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