Living in the Shadow

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This summer has been such a mixed bag. There have been many great things about it. I love the more relaxed pace of the afternoons and long evenings. Last night after dinner the three of us headed down to the park so Jaime and Lucas could play soccer and I sat on a park bench watching them run and laugh and enjoy their health and freedom. It was heavenly.

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Run like the wind, boys!

I’ve loved the lazy mornings and the long bike rides and eating breakfast at 11am. I’ve loved the swimming and biking and playdates. Sometimes I think I never want summer to end.

This, however, is the most I’ve ever struggled with my CF in the summertime if I’m remembering right. It’s as if my lungs have forgotten that this is supposed to be my healthiest, most carefree time of the year. Instead I spent most of the month of June on a some combination of IV antibiotics, oral antibiotics and steroids. I had the month of July “off” but struggled through a particularly challenging adjustment period. Once I was through the adjustment phase I was dismayed to find that my lung function had dropped back down five points and after consulting my doctor, we began a round of oral antibiotics at the start of this month. They didn’t seem to be cutting it so last week I started a burst of steroids as well. I can’t find my footing and my lung function is stubbornly refusing to climb back up, even while on the medications. It’s been incredibly disheartening.

My emotions have taken a pretty hard hit, and that has perhaps been the hardest part of this summer. Just three short months ago I was flying high. I was so relieved and excited to have gotten through the winter relatively unscathed for the first time in several years. My heart was brimming with hope and thankfulness. I thought I had finally regained the strength and stability I’d been laboring towards for the past two years and I fully expected to continue to gain health and strength through the summer months. Suddenly I could imagine things for myself that I barely dared to hope for during some of the hardest moments of the past two years. I thought that after jumping hurdle after hurdle I’d finally reached my goal. Yet here I am, no better off than I was two years ago. Back to the beginning again. I imagined blue skies and puffy white clouds, and instead the skies have been dark and the storm clouds menacing.

And it hurts. Dreams are threatening to slip away forever. The hope, the joy, the anticipation I felt last spring seems like some sort of cruel joke now. I feel betrayed. Was I a fool for expecting those clear skies?

I know that in these hard times, the only thing that keeps me from sliding into an abyss of despair and bitterness is my hope and trust in God. But the truth is, it can be very hard to trust God in times like this. As humans it’s our natural tendency to assign blame when things go wrong. It makes us feel like we have some control over our destiny. So in these circumstances, when there’s nowhere to point the finger, sometimes I find myself wanting to blame God. Is God responsible for my current state of health? No, I don’t believe that. But part of me wants to be angry that after filling my heart with hope and joy this spring, He didn’t stop the events of this summer from happening. Why.  Why?

I recently re-read the book Disappointment with God by Philip Yancey. If you haven’t read it, you really should. It’s an open, honest book that explores the questions many of us are hesitant to voice aloud–questions of God’s fairness and accessibility and why He doesn’t consistently swoop in to prevent our hurts–why evil and disease and death seem to have free rein in this world. In one chapter, Yancey discusses Job, specifically The Wager at the beginning of the book, where Satan asserts that we humans are not really free. He argues that we only love God because of what He does for us; that we only love him because of His blessings. As the story goes, Satan is proved wrong by the life of Job, who amidst a staggering amount of suffering, still clings, even if by a thread, to his hope and trust in God.

Satan denied that human beings are truly free.  We have freedom to descend, of course–Adam and all his descendants proved that. But freedom to ascend, to believe God for no other reason than, well…for no reason at all? Can a person believe even when God appears to him as an enemy?…When tragedy strikes, we will live in shadow, unaware of what is transpiring in the unseen world. The drama that Job lived through will then replicate itself in our individual lives…Will we trust God? Job teaches us that at the moment when faith is hardest and least likely, then faith is most needed. His struggle presents a glimpse of what the Bible elsewhere spells out in detail: the remarkable truth that our choices matter, not just to us and our own destiny but, amazingly, to God himself and the universe he rules.” Philip Yancey, Disappointment with God, p. 192-193

I don’t know why God is allowing these struggles in my life right now. Part of my healing is simply acknowledging that and admitting how frustrated and angry and hurt I feel. The next step is making the choice to have faith and to trust God. These feelings of faith and trust can be impossible to muster up on my own. That’s where I turn to the example of the man in Mark 9 who sought healing for his son. He acknowledged his doubt and asked Jesus to help him to believe. Similarly, the disciples asked Jesus to increase their faith in Luke 17. I imagine that Jesus was pleased with those requests. God is not surprised nor do I think He is disappointed with my angry feelings.  He’s my father, after all, and He understands hurt and pain. I think it makes Him angry too. I may be living in the shadow now, unaware of what is transpiring in the unseen world, and unaware of how this will all work out. But I am never in the shadow alone and my response matters. And so even though my heart is broken and wants stay locked up tight, I ask God to give me faith–faith to believe that He is trustworthy and that He will provide whatever it is I need. Faith that He will complete the work He has started in me and that His plan for me is good. I ask Him to open up my heart so that He can fill it with peace, and then hope and joy again.

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Photo by Joyce Gan Photography

“For I know the plans I have for you,” declares the Lord, “plans to prosper and not to harm you. Plans to give you a hope and a future.” Jeremiah 29:11

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Keeping Hope Alive

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As Jaime recently mentioned, our summer has been great overall! He’s a summer enthusiast, I’m a summer enthusiast, and Lucas has followed in our footsteps to adopt summer as his favorite season as well. We’ve enjoyed days at the pool, time in our garden, park trips, games, lots of soccer, visits with family, art projects and bike rides. If you ask Lucas, though, he’ll tell you that his favorite part of summer is sleeping in as long as he wants. I didn’t realize those attitudes started at the young age of five but I’d have to agree, sleeping in is the best!

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A pool date and ice cream with cousins! Well, ice cream for the cousins and a banana for Lucas.

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Playing soccer in the sprinkler.

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Perler bead art project meets Lucas’s love of deer signs!

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Scrambled States game with more cousins!

Jaime also reported that I had been back to the doctor after finishing my round of IVs and was relieved to see that my lung function had come back up to 38%. When I first began the IVs I wasn’t sure what to expect. When I was on them two years ago I went from feeling a little sick to feeling horrible within the first week. This time, however, I felt much stronger and more stable throughout. Relief flooded in when I felt my breathing ease and I knew I was headed back up towards that 38%. Then I started to hope for more. I thought maybe I could surge up into the 40s again which would give me a little more cushion in case my lung function settled. During antibiotic treatments, my lungs are healthier than usual due to reduced congestion levels and less inflammation. It’s not uncommon for my lung function to drop a few points after I’m off the medications, once my chronic levels of bacteria return with their accompanying symptoms.

I made slow and steady progress in the first two weeks of my IVs, but into the third I felt myself plateau. It’s okay, I assured myself, at least you’re back to baseline.  I remember telling my sister that I almost wished I hadn’t hoped for the 40s because it looked like it wasn’t going to happen. It’s tiring being a hopeful person sometimes. Allowing yourself to hope means opening to the door to disappointment. Hopes that aren’t realized lead either to despair or require me to readjust my expectations.

I decided to readjusting my expectations was the way to go. Having done so, I was relieved, even excited to blow the 38%. The rest of the appointment went well too–my blood oxygen saturation, blood pressure, temperature and pulse were all normal. My lungs sounded clear and my heart sounded healthy.  The only thing that gave me pause was my doctor’s confession that he would feel more comfortable once I strung together six months of stability and we saw that the 38% was sticking.

I wanted to feel joy about the 38% and satisfaction for how hard I worked to see that number again, and I did, at least for a time. But after a few days, I began to feel the weight of his comment. I know where he’s coming from. What happened to me–a sudden and not-easily-explained eight point drop in lung function is not a good thing. He has treated hundreds of CF patients over the course of his career.  He certainly knows that lung function can slip down after a course of treatment. He knows from experience that as baseline lung function drops, patients are more likely to have frequent infections and health becomes more difficult to maintain. He’s a compassionate and caring man but he never sugar coats the truth.

And so a few days after the appointment I felt myself sliding into a place of grief. I felt sad that somehow I have gotten to this place of 38%.  I grieved the fact that I was even temporarily pleased with it. Wasn’t it just yesterday I was struggling because I had dipped into the high 40s? And not so long before that I was stuck in the upper 50s, straining with every fiber of my being to get back into the 60s? The honest truth is, I am sick and tired of readjusting my expectations.

With these unhappy thoughts coursing through my mind, I entered the adjustment phase–the span of time that my CF symptoms spike up as my body gets used to life without the help of antibiotics.  This means hours of coughing each morning and again in the evening, back pain, headaches, and poor nights of sleep. It’s about as enjoyable as it sounds. I began to feel certain that I would work and strive and do everything in my power to maintain that 38% and that it wouldn’t be enough, and my lung function would slip down to a new, lower normal. Sometimes it’s hard to hold onto hope when you’re so frequently disappointed, and feeling awful doesn’t help either.

Alexander Solzhenitsyn, who spent years in a Soviet work camp (and therefore knew a lot about despair) said, “All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope.” Why is hope so important? We know from medical studies that hope itself has a healing power. Hope causes the placebo effect–where patients show improvements just because they believe they are taking a medication that will help them. Hope is such a strong influence that many drug studies are done double-blind so that the patients aren’t influenced by the unconsciously communicated hope of the researcher. There are studies that show that patients who have an attitude of hope experience much better outcomes than patients who feel defeated or depressed, and true hopelessness can even result in death.

Hope is an essential part of a healthy soul. When I’m hopeful I believe that there are good things ahead and that my life is worth fighting for.  It keeps me from giving up. I do get tired of readjusting my expectations. I weather plenty of disappointments in my life with cystic fibrosis. It’s hard that with a progressive disease, what I’m hoping for feels like “less” over time. Just two years ago I was hoping for 50% lung function. Now I’m hoping for 40%. Or even 38%. The numbers are less, but what is behind them is really the same. I want the health and strength to live a full and meaningful life.

The “small” hopes–hopes to recover from illness, hopes for a higher lung function, hopes for a better day tomorrow–they are important. If I didn’t wish for those things, if I didn’t think they were possible, I wouldn’t fight nearly so hard for them.  Sometimes they lead to disappointment. But better to hope and be disappointed than to live in darkness and despair.

I have other hopes too, ones that don’t require any adjusted expectations. I have the hope that God will transform and redeem my pain and bring wonderful good out of it–for me and for others. I believe that the ugliness and pain of this disease is only temporary but that the good God brings from it will be eternal. I don’t know all the ways God has redeemed my suffering but I have witnessed some things. I have seen my faith become stronger and deeper. I have been drawn and into a closer relationship with God and with others because of my dependency. I have struggled but I have also experienced victories. I have been knocked down but I have also overcome. The joys would not be so sweet without the hurts nor the victories so gratifying without the struggles. I know the eternal glories that await me when this life is through will far outweigh any loss I have sustained. I know God is using this disease for my good. I have built my life on that hope.

And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.

We wait in hope for the Lord;
    he is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
May your unfailing love be with us, Lord,
    even as we put our hope in you. 

Psalm 33:20-22

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A Different Kind of Strength

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Strength is something I think a lot about. Perhaps it’s because at this point in my life and at this stage of my disease, I’m often aware of the strength that I lack. I feel the weakness of my body every day in one way or another. I utter the words “God, give me strength” with more regularity than any other prayer. Sometimes it’s the mundane, like a heavy basket of laundry I have to carry upstairs or a sink of dirty dishes that needs my attention after a long and tiring day. I always pray it before I get on the treadmill and at the inevitable moments when I’m longing to get off the treadmill. I pray it over things more serious, like when I sense God is leading me to do something that I don’t think I’m strong enough to do, or when the future seems uncertain, or when I’m worried about how my disease is affecting Jaime and Lucas. I want to continue to live and to thrive even as I fight this disease. God, give me strength.

So what exactly is this strength that I’m asking for? What am I hoping that God will do for me? That’s what I’ve been pondering lately. What kind of strength does God promise to give?

There are many verses about strength in the Bible. Here are a handful of my favorites:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Christ who gives me strength. ~Philippians 4:13

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. ~Isaiah 40:29-31

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 about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” ~2 Corinthians 12:9-10

The notion of being strong in the midst of weakness is different from most traditional understandings of strength. I did a Google search of the word “strong” to see what images are associated with the word. There were pictures of muscular men and women, of heavy weights being lifted with ease. There were memes that included words like “brave, fearless, bold.” There were pictures of lions and sharks, clenched fists, super heros…even a picture of ultra strong toilet paper (you know, the kind that never rips or tears or leaves a residue). Strong.

In this season of Lent, I’ve been reflecting on the last hours of Jesus’s life.  I believe we have a lot to learn about strength, a different kind of strength, from Jesus. It has always brought me much comfort that while praying in the garden with His disciples prior to His death, Jesus asked God to take away the suffering that was to come. He asked for a way out. Jesus predicted His own death many times in the gospels. It seemed He knew it was God’s plan for our redemption. Yet in spite of that, when His suffering was at hand, He still pleaded with God to take it away. Although He was a sinless, perfect human, He didn’t want to suffer either. Resisting the pain and wishing for reprieve wasn’t a sign of weakness. I imagine He looks on me with understanding when I ask him to take away my pain, because He felt the same way.

When God didn’t give Him a way out, however, He accepted it, and there was great strength there. Jesus accepted pain that He didn’t deserve and trusted God to redeem it and bring immeasurable good from it. In the hours leading up to His death, Jesus endured all sorts of physical and emotional pain as He was beaten and falsely accused. His closest friends abandoned Him. He had poured out His life to love and serve and heal people, and in turn they abused Him and said all sorts of horrible untruths about Him. They demanded that He be tortured and killed. Yet Jesus looked on them with love and asked His Father to forgive them. He was not bitter in the midst of His suffering.

And while Jesus was on the cross, what incredible mental strength He exhibited. Jesus lost all physical strength while on the cross. He was first beaten and flogged and then nailed on a cross to suffocate to death. All the life drained from His body over the course of the hours of His suffering. We know that as the Son of God He could have summoned the power of legions of angels to remove Him from the cross and annihilate His enemies. But He didn’t. This kind of resolve is unimaginable. Many times have I been in pain or periods of struggle and have thought that I would do anything, anything to make it go away. Jesus had the power to stop his suffering with one word, yet He resolved to endure for our sakes.

He accepted the pain, He endured the suffering without bitterness or hate, He willingly surrendered His power, and He forgave those who had done the unspeakable to Him. And He died. But after three days, Jesus arose from the dead! And here we see the most notable aspect of Jesus’s strength, the strength to overcome. Jesus has overcome! Overcome sin, overcome evil, overcome darkness, overcome death.

I know that because of what Jesus has accomplished on the cross, one day I will go free. Free from this body of disease. Free from the chains that bind me. But while I wait for that day, I pray for strength; the kind of strength that Jesus demonstrated. I ask for strength in the midst of my weakness. Not necessarily the physical power to escape my struggles, but the power to accept them and endure them. I ask for the strength to choose joy and love over bitterness. I ask for the ability to trust that God will redeem any suffering He allows to come my way.  I ask for the strength to live a life worthy of my calling no matter my circumstances.  I ask for the power to overcome. This, I believe, He has promised me.

God, give me strength!

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The Lord is my strength and my shield; my heart trusts in him and I am helped. My heart leaps for joy and I will give thanks to him in song. The Lord is the strength of his people. Psalm 28: 7-8a

 

 

Another 20-Year Anniversary

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The year 1996 was a big year for me. It was the year Jaime and I started dating. It was the year I graduated from high school. After graduation, I turned 18. In the fall I headed off to college. There were lots of milestones!

There was another big event for me in August of that year. The first weekend, I went to meet the girl who was to be my roommate for my Freshman and Sophomore years of college.  I remember having a stomach ache on Sunday that weekend. Thursday of that week that I wrote in my journal about abdominal pain and fevers. Friday morning I had an allergy appointment and my mom took me even though I was ill, feeling that perhaps the allergist could shed some light on my condition given her medical background and expertise. Once we got there she began examining me and when she touched my abdomen, pain surged through me. I shot up off the table, surprising all three of us. She knew right then it was probably my appendix and rushed me across the hall to where my physician had his offices. Within a few hours I was in surgery.

These days, appendectomies are often done laproscopically, but 20 years ago, we weren’t even presented with that option. We were hopeful, however, that the procedure would be routine and I would be out of the hospital after a few days. That was not meant to be. Once I was in surgery, they found that my appendix was hugely swollen and had perforated. Infection had spilled out into my abdomen and infection and scar tissue were clinging to my large and small intestine. They had to remove portions of both intestines as well as the appendix.

At the time, it was also determined I had a mild case of bronchitis. Out of concern for my lungs, the doctors decided it was best not to put me fully under for the surgery. The exact details are fuzzy in my mind, so I turned to my journal to fill in the details. There I reported that they gave me a spinal injection but I was partially aware during the surgery. Apparently I was lashing out and hitting at the doctors and nurses. They gave me a shot after the surgery to help me to forget. I did forget the surgery itself but had nightmares for months after the procedure as my subconscious tried to wrestle with the horror I had been through. (Side note: if you hit medical personnel during surgery, however justifiably, they will label you “combative” and that term will follow you around for the rest of your life!)

The first memory I have post-surgery is being wheeled from the elevator into my room. I thought I was screaming and writhing in pain, but was told later that I was in fact deathly still and softly moaning. I wanted to die. I had never, ever felt such a degree of pain and misery and it seemed unbearable. My second memory is of my parents and two of my sisters arriving at my room with a big bunch of balloons. I remember the shocked looks on their faces when they saw me. I remember my mom rushing to my side, and the others leaving immediately. The next two weeks were the most difficult of my life up to that point. I was discharged from the hospital after several days only to be readmitted due to uncontrolled pain and swelling. The infection took a long time to get under control. I became undernourished and unable to eat. Weight melted from my frame. The surgeon, skilled but callous, implied that I was anorexic because I wouldn’t (couldn’t!) eat. He also blamed me for the seriousness of my condition, deciding I must have withheld information from my parents about how I was feeling. He didn’t take into consideration that CFers have stomach pain routinely which makes it seem normal and also builds a pain tolerance that is perhaps higher than average. The staff seemed annoyed and threatening when I pulled my NG tube out in my sleep on the second night. Nothing was going right. It was an awful experience.

There were good things that happened too–Jaime came to visit me and brought me a cheerful stuffed Tigger. My sisters and dad came to visit regularly. My aunt and grandfather came. People sent flowers and little gifts to cheer me up. And my long-suffering mother stayed by my side most of the time, fielded phone calls from me in the middle of the night when I was despairing, and read to me to help pass the time. One day she read these verses from 2 Corinthians 1:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (v. 3-5)

Those verses meant a lot to me during those weeks and the time of recovery that followed. It was the first time in my life that I was in real trouble. I was dealing with an infection serious enough to cost me my life. I was being cared for by a surgeon who was unkind and unfair. I was due to leave for college and didn’t know if I’d be strong enough to go. The future felt uncertain. And yet I felt God’s comfort deeply, perhaps for the first time. I found joy in knowing that this comfort I had received could be used to help someone else. It was the first time I personally grappled with the notion of redemption–that God could take a painful and ugly experience in my life and bring good from it. And He did bring forth many good things. I felt forever marked by God’s love and care for me during those days. I learned that life is indeed uncertain and disaster can strike at any time, but that God is a sure and steady anchor and can see us through any storm. I had a new understanding of what real pain was which made me appreciate all the more Christ’s sacrifice for me on the cross. My faith was deepened. I understood a little more about how much my sister Sheri had suffered with her CF and I felt compassion and respect for her.

I also had new eyes through which to see the pain and suffering around me, and once I got to college just weeks later, I found that hurt was rampant in people’s lives. I had friends who were scarred by abusive pasts, friends who were struggling with depression, and those simply looking for acceptance and love from a cold, hard world. I found I could relate to them a little better, and I felt deep sadness for the wounds that were ongoing, unable to be fully healed by the passage of time.

Although I thought my wounds were fully healed, years later, we discovered that this surgery was a big player in the infertility I was experiencing. In an exploratory procedure, our reproductive specialist discovered that my abdomen was full of scar tissue from the appendectomy and was it creating a mess of things. And unbeknownst to us, one of my fallopian tubes had been removed and tied off, a detail the surgeon failed to mention back in 1996. While the infertility was painful and difficult, it was another formative time in my life where I learned to trust God and accept His plan for me. In a spectacular show of redemption, Lucas was born on August 9, 2011–the 15th anniversary of that dreadful surgery. His birth on that day reminded me that our hurts do not go unnoticed by God. He sees, He knows, and if we allow Him to, He works all things together for our good, no exceptions. What a miracle.

That experience 20 years ago marked my transition from childhood into adulthood. It was a time of major growth for me. It was also the first of several times where I was in real danger and God preserved and protected my life. After that I knew without a doubt that He had a plan and a purpose for me. I knew that my life wouldn’t be perfect–couldn’t be perfect in a world so marked by pain and suffering. But I also knew that He would be my faithful guide and companion, and that He would provide whatever I needed. And He has. Great is His faithfulness.

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Do I Hate CF?

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Wonderfully Made

I have seen many people comment about hating cystic fibrosis. CF is personified as the enemy and the accusing finger is pointed. We are angry with it and we hate it. We wish to stamp it out forever. I think it’s natural to look for something to blame in the face of adversity. We need somewhere to go with our anger and frustration. Maybe a part of us feels that if blame can be assigned, and someone is responsible, than bad things are preventable.

Certainly these feelings of rage towards cystic fibrosis are not unfounded.  Cystic fibrosis is an awful disease.  It causes bodies to have great difficulty functioning.  It causes pain and suffering.  It threatens survival.  It steals years of life, health, and the very breath we breathe.  It separates families. It took my sister’s life at 35. I now struggle with the effects of this disease every single day of my life and they are not pleasant. I have felt that anger. I have felt bound by CF.  There are plenty of times that I. Want. Out. I assume my life would be so much better without it.

But when I hear people say they hate CF, or when the thought crosses my mind, there is a part of me that feels uneasy.  These comments have almost felt personal at times. It may be partially because I don’t like aggressive, angry words.  But there is more to it. Although cystic fibrosis does not define me, it is just as much a part of me as my blond(ish) hair, or my blue eyes, or my blood type. It is written in my very DNA. There is no version of me that could exist without it.

Psalm 139 verses 13-16 say this:

“For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

God created me and made my body wonderful, cystic fibrosis and all. I believe that the presence of diseases like cystic fibrosis are a deviation from God’s perfect creation: that they are a result of the powerful presence of evil in the world.  They are certainly not what God intended.  So I don’t mean to suggest that God glories in the ugliness and devastation of this disease.  But He does glory in bringing love, life, strength and renewal out of pain and struggle. God brings beauty out of ashes.

And so from the time I was born, God began the wonderful work of redeeming this cystic fibrosis, yes, this disease, this hardship in my life, to be not a despised part of who I am, but an instrument of good in my life.  I have learned many lessons from this disease–lessons that have increased my faith, deepened my character, strengthened my relationships, given me perspective on what’s important, and put me in a place to be able to reach out to others.  CF has been a great burden, but also a great blessing.

So do I hate CF?  No. Yes. I don’t know…maybe. I sure feel that way sometimes. I hate the destruction and suffering that it brings. But I am eternally grateful that in the hands of my Savior, this horrible disease can be transformed into a pathway for blessing.  I’m not certain my life would be better without it.

I am fearfully and wonderfully made.