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:
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.