Waging War

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It’s time for a health update and this is not the one I thought I would be giving! I had a really great winter, getting only two viruses that I was able to recover from without excessive difficulty. I was so excited as the calendar flipped from March to April, and as we sailed through May I thought for sure I was in the clear. I was dreaming of reaching new heights and regaining some lung function this summer after not battling with a myriad of bugs all winter.

A few weeks ago, however, I started to notice increased shortness of breath. I was keeping up with all my normal activities, but suddenly exercise, yard work, chasing Lucas around, and other things of that nature became more difficult. My seasonal allergies are bad at this time of year so I assumed those allergies were irritating my asthma and I wasn’t too concerned. I headed to a routine pulmonary appointment the last week of May and was surprised when my breathing test revealed that my lung function had dropped from 38% to 34%.

I had no other signs of illness or infection, so my doctor put me on five days of steroids hoping that would reduce the apparent inflammation and get me back on track. I experienced a little reprieve while on the steroids but still wasn’t feeling right, so I contacted him again last week. He put me back on the steroids and added oral antibiotics to address any infection that might be locked up and hiding in my lungs. On Friday I went in for a check and was dismayed to see that my lung function, rather than rebounding, had dropped an additional four points to 30%.

Cystic fibrosis can be puzzling. Most of the time when my lung function drops, it’s because I’m sick and I know it. Usually it starts with a virus and moves to a CF-related secondary infection. My lungs fill with mucus, my airways swell, I struggle to breathe, and I can’t wait to get relief. But this time, I feel pretty decent. I do have the shortness of breath that I mentioned earlier and my lungs have been achy, but overall I have been feeling fine and handling all my regular activities. There was nothing obvious to account for this big drop and that makes it even more unnerving.

My doctor explained that although I wasn’t exhibiting any classic signs of infection, infection is still the number one cause of a drop in lung function. The fact that I wasn’t responding to steroids probably means that although my asthma is always a component of my struggles, it wasn’t the main player in this situation. My doctor ordered a chest x-ray to rule out anything else unexpected, but that came back clear. So we have circled back to the notion of an infection.  This one is hidden, yet waging war on my lungs all the same.

To quote Farmer Boggis, “Dang and blast!” Dang and blast and a lot of other emotions too. A kind of numbness settled in at first. I just couldn’t understand it. Next, frustration. Moments like this shatter any fleeting feeling of security I may dare to believe I have. Getting through the winter unscathed was such a victory–a victory I was reveling in and so grateful for. Yet here I am with my lung function lower than it has ever been before. After a bit the frustration moved aside and the grief set in–waves of sadness swelling up and washing over me as the fears gripped my heart. My lungs are functioning at only 30%. It’s so scary.

Times like this always bring emotional struggle. It’s never just a physical battle. It’s necessary to experience the disappointment, the frustration, and the sadness and face the fears. The emotions never fit into a neat little box. There is no scheduling myself 36 hours to get over it. Friday night was rough but Saturday I felt better. Sunday I woke up in the wee hours of the morning feeling heart-broken. But in the midst of the sadness and frustration I knew it was time to get to work. The tables need to be turned. It is time to wage war against this infection.

This battle has two fronts: the physical and the emotional. Waging war means doing everything in my power. Jaime and I started doing manual percussion on my chest in addition to my normal airway clearance. Monday afternoon I headed to the hospital to get a PICC line placed and I started an IV antibiotic on Tuesday morning. My buddy the treadmill and I have been spending time together each day as currently, brisk walking has been the only thing that makes me cough mucus out.

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Attempting to show this infection who’s boss!

To balance off the treadmill work, I’ve been resting more in the afternoons. These afternoon rests are made possible by the arrival of my sister Julie from Tennessee! She got here Wednesday and will be staying through Monday to help me with chores, play with Lucas, give me moral support, and make a bad situation a heck of a lot better. She’s helping me with the physical aspect of this war but also helping all of us get through it emotionally.

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Aunt Julie is an awesome playmate and Lucas is thanking her with hundreds of hugs and kisses.

Fighting on the emotional front means a few things for me. First of all, I am committed to continue on with as much of my life and daily routines as possible. The PICC line is so great that way. There are some restrictions, but nothing too limiting. I’ve been spending time in my garden. Nature feeds my soul. I’ve been picking Lucas up from school and running an errand with him here and there.

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Lucas, holding the door for his class at pick up!

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A quick stop for some groceries and an orange balloon.

We’ve been keeping up with his school work.

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A special secret school project to thank his teacher.

I’ve continued my normal work schedule.

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Tutoring with my PICC.

I may have to cut back on some of these activities depending on how the next weeks play out, but as long as I have the strength, I want to continue on.

Most importantly, I’m trying to keep my eyes off my circumstances and on my Creator. He is the one who calms my fears and speaks peace and comfort to my heart. While I was on the treadmill the other day, a song came on that I haven’t heard for quite some time. The words were fitting. They go like this:

I will lift my eyes to the Maker
of the mountains I can’t climb
I will lift my eyes to the Calmer
of the oceans raging wild
I will lift my eyes to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You

From “I Will Lift My Eyes” by Bebo Norman

These troubling circumstances are a lot to handle. These mountains are too high for me and these oceans too rough. The hurt and fear are at times more than I can bear. But none of it is too much for God, and I know my life is safe in His hands. He holds me and watches over my life. And best of all, He has already won the war.

CF Awareness: Answering Your Questions

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Thanks to everyone who submitted questions! You really got me thinking!

If you could give up one of your treatments/therapies/CF-related routines for a week, which one would it be?

I can only choose one? 😉 The treatment that I struggle with most is the breathing treatment and respiratory therapy that I do before bed, so I’d give that up for a week if I could do it without consequences. My morning treatment is actually harder because I’m far more congested first thing in the morning, but that one is so necessary for me to function that I never hesitate to do it. The instant gratification of being able to breathe and walk around without massive coughing fits is pretty motivating.

The evening treatment, on the other hand, is such a drag. I work four evenings during the week and my last students leave at either 8:30 or 9:00 pm. After that I’m pretty beat and I just want to relax, watch TV, spend time with Jaime, or go to bed. I hate having to initiate coughing and get my lungs all hot and bothered. Sometimes if I get coughing too hard, it’s difficult to stop and get to sleep.

If I miss the evening treatment, I still sleep just as well. But if I skip it, I have a harder time the next morning with more congestion and extra coughing. So there is a reward for doing it, but it’s not until the next morning.  Honestly, sometimes I’m just too tired to care that I’m going to pay for it the next day.

Are there are new CF medications or treatments that might help your lung function?

I think a little background information is helpful in answering this question. As far as medications and treatments for CF, there are five main categories. The great news is that thanks to the Cystic Fibrosis Foundation, all five categories are under research and new drugs and therapies are being tested and developed!

The first category is nutritional. I currently take digestive enzymes and CF-tailored vitamins to meet my nutritional needs. Because I am stable in this area, I don’t think any of the medications under development would be of great help to me. The next area is anti-infectives which include antibiotics. Most of the research is focusing on inhaled antibiotics which go straight to the lungs. Because of my significant asthma component, I cannot tolerate any of the inhaled antibiotics that are currently available, so I don’t have much hope that new ones will help me either.

The third category is anti-inflammatory drugs. I am particularly excited about this area of research because the asthma component of my CF causes a great deal of lung inflammation. There are currently five medications in the drug development pipeline. I truly hope one of them is a winner and will help me! The fourth category is mucus clearance which includes medications to thin the mucus and devices to help us loosen the congestion and cough it out. I currently inhale saline solution and a mucus thinner and blow in a device that vibrates my lungs. My mucus is still quite thick, however, so I’m excited that there are five drugs in the development pipeline and hope that one will turn out to be more effective than what I currently take.

The fifth and most exciting category is drugs that restore CFTR function. The symptoms of CF are caused by a faulty protein which is known at the CF Transmembrane Conductance Regulator (CFTR).  These drugs are designed to correct the defective protein. The defective protein inhibits sodium and chloride from moving in out and of the cells properly. There are many CF mutations and different types of mutations cause the protein to malfunction in different ways. There are currently two medications available to patients that help fix CFTR function. One medication has been particularly effective and patients who can take it have seen some significant gains in lung function and overall health. The second one has had more modest results but has still been very helpful to many patients. Due to my specific mutations, neither drug is effective for me (or available to me). I have one copy of the most common CF mutation and one rare mutation. Because I do have one common mutation there is still a good chance that there may soon be a drug in this category that will help me. I’m hoping!

If this topic sparked your interest, check out the Cystic Fibrosis Foundation’s Drug Development Pipeline for more information.

Would you ever consider a lung transplant?

The short answer is yes, I would consider it. But at this time I don’t feel certain that I would decide to go for it. My CF care team has never broached the subject with me because thankfully, at this time, I am functioning well even with diseased lungs. However, I have read some about the process and “know” people through online support groups who have gone through transplantation.

My understanding is that survival rates for patients who receive lung transplants are rising, but lungs are still a difficult organ to transplant. According to the Cystic Fibrosis Foundation, 80% of patients who receive a lung transplant are still alive after one year, and about 50% are still alive after five years.  The wonderful thing about transplant is that the new lungs will never have cystic fibrosis! However the rest of the body still does, so lung transplants are not cures. Also, transplantation can cause other problems. I’ve heard people say that when you have a transplant you trade one set of issues for another. First off, transplant surgery is a major operation and there are inherent risks there. As someone who has had two major surgeries and three minor ones, the thought of the surgery itself is more than a little frightening. Patients require 24-hour-a-day care for at least a month after the procedure and most centers require at least three family members or friends to sign up to be caretakers. It is also very expensive. It would be a lot to put my family through.

In addition, patients are always at risk for rejection, which is where the body attacks the new lungs as a foreign invader. Severe rejection can lead to lung failure. Because of this, transplant patients must take many strong medications to fight against rejection. Those medications can cause other complications such as cancer, recurrent infections, kidney infection, or diabetes.

I feel there are emotional implications as well. I haven’t studied this or talked to other transplant patients about it, but the thought of receiving the lungs of someone who has died a tragic death is a little hard for me. I wouldn’t feel right about praying for new lungs or hoping to get the transplant call just knowing that what I’m ultimately waiting for is someone’s untimely demise.  That said, I can imagine that the gift of organ donation might be a positive thing for the grieving family, and that blessing someone else with life from that tragedy might be a healing experience. I haven’t worked it all out in my mind, but these are my preliminary thoughts.

I’ve just listed a lot of negatives about lung transplantation, but the whole reason I would consider it is that when it is successful, it can add wonderful, healthy years to people’s lives! What a gift that would be.  Some lung transplant recipients go on to become athletes or climb mountains or do all sorts of things they could never even attempt before. That sounds pretty great to me. Also, there comes a point in most CF patient’s lives where transplant is the only remaining option for treatment. If that time comes for me, I feel confident that God will show me the path to take.

What’s one really hard thing about having CF that most people don’t know about?

Great question and a hard one!! I can’t decide between two things so I’m going to cheat and write about both. The first may better answer the “most people don’t know about” part of the question, and the second better answers the “really hard thing” part.

I hesitated to write about this at first because it’s kind of dark and depressing. But I’m trying to raise CF awareness, so here’s the honest truth. The first thing that came to mind is moments of panic. I have some pretty specific fearful thoughts that come into my mind. I’m not talking about the more obvious fears of an uncertain future or fears of getting sick. These are different. Sometimes I imagine that I will need to flee from something or someone and I can’t get away because I can’t breathe well enough to run fast.  I wonder what would happen if I was kidnapped or ended up imprisoned for some reason. How long would it take me to die a miserable death without access to my medications?

I have fears of being overpowered. I’m afraid of suffocating or being stuck in tight places. I’m scared of being buried alive in sand or snow. I can hardly stand to hang out in a blanket fort with Lucas or hide under the covers with him because after a few minutes, I feel smothered. I even hate to wear protective face masks because any sort of breathing obstruction makes me nervous and uncomfortable. I’m afraid I’ll need to rescue Lucas from something horrible and I won’t get to him in time. Now that my lung function is reduced, I don’t like having my face and head under water. I’m afraid of drowning.

When these thoughts or fears come to me during the day, it’s not hard for me to push them away and think about other things. But they also come in vivid dreams, and those can be downright terrifying. I have a recurring dream where I am unable to move, chained by some invisible force. There have been a few times in my life where I have been sick enough that I thought I was going to die for lack of breath during or after a bad coughing fit. It’s an awful feeling and I started having these fears and dreams after those experiences.

Even though I hate that part of the disease, it’s not as hard as other aspects because it’s not a constant problem. Which leads me to my second answer. I’m not sure people understand how often those of us with cystic fibrosis deal with change and loss, and how lonely that can make us feel. Because CF is a progressive disease, symptoms get worse over time. It may be obvious that we have to deal with more sick days, more coughing, more infections, and reduced lung function, but the resulting losses are more subtle. The sicker we become, the less we can do, and over time it feels like we are losing bits and pieces of ourselves along the way.

There are a whole host of things I did in my younger, healthier years that I can’t even attempt now. Some of them I have a wistful longing for–like being able to run the 8-mile race around the perimeter of Mackinac Island, or run down the side of a sand dune.  Some of them are simple and seemingly trivial…like helping someone move furniture. But both were a part of my identity that I lost. Betsy the runner is gone. Betsy, that girl who’s surprisingly strong for her size and who will pitch in and help with whatever–the one who enjoys a physical challenge–she’s gone too. That hurts. It’s really hard. Sometimes these changes happen slowly over time, and sometimes they come fast and furiously. At times I haven’t even had time to accept and adjust to my new limitations before I’m faced with a whole set to get used to.

These losses happen to everyone as they age, but when you have a disease like CF, it begins far too early and only to you. Your peers aren’t going through it. When you’re facing these things together, there’s a camaraderie, maybe even humor to be found in the situation. But it’s just painful when you’re experiencing losses alone. Because of the dangers of sharing germs, cystic fibrosis patients are not permitted to mingle. There are no face to face meetings or support groups.  Any support we seek has to be online. The online groups are wonderful, but it’s not the same as having a friend to share life with.  It’s different to chat online than to talk face to face over coffee, or laugh (and therefore cough) during a playdate at the park with our kids.  Sometimes I think it would feel really good just to get a hug from someone who really understands. I am blessed with so many wonderful, true friends and a family that loves me and helps me to bear my burdens, but at times I still feel alone in my world of disease.

How is your Fitbit streak going?

It’s going great! Today will be my 300th day in a row of 10,000 steps or more (assuming I finish this post and get off the couch). I’m pretty proud of that! It has certainly taken resolve on my part, but I’ve found that it’s not that hard as long as I plan activity into every day. If I don’t have a dedicated portion of the day to go for a walk or exercise, I make sure to spend 10 minutes here and there walking around the dining room table or the playroom. If I haven’t gotten my steps before I start tutoring, I pace back and forth in my office between students or if they’re working on something independently. Those steps really add up and it’s heart healthy and lung healthy just to move!
This long streak was only possible because I had a very good winter health-wise. I did get sick twice, but both illnesses were (relatively) mild and I was able to shuffle around the table even on the worst days. I find that if I’m having a harder day health-wise, a reasonable amount of movement goes a long way in making me feel better and creating energy. This exercise goal has improved my stamina overall and I’m thankful for that! I know I’ll break the streak eventually, but hopefully not anytime soon. I’d love to reach a year!
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Thanks for sticking with me through this long post! If you didn’t get a chance to ask your question, or if my answers raised more questions, feel free to submit one now in the comment section or by email (bvbrighthope@gmail.com). I’d be happy to write another post or answer you directly. Thanks for reading!

CF awareness

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.

 

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.”