Nothing That Has Happened So Far Has Been Anything We Could Control

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Just when the end of cold and flu season was within sight. Just when the weather was finally starting to feel springlike. Just when we thought things were returning to normal.

Sick again.

We had spent a really fun, long weekend in Chicago a couple of weeks ago and Betsy held up great and we all had a blast. About a week after getting back, Lucas started coughing. Betsy and I were both trying to act unconcerned, but the truth is, we were. We were literally (because Lucas is still learning to cover his mouth when he coughs) and figuratively, holding our breaths, hoping that Betsy wouldn’t catch whatever bug that had befallen Lucas. And sure enough, by the weekend Betsy was down for the count. At first it was just a sore throat and sinus pressure. Then those initial symptoms gave way to respiratory difficulties. Betsy told me she noticed a change in her breathing.

Sigh.

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Spring, finally.

Of course that unleashed a whole wave of questions and concerns. Should we give Betsy’s body some time to fight off the virus on its own? When do we need call the doctor if at all? Would he want to prescribe antibiotics? Would he want Betsy to go on IV antibiotics (please no please no please no please no please no)? It’s a balancing act. For obvious reasons, we don’t want Betsy to take antibiotics haphazardly because we want her body to be responsive to them when she really needs them. On the other hand, we don’t want her to naively refrain from taking them if she really does need them, causing a minor infection to turn into something far worse.

In the end, she did call the doctor and he did prescribe a pretty lightweight oral antibiotic which he thinks will be enough to get Betsy back on her feet. She didn’t dodge the bullet completely but it could have been worse.

I nicked the title of this post from a song by Australian psych rockers Tame Impala (PSA: If you’ve never listened to them before, you should definitely check them out! My favorite album is Lonerism). I couldn’t think of a better way to sum up how I have been feeling about this latest bout with illness. We’ve been washing our hands, we’ve been trying to regulate Betsy’s activity, we’ve been making sure she has been getting as much sleep as possible and doing everything to minimize her exposure to the outside world, especially as she was coming off the steroids which we knew were probably suppressing her immune system. What else could we have done?

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Wild impala.

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Tame Impala.

One answer is nothing. Admittedly, it’s not one that I like. Probably the thing I struggle with the most is the feeling of helplessness. By nature I’m the sort of person that wants to try to prevent and protect. I wouldn’t say I’m paranoid (although Betsy might disagree) but I’m definitely über alert to any danger. When Lucas was learning to walk I remember carefully inspecting all of our furniture looking for dangerous corners that he might tumble into so that we could cover them with pads and cushions. I think subconsciously, I take a similar approach to Betsy’s health. Is there someone sniffling in the row behind us at church? Have any of her students been sick in the last month?

But alas, not everything can be prevented. And that leaves me feeling distressed and annoyed. I came across a benediction that appears at the end of 2 Thessalonians the other day:

Now may the LORD of peace himself give you peace at all times in every way.

I’ve been trying to keep this in mind. Because what I really need at times like this is peace. As much as I would like it to be otherwise, there are many things that are out of my control. There are things I can’t prevent. But I trust that Betsy’s health is in God’s hands. And knowing that gives me peace.

 

Steadfast

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This is my first blog post of 2016, so I’d like to say Happy New Year to all my readers! I love the new year. It feels like a fresh start even though it’s just another day in sequence. There are plenty of people who dislike New Year’s resolutions and even people to resolve to stop making them, but I like them. The cynics say that no one keeps them, that no one ever really changes, but I still think it’s great when people take a look at their lives, see areas they’d like to change, and try. Resolutions are hope–hope for a better year, hope for a better version of ourselves, hope to make progress as humans. And you know I’m all about hope.

My New Year’s resolutions are often similar.  The specifics change from year to year, but they revolve around spending more time on important things and less time on unimportant things. When I was younger, I had specific goals and expectations I would lay out for myself. As I’ve gotten older I’ve focused more on the spirit of the resolution rather than trying to meet some quota or follow a strict schedule, and that has helped me see more progress and made me less likely to abandon my efforts. I’ve also learned to set a small number of reasonable goals.

This year, I made some traditional resolutions. Then I was introduced to the notion of choosing a focus word for the calendar year. I first heard about focus words from my sister who learned about it during a spiritual retreat program she was completing. I later read about it again on a blog I follow called CF Wife. A focus word is one word or a phrase that you choose for the year and use as a theme rather making a resolution. It was perfect timing for me, because there was an idea I kept circling that didn’t lend itself to a traditional goal. The year 2015 was a difficult year for me. I weathered some bad illnesses, lost lung function, and experienced some ups, downs and disappointments. It was a year in which I often felt tempest-tossed, both in body and soul. As the year drew to an end, I felt a longing within myself to be more grounded–to be unwavering and sure no matter what came my way. I want to be hopeful, joyful, and have peace during the highs and especially during the lows.

From these musings, God whispered a word to me. The word is steadfast. That is my focus word for 2016. Steadfast means all those things I mentioned above–grounded, unwavering, and sure. One of my favorite Bible verses from Isaiah uses the word steadfast.

You will keep in perfect peace those whose minds are steadfast, because they trust in you. ~Isaiah 26:3 NIV

Another translation of the same verse provides what I think to be another excellent definition of the word. It reads:

You will keep her in perfect peace whose mind is stayed on you, because she trusts in you. ~Isaiah 26:3 NKJV

Steadfast–a mind and heart stayed, or fixed on God, unwavering because of a deep trust in Him. That is what I want for myself this year. That is what I’m asking for, that God will steady my heart and help me to trust Him.  That He will give me peace, hope, and joy no matter what comes. No matter how many lows, how many highs, and how much bouncing in between. No matter what victories or what disappointments. I want be steadfast in my belief that God holds me and my life securely in His loving hands, and that I can trust Him with the particulars.

This is my prayer for 2016:

Create in me a pure heart, O God, and renew a steadfast spirit within me. ~Psalm 51:10

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The God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. ~I Peter 5:10

Held

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There are some mornings when I wake up with a heavy heart. There is so much darkness and evil in our world. There are so many people with broken hearts, broken bodies, and broken dreams. There is so much violence–both in actions committed and in words spoken. I read about other CFers who are going through frightful, sometimes unexpected struggles and fear tugs at my heart. I feel an unnerving helplessness. There are things in my own life which feel undone and I worry I will never have the strength to see them through.

This morning as I was wrestling with these thoughts, a picture came to my mind. It was a moment caught by our photographer during a family photo session we had this fall.

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Held.

It was an ordinary moment…one that happens almost every day. My little boy needed the reassurance of my love and the comfort of my arms. The love I have for him as his mother cannot be expressed with mere words. I would do anything for him. The pain and hurts he experiences as well as the joys and triumphs surge through my heart as if they were my own.

I know that my Father in heaven loves me in this same way. My trials and triumphs are not unnoticed by him. He loves me even more completely than I can love my son. He is a God who sees and knows. He weeps at brokenness and violence and shattered dreams just as I do.

So on days like today, when I feel the weight of the world on my shoulders and tears sting the back of my eyes, I can only do what my child would do–run to the safety of His arms. There I find comfort, there I find peace, there I am fully loved and fully understood.

I am held.

Looking Up and Letting Go

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I’m happy to report that after some very challenging weeks (months, really), things are finally looking up!  I went to the doctor a week ago, fully expecting my breathing test score to be down even further. Even though I had been on IV antibiotics for more than two weeks, I was feeling awful, in fact worse than before I started the treatments. Doing the breathing test left me completely dizzy and exhausted and my lungs sounded terrible–raspy, congested and tight. So imagine my surprise when my FEV1 came back at 40, up 8 points from my previous 32!  I could scarcely believe it, but was thrilled! I felt a shred of hope after what has been a very scary several weeks.

My doctor was pleased with the gain.  He told me that I was one of a handful CF patients in their clinic who is experiencing the same type of exacerbation. He and his colleagues have concluded that the root problem is actually a virus. It is causing this inflammation which has been locking up congestion deep in the lungs.  The inability to clear the congestion and the resulting build up is what is causing the drop in lung function. This explains why the antibiotics, although helping, didn’t make a huge difference right away. They are serving to keep the colonized bacteria at bay and preventing a secondary infection, but the root problem is still viral. It was so good to hear that I wasn’t the only one with this issue. It’s not as though I’m happy others are struggling, but it is comforting to know there is a reason for these symptoms that I’ve been experiencing, and that’s it’s not just my body and my disease going haywire.

I am making gains now, although I still have a way to go to hit “normal.”  I suspect I won’t get there until I’m off the antibiotics and the steroids and can bank some deep, uninterrupted sleep. Tomorrow morning is my last dose and I’m so excited to be done and free from my line after 25 days. I have another appointment next week and I hope to see that FEV1 number jump a bit closer to my baseline.

These weeks have been very difficult for me physically, emotionally, and spiritually. This is the first time I’ve had a serious illness since Lucas was born, and boy, that certainly changed things. I could hear God telling me that He loved me, that I shouldn’t be afraid, and that I could trust Him. But I just couldn’t get my heart to accept those words.  I was bound so tightly by fear. I would wake up each morning with a heavy, anxious heart. I was so very afraid–afraid that I wouldn’t regain any lung function, afraid my health was slipping, afraid that I would no longer be able to be the mother I wanted to be.

I finally realized that in order to release those fears, I needed to also release the tight grip I have on my child. I want so badly to meet his every need myself, and to protect him from hurt, and to be present and attentive–now and in the future. These intense desires were feeding my fears as I lost the ability to do those things for a time. I had to allow others to care for him so I could get rest and sleep. I saw the strain my illness put on him as he cried that he missed me and just wanted me. I heard his concern as he asked if I was okay and if the sick was gone. I saw his sadness and heard his complaints and there was nothing I could do to fix it. I spent more time in bed or on the couch than I did at the park or playing with him on the floor. It was painful. But just as God holds me in His hand, so He also holds my child. He loves Lucas even more than I do, and He can meet Lucas’s every need. He will take care of Lucas. And no matter what my future holds, God will never leave him. It’s not easy for me to loosen my grip, but I need to trust God with Lucas as much as I need to trust Him with my health and my life. I’ve heard people say that being a parent is an exercise in letting go. I guess my lessons are starting early.

And I know in my heart that God is already redeeming this illness in Lucas’s life and using these struggles for good. That sweet little guy has grown these past weeks! It wasn’t easy. I saw his uncertainly and fear.  But I also saw him dig deep and be brave. By this third week he has accepted our current circumstances and has been cheerfully soaking up the love others are pouring out on him (and me).  He happily went here and there every morning this week with friends or family so I could go back to bed and get extra sleep. It was hard for me to let him go, but it was great to see him thriving even without me.

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Lucas excitedly waiting to be picked up for a Mommy-free adventure. Not shown: said (disheveled) mother counting the seconds until she could get back into bed.

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Waiting (patiently?) for his friends. (When did he get so big?!)

I’m thankful that the worst of this illness appears to be over and we are hopefully on our way back to our normal life. I am grateful for the lessons I’ve learned through this and for the growth I’ve seen in my boy. I’m thankful that God is patient with me and is using my challenges to teach me more about His love and His purposes, and to foster a deeper trust in Him. And I’m extra thankful that bright hope has again filled my heart.

Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:21-23 

Finding Rest

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The driving rain today sums up the past few weeks for me. They’ve been dark, they’ve been dreary, they’ve been messy and uncomfortable. Rays of sun have broken through here and there, but they have been few and fleeting.

I started IV antibiotics two weeks ago to address a plunge in my lung function which followed a difficult winter of weathering illness after illness. Being my first experience with IVs for cystic fibrosis, I wasn’t quite sure what to expect, but I surely didn’t expect what came.  Instead of feeling relief and healing, I experienced a steady worsening of symptoms.  Instead of renewed health and strength, I felt myself plunging deeper into what feels like an abyss–sleepless nights, a tight, raspy cough, unsightly congestion, exhaustion, and with it all, a profound feeling of defeat.

This is not the first time I’ve had a health crisis, and this current struggle does not come close to the magnitude of a few emergency situations I’ve lived through.  But to the best of my recollection, this is the first time I’ve struggled so intensely to pull myself out of such strong feelings of fear, worry, and disappointment.

A few nights ago, Lucas could not drop off to sleep. We were laying together in his bed, but rather than settling down, he became increasingly restless. I finally sat up and asked him if he was alright. He said no. I asked if his stomach hurt and he pulled up his shirt and pointed to a spot he said was hurting. I pulled him into my arms and rocked him as best I could on the bed, and we prayed that Jesus would ease his discomfort, anxiety, or whatever was causing sleep to be so elusive.

After our prayer, I leaned against his head-board and held him close. He relaxed immediately, his full weight pressing into me as he let go of his tension and worry. It still took sometime before his breathing became even and he dropped off to sleep, but the peace was immediate. He found the rest he needed wrapped tightly in my arms.

In this current health struggle, I feel much like Lucas did that night. I’m thrashing around, trying to get comfortable, trying to find a place to rest, but it is not coming. My mind is swirling with questions and fears and confusion. I don’t understand what is happening to me, why my lung function dropped so suddenly, why the treatments aren’t yet bringing noticeable results, why the bottom fell out after I had been enjoying a long streak of well-managed health. My very ability to live the life I’ve been given feels questionable and normal seems so far off.

I felt God speaking to me that night, as I was holding my son. He told me that I too, can find rest in His embrace. That I, too, am loved with a love fiercer and stronger than I could ever put into words. That I too, can trust Him, my heavenly Father, who is for me, not against me. I hear Him saying to me, “Do not be afraid.” But unlike Lucas, I have had much difficulty in accepting this love, this rest, these assurances in this struggle.  My heart feels locked up tight. I am restless. I am full of doubt. I am afraid.

In troubled times, there is no better place to go than to the Psalms. Pretty much every human emotion is chronicled there as the writers cry out to God in the midst of whatever life throws their way. Psalm 62 came to my mind today. In this psalm, the writer, David, talks of being assaulted, thrown down, and toppled, all words that I can relate to right now. In the midst of whatever he was battling, David says,

Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.” (verses 5-8)

Do you notice the active words in these verses?  Find rest. Trust. Pour out your hearts. That’s what I need to do right now. So although my heart is lagging behind, I am trying. I’m seeking God’s rest. I’m putting my trust in Him. I certainly am pouring out my heart. And my God is faithful. I know He will get me there. He is my refuge.

Finding rest.

“Yes my soul, find rest.”

Resolved

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Lucas, checking out the new 2015 calendar.

I love the new year.  It feels like a fresh start every time the old calendar comes down and a glossy new one graces the wall. The new year seems to hold so much possibility, so much capacity for positive change, for good things, for blessings from the Lord. The holidays are over, it’s time to get back into our routine and back to “normal” life.  It’s time to resolve to do better in some areas and feel grateful for the progress we’ve made in others.

On New Year’s Day this year I read a wonderful passage from Deutoronomy 31 (verse 8).  It says, “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”  This passage gives me hope and peace as I stand here at the start of the year, looking toward the future, wondering what the next months will hold.  There may be wonderful gifts or frightful challenges.  I don’t know yet.  But one thing I can count on is that on this journey, the Lord himself will be my companion and my guide.

I have found that having a progressive disease like cystic fibrosis invites lots of worry. The uncertainties of the future can be so unnerving.  I go along feeling fairly peaceful and then an illness knocks me off my feet and shatters any feelings of security.  The worries start flooding in.  What if I don’t get all the way better?  What if I sustain irreversible damage?  What if I lose lung function?  What if, what if, what if?

I know that worrying is a giant waste of time.  After all, it accomplishes nothing productive.  It does nothing to ease the pain of the anticipated event if it does occur. And in the meantime it steals away the peace and joy in my heart and replaces contentment with anxiety. Although I know this to be true, I still struggle with it.  I suppose it comes from wishing to exert some control over my life, especially in areas where I feel the most vulnerable.

Corrie ten Boom said, “Worrying is carrying tomorrow’s load with today’s strength–carrying two days at once.  It is moving into tomorrow ahead of time.  Worrying does not empty tomorrow of its sorrow; it empties today of its strength.” When I imagine some difficulty that might befall me, I wonder how I could ever make it through that challenge. What I worry about seems heartbreaking and impossible, and you know what, it is.  It is impossible because I haven’t been armed with God’s grace and strength for that challenge yet. When the hard times come, I may have sorrow, but I will also have strength, I will have courage, and I will be given all I need. Then. When I need it. Not now.

So this year I resolve to use today’s strength for today’s challenges and not to waste it on worry. I resolve to push aside the fear and discouragement that creep in when things aren’t going as well as I’d like. Chances are, there will be some hard days in 2015 and some days where my heart is filled with inexpressible joy.  The joy and the hardship may even coincide. I don’t know what lies ahead–what smooth or rocky paths my feet will tread this year.  But with Jesus as my guide, I can let go of my worries and instead hold tightly to Him.