, and works for the good of another.  We have been the recipient of more beauty than we could imagine.  It is breathtaking in the images of so many dear people who play like a reminder through my head of Christ's love for us.  I have printed email after email of encouragement that has come to us since August 17.  I want you to see the beauty.  I have saved every card, every encouraging note, every verse sent to us.  I want you to see the beauty from what the world would call ashes.  Kate, as you get older there is so much I will share with you about what real beauty is.  It is not self-absorbed.  It is not consumed with self.  It is not sitting back while others give.  Love gives.  Love serves.  Love encourages.  Love sacrifices.  A sweet friend made a schedule for us of your daily routine, and at the bottom is John 15:13:

Greater love has no one than this, that someone lay down his life for his friends.

That, my dear, is beauty.  We have experienced that beauty! That is made more beautiful when circumstances look like ashes.  All of us experience ash in our lives.  Life can be painful, finances can be tight, relationships can be broken, people hurt us.  But the Lord wants to exchange our ashes for beauty, a garment of praise for our spirit of heaviness.

To provide for them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the LORD, that he might be glorified.  Isaiah 61:3

God is always working for our good but supremely for his glory.  If we allow ourselves to wallow in the ashes, the beauty will be so much more difficult to reveal.  However, if we submit to his plan, as painful as it seems, he is making it beautiful.  If you ever need a reminder of exchanging beauty for ashes we'll take a drive up to that beautiful lake that emerged from destruction.  I can only imagine how beautiful your life will continue to be, Kate Elisabeth.  Through the pain, through the inconvenience, through any earthly discomfort HE IS WITH YOU.  He already laid down his life for us, his friends, and there is no greater love than that.  He has taken our ashes already.  He has given us the oil of joy.  He has given us the garment of praise.  Why?  That we might be rooted in the Lord so he can be glorified.  Let it always be said of us that we have laid down our pain and instead focused on making deep roots in Christ!  I love you, my beautiful daughter.

Recognition

Little love,
I stare into your beautiful blue eyes all through the day, and I memorize your dainty features each moment.  You are always close to me or in the arms of a sibling who loves you so much.  It's a precious gift to have you here.  It's so nice to see the perfection in how you were created.  God was so kind to give you to us.  Your little life has brought so much to our family!  With CF looming closely in nearly every thought I have, it can get a little busy in our house and in my mind.  There are vitamins to take, vitamins to crush, Albuterol treatments morning and night through an inhaler and chamber, TOBI for an hour in the morning and an hour at night, enzymes at every feeding by mouth...it can get exhausting.  The gift, though, is that it's YOU.  I see you, Kate, I recognize the beautiful gift you are, and I am incredibly thankful.  It doesn't make things easier, necessarily, but you make it worthwhile. 

Doesn't God see us like that?  We are sinful, prideful creatures bent on doing things our own way in our own time.  We want ease and tranquility.  We are time-consuming people whose wills need pruning and shaping at all times.  But, Kate, HE sees us!  He knows every detail of us.  He sees our sin.  He sees the good in us.  He sees Himself in us because we are made in His image. He recognizes us as His children.  There's so much comfort in that!  Even if no one else sees the sacrifices we make for each other, for our children, for families and friends, He recognizes it.  Here is His promise to us:

Trust in the Lord, and do good;

dwell in the land and befriend faithfulness.

Delight yourself in the Lord, and he will give you the desires of your heart.

Commit your way to the Lord;

trust in him, and he will act.  He will bring forth your righteousness as the light,

and your justice as the noonday.

Be still before the Lord and wait patiently for him...

Psalm 37:3-7

Lord, I commit my way to you.  I trust you, Lord!  Thank you for my precious daughter and all she is teaching us; all you're allowing for her to teach us.  Kate, we had an appointment with the CF docs who come from Portland on Friday.  I was so thankful to not have to drive north this month.  You were 10 pounds 12 ounces!  Yay!!  The doctor was so happy with your continued good growth, and I see it in your legs getting rolls, in your chubby belly and cute double chin.  We praise the Lord for his sovereignty over all things concerning you!



Bless

My dear daughter,

This past week was a flurry of activity including school, science class, a fun surprise to see Stomp for your big brother's 11th birthday, a fun, busy day on his actual birthday with friends and family, visits with friends, and plain old life in between. In the last week and a half all your brothers and sister have been tested for Cystic Fibrosis and all their results were negative!  It wasn't a surprise, but assuming they didn't have it was not something I could do given your circumstances. The remote possibility of CF lurking in their bodies caused me to wonder and worry. I do not take it for granted that they are free from this disease!

We had our first service at our new church plant here in town last Sunday.  It was wonderful to drive five minutes to church instead of forty!   Our good friends led worship and taught us a new song (to us) by Matt Redman called 10000 Reasons.  It resonated with me that day, and I found it online so I could learn it and listen to it this past week.  The words hit close to home as I have struggled with many emotions lately.  The lyrics:

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore


My Kate, you are such a beautiful picture of God's complete love for us.  You are perfect.  You are an undeserved gift. You teach me so much everyday about patience, contentment, and persevering in all circumstances. Who knew a sweet baby could do that?  Kate, "...whatever may pass, and whatever lies before me let me be singing when the evening comes..."  Yes, yes, yes!  Let me be singing when the evening comes!  It has been the cry coming from my heart this past week. I am failing every day to show that I'm still "singing," but the desire is there.  Whatever has come before and whatever comes tomorrow, Lord help me still sing to you, help me to worship your holy name, help me to bless you, Lord!  Kate, life hurts.  A lot sometimes.  It hurts so much right now.  Not because of you, my sweet girl!  You and your siblings and your most amazing Daddy are so much joy to me.  Our little home, our little life, our little conversations, our big love for each other carry me through each day.  Sometimes things one is most certain of in life get stripped away, and sometimes it is just painful to the core of one's heart.

Lord, fill me to overflowing with your love so I can show your love to everyone I come in contact with because of my great joy in my circumstances OR despite my circumstances!  "Bless the Lord, O my soul!"  It's a command. It demands response. When there is hurt of any kind in our lives it doesn't come naturally to us to worship.  It doesn't always come easily to bless the Lord or anyone else.  I want to guard.  I want to shut off the part of my heart that just hurts so much right now.  There's a dichotomy between the rest of my life that is full of joy and normal frustrations and the other part that is deeply wounded.  Again, like everything else (!!!!) I have to make a choice. I have been failing to truly surrender this hurt and instead have let it fester.  I let myself get affected by anything I hear regarding the situation and then my stomach is weighted and sick again.  My thoughts wander unproductively. But, my dear Kate, such is life.  Whether it's finances, relationships, or marriages, sometimes we just have to acknowledge the hurt before the Lord and say to ourselves and to our souls that we will bless the Lord!  Why?  "For all your goodness, I will keep on singing, ten thousand reasons for my heart to find!"

Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

And now, it is evening.  It is quiet.  The day has passed. You are sleeping peacefully on my chest with your sweet angel breath ebbing and flowing from the very lungs that are harboring a nasty bacteria.  I pray every time I give you the TOBI medication through your nebulizer (two times a day for almost an hour each time) that you will be healed of this Pseudomonas aeruginosa, and that you will always know your security and healing is in the One who made you.  Do you know how loved you are, sweet Kate Elisabeth?  You have no idea. So many people are praying for you, asking about you, checking in with us to see how you're doing! And, my amazing, loving Savior sings the same song over all of us of his great love!

The LORD your God in your midst,

The Mighty One, will save;

He will rejoice over you with gladness,

He will quiet you with His love,

He will rejoice over you with singing.

Zephaniah 3:17 NKJV

I encourage you, sweet daughter, to always worship his holy name, to see his goodness, to acknowledge his great name, and when the evening of your day or your life is upon you, that you will still be singing "...bless the Lord, O my soul, worship his holy name!"  Even when life hurts, Kate, as I know it will for you, I believe God will pour out the biggest blessings and his truth to you when you bless him with your faithfulness!  I love you, my precious girl. 

Grace

Sweet Kate Elisabeth,

More new things have become part of our routine since last Friday.  When we got the news about your pseudomonas infection we were told it would take a few days to get everything lined up in order to start the TOBI treatment and Cipro.  On Friday we received the nebulizer from the local DME company.  Ouch. I told the man (that your Dad worked with years ago when he worked for the same DME company!) that I had never dreamed I'd see him in my house. Earlier that morning, I walked away from the pharmacy with a *grocery sack* full of your prescriptions after crying in front of the pharmacist because the overwhelmingness of everything new again spilled over.  More ouch. 

On Saturday evening I noticed that you were covered in hives from the oral Cipro we'd started.  I immediately placed a call to OHSU, spoke with the dispatcher and the only doctor that has seen you so far *happened* to be on call. GRACE   He said to discontinue the Cipro, that it was unfortunate that you couldn't take it but that the TOBI was the more important of the two medications to fight this bacteria. We were away from home when I noticed the hives and spoke with the doctor, and I reconciled stopping the Cipro with knowing that when we returned home that night a piece we were waiting on for the nebulizer in order to start the TOBI would be on our doorstep via UPS.  However, when we got home it wasn't there.  It would mean waiting until Monday to start.  WAITING.

Monday morning arrived, the hives were mostly cleared up, you did not seem to have any other adverse reactions, and we waited for the last piece.  WAITING.  It arrived.  I went to check the mail and OHSU had sent a package with other nebulizer parts in it.  Left completely confused I called and was told they were just extra parts in case we needed them.  It turns out they were the right ones we needed (due to sizing) and the part we had been waiting so anxiously for from UPS was not.  I was left standing at our counter with nebulizer parts all about wondering where to start and what to use.  Breathe.  Pray.  Lord, help.  Overwhelming.  But, like everything else so far, what seems impossible and scary initially is covered in peace so quickly. GRACE  

The first TOBI treatment was awkward.  How to sit?  How to position you?  How to give you the treatment, hold the mask, talk over the top of the whirring nebulizer, calm you as you fight the mask, and try not to breathe it all in myself...*sigh.  There was chaos all around me with the little boys just arriving home from Grandma's and other activity happening with her arrival.  In the midst, your grandma came to stand next to me as I was sitting on the ground in front of your swing and gently put her hand on my head.  Such gentleness.  It's often the knowing hug, the encouraging word, the gentle touch that speaks so much GRACE in those blind moments; the moments of everything new and foreign and scary.  In true Kate fashion, you slept through most of the treatment with only a bit of a struggle at the beginning and end of the 30 minute treatment.  Phew.  We have now made it through four treatments. By noon today, life had righted itself in many ways.  There had been emotional turmoil coming from multiple directions, and so much was resolved today. GRACE 

My dear Aunt and Grandma came to visit today, loved on you, asked questions and enjoyed your sweet presence.  What a gift you are every day, little love.  You are teaching me so much.  You are giving me such a different perspective about life, people, love, and time.  So, what is this grace that I keep referring to, sweet girl?  It is God's unmerited favor.  It is kindness from God we don't deserve.  I could say we don't deserve Cystic Fibrosis.  It's just not fair, right?  I could say you don't deserve to have so many medications going in your body each day, and you're not even sick!  Not fair, right?  Or, I can see how much kindness we don't deserve!  God, help me to always see where grace is being given and when I need to give it. There has been so much unmerited favor shown to us through strangers and friends alike during these days.  I am so thankful, Kate, that your life is a conduit of so much goodness and kindness.  I love you, my perfect baby girl!

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  2 Corinthians 12:9

For all have sinned and fall short of the glory of God, and are justified by his grace as a gift, through the redemption that is in Christ Jesus...  Romans 3:23-24

Reality

My precious little love,

Oh, days like these are hard and sobering.  Just when I feel that I've assimilated new information, new prescriptions, new routines, we get just a little more "stuff" than we hoped.  You had a routine throat swab when we were at OHSU 10 days ago to check for bacteria.  Standard CF stuff.  You colonize bacteria in your lungs so the docs always check to see which one we're dealing with.  This was your first one.  We were told that there are a lot of different bacteria out there that CF patients harbor but that there were two that would be very rare for you to have at your age and they would require treatment.  The results came today by phone call, and you have one of the two rare ones:  pseudomonas.  Doesn't it just sound mean?  Unfortunately, it requires lengthy times of medications to try to eradicate it (temporarily at least.)  We will be starting a one month 2x a day TOBI medication through a nebulizer and another 2 week medication orally.  It all has to be arranged through pharmacies, insurance companies and durable medical equipment companies.  This stuff isn't cheap.  BAM!  Reality check.

I got off the phone and did what I've had to do each time something changes; each time we hear new news.  Breathe.  Pray.  Breathe.  Self-talk.  Lots of self-talk.  LORD!!!!  Come to our rescue...  I went to the back door and watched the kids playing.  I talked to myself and prayed and decided to do what I've done so far...rest and trust.  It was hard today.  I know it will get more difficult to walk the talk.  Person after person has spoken of how encouraged they have been by this blog; how the Lord has spoken to them through these words.  I have to admit, I have read some of these posts and wonder who wrote them.  Is that me?  Will I endure this trial and still shout the Lord's goodness?  Here it is:  I can't do anything else.  Yes, these days scare me.  Yes, that sickening feeling reverberates through my body.  Yes, it crushes the heart of this Mama to hear bad news about you, my amazing daughter.  It can't be true.  You are perfect.  You smile.  You coo. You stare so intently in my eyes.  And yet, it's real.  These days are proof of that.

So, we carry on.  I called my family.  I let them love me and cry with me.  I straightened up a bit in anticipation of friends arriving.  The Lord knew this information would arrive to my ears today.  He showed me so much love through a friend who has kindly pursued me in prayer and kindness.  She brought us breakfast and my favorite coffee and visited the morning away.  A half hour after she left another friend texted that she was bringing lunch to us.  She arrived with a smile and I got the phone call while she was here.  This is the same friend who was at my side when we received the news of your diagnosis initially.  None of these friends knew that today would be a hard day.  I didn't either.  But they loved, and gave, and were just here.  Present.  Lovely.  Kind.  More friends arrived in the afternoon to visit and the mother of a dear friend showed up with cookies and cupcakes.  All just because.   Lord, your faithfulness shown through friends has carried me through these days.  Today was no exception.

Let this always be true of me:

Let me give glory to you, O God, my King; and blessing to your name for ever and ever. Psalm 145:1

Perspective

Everything can change depending on where we're viewing it from, right?  My dear girl, you are still gaining distance vision in these early months, and your perspective is almost always from someone's arms.  You are dearly loved, little one.  One month ago today we received the news that you have Cystic Fibrosis.  It was the most devastating day of my life.  The reality of that day has continued to come in waves; like the sea that never stops but almost always lands on the shore and then recedes only to return again and again.  I love the ocean, Kate.  You'll always know that and how it calms me, makes me rejoice in God's beautiful hand over all creation, how the sound just soothes the core of my soul.  The ocean is a beautiful gift from a glorious giver, and I worship the giver, not the gift.  I am thankful in my bones for how big God is and what he has made.

My toes in the sand in my favorite ocean at my favorite beach
Tunnels Beach, Kauai 2010

The reality of your diagnosis has returned to me over and over through our days since then as we've adjusted to new medications, budget reformations, trying to remember all that needs to be done for you each day and continuing with life in general.  Sometimes the long term possibilities with your health chill me.  Sometimes I am in denial.  Sometimes I forget that we even heard that news on August 17.  I look into your beautiful blue eyes and am continually in awe that you are here;  I rejoice that you are my daughter.  Depending on the day, my perspective can wax and wane from the here and now to the long term and unknown.  At the core is my Savior.  He set this before us, he allowed this for us, and my cup overflows with blessings.  I am generally not a glass-half-full kind of girl.  I'd like to be, but I can be pessimistic and untrusting of others.  I am happy to pour out encouragement and love but question why others would want to love me in that way.  I have been drowning in love in the last weeks.  It is such a sweet place to be.  You, my little love, have brought such joy and HIM into my life in a way I've never experienced.   My joy is not because you have Cystic Fibrosis; it is despite your diagnosis that my joy has been made full!

The day after we heard your diagnosis a friend texted me and asked how I was doing. I was only trying to keep breathing.  I think I said that I was afraid that life would never be as sweet again.  I knew in that life changing moment the day before that my innocence had been taken.  And yet, in these weeks, I have experienced a sweetness I never have before.  If I did not know that your life rests sovereignly in His hands, Kate, would I have that perspective?  If I did not believe that my help comes from the Lord, would I appreciate and see how He has chosen to pour out his love over our family through so, so, so many people? It boggles one's mind at the goodness.  The love just keeps coming, Kate, and I can only keep seeing life as being completely full of HIM, because it is.  He is everywhere!  He is in every kind word spoken in our direction, in every hug, in every prayer, in each tear shed by others for us, in every tangible card and gift, toilets cleaned and floors swept, coffees delivered and groceries bought.  I see the Lord everywhere, Kate, because I choose to and because he is letting me wade in His glorious goodness.  If I didn't believe, would I see Him?  He'd still be there, but I would be missing so much.  This unchosen plan would still be before us, but there would be despair, depression and hopelessness.  Instead, all we have to do is keep walking with Him and He will continue teaching us and showing us who He is; who He's always been.  I AM.  We will keep following Him because it's the only sure thing,  and the view is too good from here.

Held

My sweet Kate,

We headed north this morning for another visit at Doernbecher's CF clinic.  Your sister came with us and sat in the front (big special treat) with Dad while I sat next to you in the back.  This trip was not so daunting, but there is a heaviness within me from some external circumstances that clouded everything about today.  Trying to separate all the fragments within my head left me feeling physically sick.  Sweet Kate, I only write any of what I write to show you my weaknesses, my hurts, my extreme joy that you are my daughter and my hope in my Savior who is my treasure.

We listened to music much of the trip there, and Natalie Grant's Held came on P*andora at one point.  I feel that the Lord continues to speak to me so much about his very real presence with us.  His faithfulness. We are being held in this day and through it.  A few of the lyrics...

This is what it means to be held...
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior... 
 (emphasis mine)

1 Peter 5:10 says, "And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you."  Kate, we all shy away from suffering.  It's really a bad word in most circles.  We want to avoid pain at all cost.  But look at what he promises us:  restoration, confirmation, strength and establishment.  He's called us to himself, and I want to be found faithful.  I hope to only ever point you to the one who is writing your story.

There were so many things that were better this time around in Portland.  One, we knew a few restaurants close by so we chose one near OHSU instead of driving downtown.  Two, we allowed extra time and arrived at OHSU with plenty of time to spare.  Three, we located the Doernbecher parking lot instead of trekking across the sky bridge and walking a. long. way.  Four, and this is the great news, we saw that your weight continues to climb quickly!  Never have I been so excited about numbers climbing on a scale than watching you grow at an above average pace now!  I had taken you in last Wednesday to our local pediatrician's office and you weighed 7 pounds 14 ounces.  Today you weighed 8 pounds 6.6 ounces just five days later.  You were at the 3rd percentile for growth last Wednesday and today you are at the 10th percentile!  Yippee!!  Kate, we prayed for your growth.  People asked how they could pray and we asked that they pray for quick, steady growth.  Thank you for answering our prayers, Lord!!  Your overall average weight gain since your first visit at OHSU is 44 grams a day.   The average for babies your age is 30 grams a day.  Above average, my sweet girl!  The doctor was pleased, and the dietitian told us that already your weight to length ratio is above the range needed to keep you in the "safe" zone for long term good prognosis.  The better you grow, the more likely you are to do well long term.

Our appointment was supposed to take about an hour today.  Instead, because of your good growth and because a couple of the CF docs will head south in October to see patients in our area, we bundled more things into our visit today so we won't have to go back to Portland until November!  Thankful.  So, you got a baseline throat culture to see what type of bacteria is in your airway.  All CF patients grow bacteria in the lungs and airway.  Period.  The sticky mucous that will build in your lungs and airway over time is a breeding ground for bacteria.  Nothing to worry about right now, we are told.  Next up we learned about Albuterol treatments that you'll most likely need for the rest of your life.  *sigh.  Those will start tomorrow after we pick up your prescription and we'll be doing that twice a day.  After those 2x daily treatments we'll do CPT (chest physical therapy.)  This will involve cupping and clapping on various points on your back and chest to get into the routine of daily loosening mucous.  Right now there is no medical need for it, but it is a proactive measure. This will take 20-30 minutes each time and the Respiratory Therapist said a minimum of twice a day but three times a day is preferable.  Um, Lord, I homeschool.  I clean my own home.  I have laundry to do.  I must cook meals and feed snacks to ravenous, growing children. Any parent knows the list is long. A little overwhelming, but we will do it!  After a crash course in percussion techniques we waited for the lab.  They drew blood to check vitamin levels, particularly the fat soluble vitamins A, D, E and K which your body has a harder time assimilating.  They will also check your sodium level.  We have to give you extra salt daily because your body doesn't process sodium correctly so we will see where that is at as well.

All those above details only serve as a way to record details.  Typing the words and seeing so many strung together that I never dreamed I would one day type saddens me.  I really have forgotten normal.  This is not a complaint; it is a reminder to me not to hang on too much to this life.  I refuse to be a Christ follower who goes to meet the Creator of the universe and have him ask me why I didn't trust him through the trial.  I do not want him to ask me why I lost faith.  Why I lost hope.  Why I didn't wait for him with expectancy. Why I didn't believe he would bring restoration, confirmation, strength and establishment.  No, I refuse to fall apart during this or future trials, and I imagine this trial is in its infancy, just as you are Kate.  I want to declare and be known as a faithful, held daughter of Christ who walked through fire and came out safely, not because there wasn't pain and suffering in the process, but because I was held through it.  I never have to do this on my own.  Neither do you, sweet daughter. We have an awesome family, Kate.  You have the most amazing Daddy on the planet. He would do anything for you.  We have friends who have surrounded us near and far in prayer and encouragement.  We have wonderful, smart doctors, nurses and other staff giving you great care and giving us great help.  More than any of that, we know the One who fashioned you, Kate.  He is writing your story, and it's so beautiful so far.

My Hope, My Salvation

Sweet Kate,

We have asked for prayer in the last few weeks specifically for your growth, Kate, and I am here to praise my Savior that he is answering that prayer beyond what we hoped! We were with you at OHSU two weeks ago today, and your weight was 6 pounds, 9 ounces. A week ago today I took you to be weighed at our pediatrician's office, and after 5 1/2 days taking enzymes to help with malabsorption your weight had climbed to 7 pounds, 1 ounce. Today, after almost two weeks on the enzymes you had gained 13 ounces in the past week to 7 pounds, 14 ounces!!! Two of our nurse and medical assistant friends were celebrating with me as we saw that number on the scale! You are officially on the growth chart now at the 3rd percentile! It only took us about 7 weeks, but you are doing so great, sweet girl. You have gained exactly two pounds since birth, and although we're not on the fast track, you are gaining at an accelerated rate compared to before. I asked my nurse friend what is "normal" for weight gain at this age and she said 30 grams a day, and your weight gain in the last week has been 50 grams a day! Woohoo! I left the office to drive up to get your brother Matthew from Grandma's house, and I praised God for his favor upon you. Thank you, thank you, thank you, Lord. He answered our prayers! Kate, you are so content, so easily calmed in any situation; you are lovely and sweet and GROWING! That is enough for today.

Our prayers continue for your growth to remain strong and quick; the better you grow, the better your prognosis. We would also ask that those who are reading would pray for good health for you because people around us are starting to pick up viruses, and you have been congested for a few days. It makes me nervous, and I think it's from the smoky air around us due to a forest fire not too far from Lake of the Woods. We're staying in most of the time, but I am praying for the congestion to not affect your lungs in any way. For today, Kate, I am resting in sweet confidence that our God is sovereign over every detail of you. He is your hope and your salvation, precious daughter, and you will not be shaken! I love you, Kate Elisabeth!

Find rest, O Kate,

in God alone;

your hope comes from him.

He alone is your rock and your salvation;

he is your fortress,

you will not be shaken.

Psalm 62:5-6 (personalization and emphasis mine)

Sufficient

Little Love,

Sometimes life just doesn't feel good. Today developed into that kind of day. Conflicts with one of your siblings just put me in a funk this afternoon, and I couldn't quite get out of it. I was emotional and teary the rest of the day. Yuck. Your Dad and I talked tonight, and I just shared with him that I think a lot hit me today that I hadn't dealt with yet. Everything just felt...bad. Not quite right. I prayed a lot today, Kate, and tried to take these thoughts captive. Thoughts that threaten to pull me down into a dark pit. Thoughts about the future that I have no. control. over. Thoughts about all that I need to do to raise five amazing, beautiful children. So, tonight after dinner I spontaneously grabbed your two older brothers who are 3 and 5 and took them blackberry picking down the road. At first they weren't too excited as they picked around the thorns and tried to find ripe berries down low. They were gingerly stepping, cautiously and carefully picking and doing a great job trying to find ripe berries at the bottom. Unfortunately for them the big juicy berries are very often at the top. It's where the warm sunshine ripens them into full blackberryness more quickly! They're the ones hardest to reach sometimes. The effort is always worth it, though. The goodness is there for the taking, but sometimes we get scratched by thorns in the process. Today was a thorny day. But there's always beauty in life, and I so enjoyed watching your brothers carefully pick two buckets of berries, growing more excited as the buckets got more full. Matthew kept telling me as we were just about finished that he was having so much fun and that I was the best mom ever because we do fun things. I thought, "Really? Because I feel anything but fun on most days." That measure of grace and love from him brought life to my sad soul. God is there, Kate, in every moment. He's there in the sadness. He's there in the thorns. He speaks through a five year old by giving love and grace. My weaknesses allow God's power to rest on me. Lord, let me glorify you, even when I feel broken! Let me boast in my weaknesses, not because they bring me pity or attention but because your grace is enough. It's sufficient. Sufficient. Father, let your power rest on me! Let my life show that God's grace is enough for this moment, and the next, and every moment after this.

We came home and made blackberry smoothies with a Vita-Mix full of blackberries mixed with coconut milk and ice. Sweet. Rich in color. Good. So is life. You don't appreciate the sweet without getting scratched by thorns, sweet girl. Mommy is still processing some hard things. I guess we all are in some way. Friends go through dark days. Relatives get diagnosed with hard things. Sometimes life is just difficult. Lord, let me savor all the sweetness you have given us. Let me take dark thoughts captive and focus on the beautiful tapestry you are making of our lives. Kate, your life is a beautiful piece of the work the Lord is doing in us. He is walking through some dark moments with us to bring us closer to him; closer to the sweetness and treasure that is HIM. Let me not miss it, Lord. Let your grace in this moment be sufficient for me.


But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9

"...and we take captive every thought to make it obedient to Christ."
2 Corinthians 10:5

The Humility of Grace

My dear Kate,

You are six weeks old today! Already. Six weeks ago you had been born after an easy 5th c-section and I heard your first sweet cries at 8:14 a.m. You were born at exactly the same time as your brother, Matthew, and hearing that you were a girl made me cry with joy and thankfulness! Your Dad and I have never found out during pregnancy the gender of our sweet babies, so hearing those words filled us with great joy! We have so enjoyed getting to know you over the past 42 days. You are lovely, sweet, dainty, cuddly, content, and you love to snuggle.

We heard hard news about your health in intervals during these last weeks, and my heart carries a bit of a scar now that was not present before. I look at you so many times through the day and still can't believe that your perfect body isn't perfect; that your Dad and I somehow had everything to do with you having Cystic Fibrosis. I am forever grateful to the Lord for blessing us with a large family because I am sure we would not have five beautiful children if we had known our carrier status for CF eleven years ago. That is mercy from the Lord, my sweet Kate. You will always have the blessing of three amazing, strong, funny, loving brothers and a protective, nurturing, beautiful sister. Anyone would be lucky to have that!

These past weeks have put us in a situation where we are very vulnerable. We have been opened and exposed as we have dealt with this news. We have been allowed to be in a position where the Lord is allowing us to walk through something we never would have chosen. And, he has allowed those around us to rise up and pour His love and His blessings and His mercy upon us. I. Am. Overwhelmed. Your Dad and I have always been ones who prefer to love on and give to others. We love to surprise people by cleaning their homes when they're out of town, or do yard work in the same manner. It feels good to love on people when they least expect it! I'm not sure why it doesn't feel as good to let others do that for us, but I have struggled with that. You will always be the recipient of lots of love and care; you won't know any different, and I know the Lord will teach you so much through the mercy of Himself through others. I am still learning, daily, how prideful I am. I like to have it all together (or appear to); I prefer to be the strong one; I am happy to dole out encouragement and advice to others. But to be on the receiving end is uncomfortable. The Lord has been speaking to me about this and how much pride is involved in "having it all together." Who am I kidding, Kate? None of us have it all together, and I am fooling myself by thinking that without Him I can do anything. Oh, I can do stuff, but it looks all wrong and ugly! There is such humility in grace. There is such gentleness in friends who pour out scripture to us, who say they're praying and are, who love and bring coffee and pray with us and just walk alongside us. The beautiful picture it paints of Christ's love for us brings me to tears.

He is so faithful, Kate! I want to shout it from the mountaintops, but instead I will write it here for whoever needs to hear it. It's your story, Kate, but it's always going to be God's masterpiece being painted through your life. His love is so real. His mercy is overwhelming. His grace is humble. Right now I am drowning in his grace, and I know I'm right where I should be. There is nothing more sanctifying than seeing His extreme love, mercy, protection and grace through His word and through His people being real in our own lives. He is daily showing us Himself through every person who reaches out to us because of you, my sweet girl. Your little life is beautiful, Kate Elisabeth. I am so privileged to be a part of it.

Trust in Him at all times. Psalm 62:8

"God often has to bring us not only into the place of suffering, and the bed of sickness and pain, but also into the place where our righteousness breaks down and our character falls to pieces in order to humble us in the dust and show us the need of entire crucifixion to all our natural life. Then, at the feet of Jesus we are ready to receive Him, to abide in Him, depend upon Him alone and draw all our life and strength each moment from Him..." A.B. Simpson

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