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June 30, 1978.

Jimmy Carter was president and Grease was #1 at the box office. Chesapeake by James Michener was atop the list of New York Times bestsellers and “Shadow Dancing” by Andy Gibb was probably playing on the radio. Fans of the San Francisco Giants watched Willie McCovey become the 12th player in Major League Baseball history to hit 500 home runs and in Ann Arbor, Michigan a baby girl was born to Ron and Mary Waterloo. Their sixth daughter!

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June 30, 1978. Baby Betsy.

This past Saturday, we celebrated Betsy’s 40th birthday. It was a great opportunity to gather together with many of the people that love her the most. People have mixed feelings about turning forty. I know, I do! This October, I will…cease to be in my 30s (see, I can’t even say it!) and the pendulum of emotions swings back and forth on a daily basis. On the plus side, I still have my hair. But it has become a losing battle trying to pluck all of the grey out of my disheveled mop. I can afford to buy the really nice soccer shoes I used to dream about but often I can barely walk the day after I play in them.

I could go on.

For Betsy, turning forty feels different. When Betsy was born in 1978, the average life expectancy for someone diagnosed with cystic fibrosis was around twenty years. To have made it to forty and to be thriving is an unqualified victory. If Betsy had any grey hair (she doesn’t), it would be a badge of honor. Betsy has been through a lot in her forty years. There have been more than a few health crises along the way. Life now looks a lot different than it did twenty years ago but Betsy has not given in to discouragement. Betsy’s day-to-day existence is not without its difficulties but it is mostly full of joy and laughter and hope.

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1998. Bae (I think that’s what the kids are saying these days) home from college.

And we are hopeful! Betsy is feeling as good if not better than she has at many points in the last ten years. She is still chasing after our six and a half year old son, Lucas. Betsy is a great mom – always at his soccer games and school events. Lucas adores her! She has resumed a little running after some breathing and back difficulties forced her to take an unwanted hiatus. Her time for the mile isn’t quite what it was when she was tearing up the Mackinac Island Eight Mile Run back in college but she is running! She is still operating a successful tutoring business and making a difference in the lives of her students. She even manages to still have the time (and patience!) to help me find all of the things that I misplace.

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Betsy and her favorite boy (yes, I’ve been displaced 😉 )

There are a lot of exciting medical advancements too. The Cystic Fibrosis Foundation is constantly pushing the boundaries for new treatments and medications. We participated in the Great Strides fundraising campaign on a rainy Saturday this past spring. Our team amassed over $5000 in donations and nationwide nearly $30 million was raised, all of which goes towards funding cystic fibrosis research. Betsy’s pulmonary specialist is hopeful that maybe even within the next two years, there will be a new medication targeting the underlying cause of cystic fibrosis for people with Betsy’s particular gene mutations. A company called Planetary Biosciences has been working on new dietary supplements that have made a huge difference for Betsy and others. We feel optimistic!

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Team #Breathe4Betsy

To see Betsy at age forty is a testament to God’s faithfulness. It’s a testament to Betsy’s determination and perseverance. And it’s a testament to the love and support that we have received from our family and friends. Psalm 139 says “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” We are thankful for each one of those days! We don’t know how many there will be (none of us do!) but I know Betsy will live them to the fullest, surrounded by love.

Just like Saturday. Happy Birthday, Betsy!

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June 30, 2018. Betsy & her sisters.

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Four Years!

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An old picture popped up on Facebook today, reminding me that I started this blog exactly four years ago! Jaime had surprised Lucas and me by coming home from work early. He and Lucas set off for an adventure at the Hands On Museum so I could have a free afternoon. I had been considering blogging for several months, but hadn’t quite mustered up the courage to get started. Lucas was two at the time, so free hours were hard to come by.  I decided I’d better seize the opportunity and I got the blog up and running while the boys were gone. Jaime joined me as a writer about 10 months after I started the blog and combined we’ve written 124 posts to date.

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Heading out to catch the bus to the museum on April 25, 2014.

This morning Jaime and I had a little adventure. Today was Lucas’s star student day at school.  Lucas made a poster this weekend sharing some things about himself, and Jaime and I were invited in to see him present his poster and to tell the class about a family tradition we have.

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Lucas’s poster.

Lucas, preferring to stay out of the spotlight, made his presentation as brief as possible 😉 . It was still lots of fun to see!

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Jaime and I shared about how soccer is a big part of our family, starting with Jaime’s dad growing up in Peru, and trickling down through Jaime to Lucas. After our presentation, we headed to one of our favorite local joints so I could get a coffee and Jaime could have lunch.  When you eat breakfast at 10:30, lunch at 11:30 just doesn’t make sense, but as you know, I never say no to coffee!

 

Right now, I’m sitting here looking out the window, in the same spot where I started this blog four years ago. That day I got to see Jaime and Lucas out there hand in hand.  Today it’s the FedEx guy and some well-fed squirrels. I have more free hours nowadays which is nice, but we have far less time for adventures with Lucas which we greatly miss. My health has declined on paper, yet my life is still just as full and happy as it was four years ago. Some things are easier, like maintaining a heathy body weight, and some things are harder, like exercising. There have been ups and downs along the way, but through it all, God has been faithful.  My heart is still filled with the bright hope I felt on that first day which led to the title of this blog.

Thank you for following along with me these four years! I’ve found healing and hope in expressing my thoughts during the challenging times.  I’ve found joy in sharing the triumphs and blessings as well as the everyday experiences that make up my life. I’ve found community as readers have reached out with love and encouragement and shared their own experiences. Thank you for allowing me to share my life with you, and for sharing yours with me.

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Then…

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And now.

First photo by Wendy Martin Photography, second by Jess Marie Photography.

 

Coffee & Change

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I love coffee. It’s just so good! I’m one of those people who starts looking forward to my morning cup when I’m heading to bed the night before. I drink my coffee after my routine of breathing treatments and the physical and respiratory therapy I have to do to keep my CF-self functioning. It feels like a reward for getting through the less pleasant parts of the morning.

I love everything about coffee–the smell, the taste, the warmth, and the deep, rich color. I even like the sounds my coffee pot makes while the coffee is brewing. I find them oddly comforting. Those of you who love coffee are nodding your head and saying, “Mmm-hmmm,” right now, aren’t you? And the rest of you probably think I’m a little crazy. 🙂

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I love coffee memes!

This morning as I was drinking my strong, black brew, I was thinking about how coffee never changes. It’s one of those things I can count on each day. It’s a homey comfort and a fixed part my morning. It’s nice to have simple pleasures like coffee to ground me (no pun intended 😉 ).

In another area of my life, I’m in a period of change. Lucas is off to school full-time now, and beyond that, he’s becoming increasingly independent even when he is home. He demanded so much of my time and attention as a baby, toddler, and preschooler. He was a child who needed a lot of closeness and a great deal of attention to feel safe and comfortable in the world. Sometimes it worried me and sometimes Jaime and I both grew weary of it, but we felt strongly that his needs were legitimate and we should do our best to meet them. For five years, taking care of Lucas consumed a great deal of my time and energy. We learned early on with Lucas that developmentally, he did things in his own time. He didn’t always follow the same trajectory as other kids, but once he was ready for a particular milestone, it was as if a switch would flip, and all of a sudden he would be there.

This fall, the independence switch flipped. Suddenly he was comfortable (enough) in big, noisy groups. He was able to handle the chaos of a crowded school. He was happy to play independently for long stretches without having me within his sight. I was so busy with various things this fall that I didn’t feel the full impact of these changes, but I’m feeling them now. With the formidable germs that are on the loose this season, I’ve been keeping close to home, and no matter how many tasks I busy myself with, I’m feeling the emptiness of the house in a new way.

I was noticing last night that sometimes Lucas resists changes, too. Our treadmill is broken and Jaime and I were discussing what we might do if it can’t be fixed. Lucas told us that he was sad to think that we might have to get a different one, and hoped we could find the exact same one because he loves it so much. (That makes one of us that loves the treadmill!) It made me smile. I mean, Lucas obviously never uses it, but somehow he feels attached to it and doesn’t want to see it go. Maybe all those hours he spent down there in the basement with me while I walked or jogged on it are stuck in his memory. Maybe part of him doesn’t want to see those days over and done with either.

It’s hard to let go of the past sometimes. I longed for more freedom in the most intense years of Lucas’s early life, but now it almost feels as though I have too much. I’m not quite sure where to go from here. The abruptness of the change has left me feeling a little lost.

It’s comforting to know that God’s promises never change. Even as I’m adjusting to a different set of circumstances, I know that God has a purpose and a plan for me. James 1:17 says, “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” We put the first part of that verse on Lucas’s birth announcement.

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Lucas was and is God’s perfect gift to us, and whatever God has in mind for me now that Lucas’s demands are lessening, that will be a perfect gift too. My job is to continue to trust God in the face of these changes. It doesn’t take me long to get anxious and fearful once I start trying to figure out my future. Peace comes from leaving it in God’s hands and knowing that he will provide for me no matter what comes, or doesn’t come. He will never leave me, and he will give strength for each new task. His plans are for good and not for evil, and he has promised me a hope and a future. Those wonderful promises are even more comforting than my morning coffee. 🙂

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photo by Jess Marie Photography.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~Romans 15:13

 

Odds & Ends & an Update

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Last month passed quickly, and without any posts from me! I thought that once Lucas was in school all day I’d be sitting on the couch twiddling my thumbs, but somehow that has not been the case. The days have flown by with almost no couch-sitting. I am settling into my new routine. I have a new work schedule which I’m getting used to. I definitely have more kid-free time than I have had for the past six years, but between physical therapy appointments for my back, other health maintenance activities and appointments, work, and running the household, I’ve not been bored. I’ve enjoyed finishing a few projects that have been half-done since Lucas was born, like his baby book! I’m sorry to say he will never know certain pieces of information (like when his last two molars came in) due to my negligence in recording the information at the time, but I’m pretty sure he’ll continue to live and thrive not knowing.  Thankfully!

One lesson I’m learning in these first weeks of having more time is that my productivity addiction is alive and well. I have been unable to be super productive since Lucas was born–in part because of the demands of caring for a young child, and in part because of the progression of my disease and the resulting loss of energy. I am one of those people who tends to put productivity on a pedestal, perhaps because deep down, my self-worth is too wrapped up in what I can or can’t do.  Clearly it’s something I need to continue to work on. There have been days recently when rather than relaxing, resting or enjoying some quiet, I’m wondering what else I can get crossed off my list. It feels good to get to the end of the day and be able to point to ten things that I accomplished. But just because I can get more things done daily, doesn’t mean I should wear myself out doing so. Being more restful affords me energy and an uncluttered mind to be fully present for the limited time I get to spend with Lucas once he gets home. Note to self: that is more important than any number of completed tasks. What can I say, I’m a work in progress!

I have been spending some time exercising and getting steps each day, but I did break my 10,000 or more steps a day Fitbit streak in early September. The streak lasted for 410 days, so it was a little sad to let it go, but it was the right choice. I broke it on Labor Day weekend. We were with my family for a reunion and I simply didn’t have the energy for both our planned activites and my 10,000 steps. When I mentioned to my dad that I would be breaking my streak, he reminded me that these goals that we set for ourselves only have value as long as they are serving us. The Fitbit streak did serve for me for a while! It helped me to become more active and build stamina. It kept me moving (and therefore healthier) during some emotinally challenging months. However, had I forced myself to get 10,000 steps that day, I would have been harming myself just to uphold the streak. That, my dad said, is serving the goal, and in doing that, it loses its value. Wise words, don’t you think? I don’t need to be a slave my goals. With that in mind, it was much easier to let it go.

Last week I headed back to the CF clinic for my three-month check up. After a rough summer, I was pretty nervous to see where my lung function had landed. It was 35%. That was definitely disappointing as I hoped to at least get back to 38% after all the treatments and therapies I went through this summer, but I wasn’t exactly surprised. In spite of that 35%, I have been feeling more stable this month and am hoping that there is still some healing taking place that will allow me to regain what has been lost. The good news is that my oxygen saturation was 99%, my heart rate and blood pressure were normal (in spite of doctor’s-office-induced anxiety!) and all other aspects of the exam were good too.  In other words, my body is doing a great job of coping with the low lung function. I’m exceedingly grateful for that!

Lucas and Jaime are doing well. I’ll write a separate post about Kindergarten soon, but for now I’ll tell you that Lucas is doing great handling the long day and he loves his classmates and his new school. We are so proud of him! He has enough energy left over to play soccer, this season for a team comprised of kindergarteners and young fives from his school and coached by the best coach in the world (Jaime). 🙂 I just love watching those two together on the field and it’s fun to see how much confidence and skill Lucas has gained since the spring. My boy is growing up!

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Fighting for the ball!

At practice the other day, Lucas came to the sideline where I was watching and told me he was going to go back out on the field and score a goal, just for me. And he did! He was so excited and I felt honored. He’s been growing and changing so much lately and is relying on me less and less. His sweet words and actions sure help as I’m adjusting to these changes.

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Gooooooooooal!

All in all we are doing well! Life has its challenges but we are experiencing many wonderful blessings too. And there are always fresh reasons to hope.

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

 

Sheri’s Answers

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A few weeks ago, Jaime, Lucas and I left for our annual beach weekend in western Michigan. We started this tradition when Lucas was three and now it’s something we all look forward to. We’re fortunate that my parents live just a little more than a half hour from Lake Michigan so we have the most wonderful place to stay!

This year we left in the early afternoon on Friday and drove straight to the beach. I figured we would have a few hours of sunlight left to enjoy the sand and watch the waves. It had been cold and windy earlier in the day so we knew we wouldn’t be able to swim but the air was fresh and the water and sky were so beautiful.

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It was only a short time before the park emptied out, and finally, we were the only three left on the beach. “Mommy, I just love watching the waves,” Lucas told me as he snuggled on my lap. Me too. It was wonderful.

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As I gazed at the expanse of the lake, it struck me how peaceful it was on the beach. It wasn’t quiet–the waves were choppy and rough and they crashed forcefully onto the shore. Seagulls were squawking and scuffling.  But still it was peaceful, natural, lovely. A gentle breeze danced around us and I found myself breathing deeply of air that felt clean and pure. I could practically feel my heart disarm, setting aside its indignant complaints and surrendering to God’s peace. Peace amidst the turbulence.

The words of the old hymn, Be Still My Soul, came into my mind, and I was transported back, again, to the summer when Sheri was dying. That hymn was meaningful to our family around that time. I quoted from it in a letter I wrote to Sheri just before she died. I posted it on my refrigerator as a way to be strengthened in my grief. My sister Julie wrote a beautiful piece incorporating its words on the first anniversary of Sheri’s death. Sheri died on September 4, 2004–thirteen years ago, today. It’s so hard to believe she’s been gone that long. I miss her so much.

I think of Sheri all the time, perhaps even more now that I find myself wrestling so much with the effects of this disease. I often wonder what advice she might have for me. Her faith in God sustained her, this I know. I saw it with my own eyes. But would she have specific suggestions for me? Would she attempt to answer the unanswerable questions? She fought through a seemingly endless string of challenges in her life without bitterness, and left a mark on this world that no one who knew her would deny. She was so faithful and so incredibly strong. But I know it was hard. She told me it was hard and I saw her struggle. I imagine that sometimes, when the house was quiet and the night was dark, she too felt overwhelmed by the burden of the fight and surrendered to the tears. Knowing that makes me feel close to her, even though 13 years have passed since I’ve talked to her and touched her.  Sometimes I just go ahead and ask her the questions. I don’t know if she can hear me, and I know for sure I won’t hear an audible reply, but sometimes just giving voice to them brings me comfort.

Sheri trusted God. She had hope, she had confidence in His goodness and love, and she knew God was in control. She knew He would give her the strength she needed to live and love fully until the day He took her home. And He did. There were good days, great days! Days filled with joy and hope and love. She touched so many lives and accomplished so much in her 35+ years here on earth. There were bad days full of hospitals and doctors, medicines, loss, and pain. Some days were downright ugly and filled with darkness and despair. But the beauty of her spirit is what we remember most of all–how hard she fought, how victorious she was, how strong, how loving, how generous. We remember those things because she refused to be defined by the disease that plagued her. At times cystic fibrosis ruled her body but she staunchly refused to allow it to break her spirit. Her husband Pete once told me that rather than allowing CF to define her, Sheri defined CF. Cystic Fibrosis on Sheri’s terms.

As the lyrics of the hymn scrolled through my mind that evening on the beach, I began to think that the words contained some of the answers she might give me, answers to the questions of how to weather the losses and disappointments, how to face my fears, how to resist bitterness and choose thankfulness and joy even when I feel battered and bruised. “Be still my soul” is a good start.

“Be Still, My Soul”
by Catharina von Schlegel, 1752
Translated by Jane Borthwick, 1855

Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

Be still, my soul, though dearest friends depart
And all is darkened in the vale of tears;
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrows and thy fears.
Be still, my soul; thy Jesus can repay
From His own fulness all He takes away.

Be still, my soul; the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul; when change and tears are past,
All safe and blessed we shall meet at last.

I love you so much, Sheri. Thanks for loving me. Thank you for being a great example, leaving for us a legacy that continues to guide and inspire our journeys of life and faith. I’m so grateful for the 26 years I had with you, and that I’ll see you again, when the vale of tears is lifted and love’s purest joys are restored. Until then, you will remain forever part of the fabric of my being, my dear and beloved big sister.

Sheri

Sheri Leigh VanBruggen, September 26, 1968 – September 4, 2004

 

 

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

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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