Leaving Winter

Our precious Kate with her biggest brother who adores her

***I wrote this in January, and time has a way of passing as do the days and weeks with it.  Sometimes emotions linger, as these have.  Sometimes things are a gradual passing, as winter is.***

I was driving in the sunshine a week or so ago, thinking about this little blog, hoping to create a legacy of God's goodness in writing for Kate, and pondering the heaviness in my soul.   I wasn't really understanding it at all.  It made no sense.  Compared with our circumstances of the last six months I should have been filled with glee or at least some sense of gladness that those days have passed.  I was driving Ben to his last orthopedic appointment for his arm.  All is well.  Another x-ray in 6 months to make sure the healing has progressed despite some angulation of his radius.  Sarah had just had her last appointment for her spiral tibia fracture the day before that.  She will be swollen and limp for quite some time as the bone and muscles must strengthen, but she is healed.  All is well.

But yet it isn't.  My soul is heavy.  Burdened.  Too many layers of clothes on a warm spring day.  Overdressed.  Heavy. 

I have felt at the end of a long, winding, adrenaline-rushing roller coaster.  Roller coasters produce excitement, heart-pumping, wind-in-your-face giddiness and fear.  Once it gets going you hang on and hold on until the ride comes to a stop.  There's no getting off after it starts.  These last 180 days or so have left me at the end of one of life's roller coasters.  God-ordained, God-planned, God-allowed.  The ups and downs experienced in those days seem to have settled for now.   And yet the peace that passes understanding of those days seems to have given way to burden in my soul.  Don't get me wrong.  I'm not walking around in a general funk.  I will smile at you and engage in your life and be sincerely happy for all that is going on around me that is good and happy and wonderful.  It's that deep inner space in me that seems a little cloudy.

The car is warm,  the sun is shining glorious, life is good, bones are healed, daughter is thriving, and yet it feels like winter in my soul.  Grey.  Barren.  Cold.  Desolate. 



Then, as always, I heard him.  Leave winter.  He takes us through the winter to give us rest; to dig our roots down deep in Him despite the darkness, grey, wet, heaviness.  He brings the seasons for growth, variety, color, harvest, bloom, rest.  When the winter days are dark, cold, wet, and barren, he doesn't leave us.  Spring is just around the corner, even on the darkest day.  Looking outside on a winter day makes one forget the beauty of spring.  It was so many seasons ago.  Creation is always preparing for the next season.  Winter's dreariness makes way for spring's splendor.  The smallest signs of life appear.  Bulbs get ready to burst forth in colors many and varied.  Trees rest and prepare for their crowns of leaves.  Grasses prepare to come alive in all shades of green. All looks dead, but life is getting ready to reveal itself in glory. 

I am getting ready to leave winter.  I won't stay in this heaviness.  I will lift up my eyes to the hills because my help comes from him.  I know God is with me and teaching me through yet another lesson.  I will shed this heavy coat and put my face to the sun because it is His gift.  All of it.  The winter.  The dark days.  They are only the prelude to the light. 

***Present day:  John Piper posted a quote on Facebook a few weeks ago that spoke clearly to me about the winter season in my soul.  "Dear happy young people, prepare for deep loss and long sadness by feeding a kind of joy that thrives in winter."  Ah, so the joys of life that are like the bloom of spring, the sun of summer and the golden of autumn must be the preparation and cultivation of a deep joy that must be able to thrive in life's winter. 

 I sat today in my room and started to look through the box of cards that we have received since sweet Kate arrived in our family.  The tears were controlled, but the emotions were heavy as I relived each moment and word and timing of each note of congratulations, sympathy, encouragement, compassion and love.  The roller coaster!  I could feel it and how I just held on to my Savior through that time because there was nothing else but hanging on to the one who has always held me and who fashioned Kate and holds onto her with such mercy and kindness.  There are daily so many lessons of who He is, and I feel I have been granted a sacred privilege to be a part of Kate's great story through these months.  God allowed a beautiful daughter to be born in the heart of summer, with sun hot and my other babies golden.  He almost immediately led us into the fall of a new life we didn't dream of and we stumbled, picked ourselves up and made our way through.  And now winter is passing.  Spring is coming, and I will be ready for new growth, new lessons, new trials.  Lord, make me ready.

The most beautiful gifts I've ever received

The Sparrow

My dear Kate,

It is a joy to tell you that I don't have much to share about your health because you are PERFECT.  It is so often that things get quiet in the car, in the house, or when I steal away to the laundry room (no one likes to go in there...it involves work!) that I am brought to tears by God's kindness to you.  You are a baby filled with joy, and when I look in your eyes I'm so thankful you have no idea that you have a chart in Portland at a Cystic Fibrosis clinic or that you have been eating gravel (pancreatic enzymes) since you were four weeks old.  Life just goes from one smile to another for you.  You bring us all so much joy.  You ate your first avocado yesterday (six months old!!) with coconut oil and salt (needed for CF patients) and you gobbled it up!  You knew exactly what to do with real food because you've been eating enzymes since August!  It was fun to watch you keep opening your mouth like a sweet little bird for more, more, more. 

Silly picture with Mommy after a bath.  5 months old

I was perusing Pinterest last night for ideas for decorating the room you and Sarah share.  It was fun to look and dream as if I had all the time and money in the world.  I kept running across a photograph of a room someone had done where they had put vinyl lettering on the walls.  One wall over the crib had "His eye is on the sparrow" and on another wall they had a tree and above it the words "and I know he watches me."  I looked up the lyrics because I hadn't seen them or heard the song in so long and was brought to tears.  He. Is. Faithful.  Am I getting redundant?  I don't ever for one minute, Kate, want you to doubt it and what it means. I think I am still trying to grasp it myself!  It means he is close.  He is real.  He is present.  He watches over you.  I know he does! I see it in how well you are. Even if you weren't, it doesn't change HIM. I love him, and he's been so kind!   He sees the sparrow and knows it.  That little sparrow never wonders or worries about home or shelter or life.  Jesus is our portion, and that is the treasure.  It is the hope during the most difficult days of being a mom to five precious lives.  It is the most difficult, draining, challenging work I've ever done, and I fail every single day.  But, God doesn't.  He gives grace and mercy when I really don't want to.  Why do I feel the need for my own justice when all he's ever given us is free, unmerited favor? 

 

His Eye is on the Sparrow

Why should I feel discouraged,

Why should the shadows come,

Why should my heart be lonely, and long for heav’n and home, when Jesus is my portion?

My constant Friend is He: His eye is on the sparrow, and I know He watches me; His eye is on the sparrow, and I know He watches me. Refrain: I sing because I’m happy, I sing because I’m free, For His eye is on the sparrow, and I know He watches me. “Let not your heart be troubled,” His tender word I hear, And resting on His goodness, I lose my doubts and fears; Though by the path He leadeth, but one step I may see; His eye is on the sparrow, and I know He watches me; His eye is on the sparrow, and I know He watches me. Whenever I am tempted, whenever clouds arise, When songs give place to sighing, when hope within me dies, I draw the closer to Him, from care He sets me free; His eye is on the sparrow, and I know He watches me; His eye is on the sparrow, and I know He watches me.

God loves you, Kate Elisabeth. 

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.