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!