The Call

A year ago today we got the call that changed our lives forever: "The results were positive for Cystic Fibrosis." Remembering every detail of that exact moment (smells, weather, sounds, people) ran through my head often today. I mulled over the events of that day today like a timeline. And now, my growing daughter sleeps peacefully in her crib, and she is amazing. My oldest son asked me in the last week, his voice thick with emotion, if I would choose to cure Kate. Without hesitation, I said "yes." It was easy to answer because I know I don't get that choice. Then he repeated words to me that I know I've spoken over and over, "I don't know if I would, mom. We've grown so much and learned so much." Yes, we have. We have been carried through the last year with so much love and grace. I'm in awe of God's kindnesses to us all the time. I had multiple friends text me today to check in because they knew this could be a hard day. Then peace like a river, attended my way, and I can say it is well with my soul. So tomorrow is a new day, and we fight on for our sweet Kate. Wouldn't trade her or the lessons for anything. 

371 days

My beloved Kate Elisabeth,

Often so serious...taking in all the world around you by studying it carefully

It was just 371 days ago (almost forgot February 29th) that we joyously welcomed you to this world.  We had celebrated you and longed to meet you for the 9 months before that and for the years before that we waited and hoped in anticipation for another daughter.  I cried when you were born and was filled with brimming over thankfulness for such an amazing gift.  It's a girl.  Such sweet words filled the operating room that morning at 8:14a.m. Your dad and I rejoiced.  You will know your story well, and that is why I document it.  There is so much to remember, so much I'm not willing to forget, so much happiness, so much hurt.  It all must be remembered to see the beauty in its entirety.  And you, my precious girl, are entirely beautiful.  All this beauty despite a diagnosis that forever changed our family on August 17; despite little bits of bad news along the way...your life is beautiful.

A dolly from Mary Allison

Your watermelon, cantaloupe, blueberry, strawberry cake.  You loved it!

My mind swirls with the events of the past year and five days.  Where to begin to process everything?  I guess I can't compartmentalize it all neatly in my mind so that it all makes sense so I continue to walk in trust knowing that the plans planned for you long ago are good.  They are. 

You are walking (at almost 11 months), you are saying "Dadda" (your favorite word!), "Mommm", "Hi", "Bye", "Uh-oh", "Done", "Woah."  You are so loving and snuggly yet fiercely independent.  You like your space.  You will tell people when you want it.  You give loves by leaning your head on our legs, arms or whatever part is closest to you and say "Ohhhh..." in such a loving, sweet tone.  It's definitely an "Ohhhh" of love.  You have traveled to Portland five times and to Hawaii one time.  We'll pick the Hawaii destination any day, right?  You are incredibly adored by your four older brothers and sister.  How fortunate are you to have the love of so many within your own family? 

My heart is full of emotion for you, Kate, and I wonder and worry about your future.  I also bask in the goodness that God has shown us in the last year.  He has protected you on so many occasions when you should have been sick.  He has given you a family that will always fight for you and love you, protect you, and advocate for the best care for you. 

This journey ahead of you wasn't chosen but allowed, and I know that as we have learned so much in the last year we will continue to trust the Lord and what he has ahead for you. 

Enjoying a cantaloupe heart :)

My admonition to you, Kate:

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.  James 1:12

And:

In him and through faith in him we may approach God with freedom and confidence ... I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Ephesians 3:12, 16-19

What I know I must do for you and your brothers and sister:

One generation shall commend your works to another, and shall declare your mighty acts. On the glorious splendor of your majesty, and on your wondrous works, I will meditate. They shall speak of the might of your awesome deeds,  and I will declare your greatness.  Psalm 145:4-6

Kate, I never want to miss the opportunity to glorify our God through whatever life brings us.  Our life has been full, fun, and amazing, and you are part of our story and of a much larger story.  I said from the beginning...His faithfulness will be your story.  And it is.

Finishing your Birthday with a little "Peek-a-boo" with brother

Breathing

Dear Kate,

This is one of those posts that I thought, "Really, is it a big deal?"  "Should I take the time to write this down?"  Yes.  I have encouraged a friend recently to write down her confirmations and victories in regards to her and her husband's decision to homeschool.  I must take my own advice sometimes :).  It's not a huge thing, but I was reminded of Psalm 145:4:

Let each generation tell its children of your mighty acts;
let them proclaim your power.

That is the entire point of this blog to you, Kate; that I would tell you (the next generation) of God's mighty acts.  I will proclaim his power, goodness, faithfulness, and grace to you, and his MERCY!  His mercy astounds me.

We started your first round of 56 doses of TOBI http://www.tobitime.com/info/about-tobi/About-TOBI.jsp this morning, and it started badly.  You cried, writhed around, pulled off the mask, pulled out the tubing to the nebulizer.  I was sad, frustrated with you, trying to instruct children around me who were needing to finish various jobs...and then I prayed.  It still surprises me that sometimes it is the last thing I think of to do.  I don't even know what I prayed, but maybe it was something like "Please help. I'm herding cats here, Lord.  I'm tired. Be with Kate..."  Another minute went by and then I felt a supernatural peace come over me.  It was for sure the peace that passes all understanding.  Chaos all around me, you were not tolerating your TOBI treatment, and then I felt this calm peace come over me.  I know you felt it too, Kate, because then you calmed right down, layed there for a couple minutes, and went to sleep.  I cried.  Did he really just answer my prayer in such a sweet, easy way?  Absolutely.

A friend on Facebook posted this Matt Redman song yesterday, and it was such an encouragement to me.  How many days do we go through that we know in our heads that God is with us but it completely misses our hearts?  It happens to me often.  I know that I know that He is faithful, that He is with us, and that we never walk alone. Sometimes it's just good to hear it again and again and again, and then it sinks deep into our hearts. 

Scars and struggles on the way

But with joy our hearts can say

Never once did we ever walk alone

Carried by Your constant grace

Held within Your perfect peace

Never once, no, we never walk alone

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

Every step we are breathing in Your grace

Evermore we'll be breathing out Your praise

Sweet Kate, our month of TOBI has begun.  *sigh.  But, I can sit with you and watch you and know that we are not alone.  God is with you, Kate.  You are breathing in his grace, and we'll always breathe out his praise.  Always.  In every situation.

Pseudomonas...again

Sweet Kate,

Wasn't it just a few days ago that I was basking in the goodness of all things ;)?  All was right in the world...and then it was last Friday.  We saw the Cystic Fibrosis doctor here in town (a couple Portland CF docs come down 2x a year to have a clinic here) and I be-bopped in there with you and didn't have a care in the world.  I just wanted to know your weight and didn't have any concerns.  But, then the little chinks in the armor come, and I have to steel myself against worry and doubt and fear.  Apparently your airway culture in February was positive for pseudomonas bacteria again, http://pseudomonas.com/cystic_fibrosis.jsp and it slipped through the cracks otherwise known as the busyness of a doctor's office, and we didn't get a phone call.  We had not met the doctor from Friday's visit, and his tone and mannerisms were quite serious through the entire visit so I kept trying to gauge whether I should be really concerned or this was simply his way of providing patient care.  He re-prescribed TOBI for you to go on for another month, 2x daily through the nebulizer.  *sigh.  I mentioned that it took two hours a day when we did our first round of TOBI in October, he told me it should only take 10 minutes, and I later called the nurse at OHSU. He told me we only need to give it to you for 20 minutes each time because of your size and age and not to worry about the remaining medication for that dose.  Relief!  It was a huge bright spot in an otherwise cloudy minded afternoon.

So, little love, you are as great as ever.  We will do TOBI for 30 days and carry on.  I am doing a 40-day devotional from Dietrich Bonhoeffer's writings, and I was especially touched by day 9 which *happened* :) to fall on Saturday.  One particular passage speaks of the disciples: "Instead, they bear what is laid upon them and what happens to them in discipleship for the sake of Jesus Christ. Finally, disciples will not be weakened by suffering, worn down, and embittered until they are broken.  Instead, they bear suffering, by the power of him who supports them.  The disciples bear the suffering laid on them only by the power of him who bears all suffering on the cross.  As bearers of suffering, they stand in communion with the Crucified."  I would not say we are in any way "suffering," but it is helpful to get some perspective when the weight of life's burdens gets heavy on one's shoulders.  The burdens and pain are not in vain! 

I had a sweet friend send me a message on Facebook, and God in his kindness had her share this with me: 

Hey Mrs Kelly Wittmers.
I love you.
I am sorry that the air was let out of your sail.
I can imagine but I sure can't know what you are feeling.
I will pray.
I was reminded of Kate....today. I was reading about Jesus healing the man with dropsy....a fluid build up and it made me think of Kate...producing too much of something like this man....and Luke, a doctor by trade, watching Jesus heal this man on the Sabbath day. And Jesus went on to speak about a wedding feast and inviting the poor, crippled, lame and blind.....and the host calling a guest to move to a place of honor. I am thinking that maybe you are this guest. I can see your family....faithfully, with humble hearts....occupying a place along this long table at the wedding feast our Lord has prepared.....and along comes Kate and Jesus pulls out that chair up near the head of the table....up near him, "Shane, Kelly, you and the kids come up here."

I sat sobbing in the late hours of Friday night not because I feel that we are deserving of any special recognition or that your story, Kate, is not unlike any of those who live in pain, or are trapped in fear, or who bear secret shame.  I was just reminded that God knows.  He is the All-Knowing One.  He is kind, and he knows YOU and wove you together just as he intended for his glory.  We will sit at the wedding feast, and I can't wait, and you will be completely free of whatever this short life makes you deal with.

Pseudomonas, bring it on.  This Momma will fight against you, and you have no idea who you're dealing with.  The Maker of the universe has my back.  Science research is better than ever.  Fight on, Kate.

And Then It Was June...

Sweet Little Love,

Mommy and Kate at Poipu Beach--May 2012

It is June already!  Oh my goodness.  I am so thankful that aside from an amazing trip to Kauai at the end of April and the Great Strides event we just participated in, there is really nothing to report.  Your health so far (with our normal daily routine, of course, of enzymes, vitamins, etc) is so much better than I expected, and I couldn't have imagined you would be doing so well.  When I started this blog I anticipated there would be so much more to document that would be negative but part of your life story. It's so surreal, actually, to fathom all the emotions I felt back in August through October in particular and now to be here.  Those wounds have healed, my faith has grown, we have been shown more love than I could have imagined and in so many ways.

10 months old!

We will see the Cystic Fibrosis Clinic doctor on Friday here in town.  You haven't been seen in Portland since February although we've seen our local pediatrician for your 9 month check up.  I am anxious to see your weight and growth charts.

We participated in our first Great Strides event last Saturday with many family and friends walking with us in support of Cure for Kate. It was a great morning. We raised over $4500 for the Cystic Fibrosis Foundation, and I'm so excited and happy about that. It felt good to be a part of something much larger; a common purpose for all those in some way affected by Cystic Fibrosis.

We will always fight for you, Kate!

Daddy loves you so much

Our amazing team for the Great Strides event

So close to walking!



I love you so, so much, Kate.  You are so much fun, you love your brothers and sister (and they LOVE you!), you are so close to walking, you are so determined, spunky, vocal, and you may be my biggest training challenge yet :).  You took one to three steps multiple times on Sunday and have walked a little bit each day since.  I'm so proud of you, Kate! 

Bloom and Blossom

My dear Kate,

You are quickly approaching 8 months old, and you are doing so well.  I cry every time I think about it; every time I take the time to quiet myself and acknowledge how kind the Lord has been to you and to us.    I know that we have not been "lucky" but the recipients of a great kindness, an extreme mercy, an overflowing goodness.  Why do children get sick?  Why is there suffering in the world?  Why?  Why?  If God is so good and so full of love, then why?  WHY NOT?  We have claimed from the beginning of time that we know better, that we can make our own choices, that we are better off on our own, and God in his kindness has allowed humanity to experience the devastation that sin brings to show us that we belong to him, that this world without him is dying, and then he ultimately sent his son as the ransom for us.  Because of sin death will come for all of us, but in between our birth and death there are moments of pure bliss (we don't deserve those either!) and pure devastation. Tim Keller says, "Jesus suffered, not that we might not suffer, but that when we suffer, we can become like him." 

We have experienced both in the past 8 months, beginning with the bliss of your sweet birth.  It was the first time I have cried during a delivery, and I remember just mouthing "...thank you, thank you, thank you" to my Jesus when I heard you were a girl.  I was overcome with thankfulness.  My Savior knew even then that the devastation would come for us less than a month later, and he knew it would hurt.  He was not removed from that hurt; he didn't NOT care.  He cared so much.  I know that I know that he suffered and died for all sin, and death did not have any victory over him or us under the new covenant of his blood.  So, Cystic Fibrosis does not have victory over you whether you are healthy or not.  Our life is a vapor, Kate, and we will be home with God someday.  "Yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, 'If the Lord wills, we will live and do this or that.'”   James 4:14-15

I know your story has been so beautiful so far but we are still so close to the beginning.  Doubt sets in at times, and it catches me in the throat to think that your breathing may not always be so peaceful.  Your lungs may not always allow fresh air to pass in and out with such grace and calmness.  You may fight pseudomonas bacteria again, and I'm sure that you will.  But, but, but, look at you right now! 

Missing one from the crew.  You are loved, Kate.

I took you in last week to see our beloved pediatrician, and you are over 17 pounds, your lungs remain clear, your oxygen levels are perfect, and you are my most determined child so far.  In the last month you have started crawling, standing at furniture, and climbing stairs!  You also got your first little tooth on the bottom right, and that left one is ***this*** close to coming through.  You say "dadadadada..." through your days, and you love to talk in a loud voice!  :)  You are eating avocado, yams, pears, bananas, peaches, chicken, etc. with lots of coconut oil and other goodness mixed in.  Your appetite remains good, and people who ask about you marvel and say "You'd never know there was anything wrong."  Yes, and it is only a glory to my Jesus.  Let me always be so clear that I praise him no matter what.  In these days, though, I am especially thankful that my family is well, that we are at the end of the healthiest winter we've ever had, that even when your brothers or sister get sniffles or coughs, you have stayed well in 2012.  Thankful for you and about you, my beloved Kate Elisabeth.  You have bloomed into a beautiful baby girl who is gaining weight and growing well, and you're blossoming into a testimony of such goodness that only comes from above.  Always praise him, Kate, even when the storms come.  I love you, sweet girl.

March 6, 2012

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.