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

 

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More Conversations with Lucas

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Today is Lucas’s first day of Kindergarten. It’s his first full day experience with school going from 8:56am-3:59pm (yes, that’s really the official time!). I have so many mommy emotions to deal with. Someone stole my tiny baby boy and replaced him with this big, semi-independent six-year-old. He’s more than ready for this phase of life, but me? Well, I’m working on it.

The good news is that I finally have a solid stretch of time to attend to a lengthy to-do list! So naturally I’m going to ignore that and sit on the couch thinking about Lucas and writing about him 🙂  Here are some funny conversations we’ve had with him the past few months.

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L: Mommy! While Daddy was hugging you I ran upstairs and hid your Mother’s Day surprise in my room!

B: Oh wow! Okay, I won’t go in there.

L: It’s okay, you can go in there because you can’t see it. It’s in my closet behind the sign that Uncle Tony made for me. On Sunday Daddy and I will see if you can find it.

J: Um…

L: Don’t worry Daddy! I didn’t tell her what it was.

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L: Mommy, why don’t you ever take a shower in this bathroom anymore?

B: The shower is broken and we haven’t gotten it fixed.

L: Why?

B: Mostly because it costs a lot of money to get things like that fixed and we don’t really need to use that shower.

L: Oh. But I know Mommy!! You can have my tooth fairy money to fix it! Would that be enough?

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L: Mommy! Come look at this! [holds up his potato chip]

B: Okay, what am I looking at?

L: My chip! Look!

B: Okay……..????

L: Can’t you see it’s shaped just like Vermont?

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L: Mommy, Grandma Waterloo said I have eagle eyes. What does that mean?

B: That means you have really good eyesight, because eagles can see tiny things from very far away.

L: Oh! Does Grandma know I have really good earsight and nosesight too?

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J: Lucas, do you know one way in which you and Mommy are alike and I’m different?

L: Mommy and I are smart and you’re forgetful?

J:…Um…I was going to say you and Mommy were born in Michigan and I was born in Ohio.

L: Oh.

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B: Lucas, come quick! There’s a wild turkey in the street!

L: Whoa!

B: Or maybe that’s a pheasant? No, it’s a wild turkey. I think. I’m not sure.

L: I love it so much! I’m going to say thanks to God. Dear Jesus, thanks for sending a wild turkey but it might be a pheasant to Middleton so we could see it. Amen.

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L: Mommy, look! There are dandelions in our backyard!

B: Yeah, I see those.

L: Wow, this is our lucky day!

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B: …and when Joseph was in the far away place, God was still with him. Isn’t that great?

L: Yes! And when Joy and Bing Bong were in the memory dump, God was still with them.

B: Um, well…

L: And when Joy and Sadness got sucked out of headquarters God was still there.

B: Uh…

L: And when Riley moved to a new house, God was still with them in California!

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J: It’s time to go but I have to get something out of my car.

L: I thought we were taking your car!

J: It’s kind of smelly right now. I think Mommy would prefer if we took hers instead.

L: Oh. Well don’t mind smelly as long as it’s not too smelly.

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L: Mommy, do you know what we forgot to do yesterday?

B: What?

L: Read Bible stories after lunch.

B: Oh, right. Let’s be sure to do that today. We can also read that book about hermit crabs I have in my office if you want.

L: Okay. But let’s read the Bible stories first because I like God better than hermit crabs.

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L: Mommy, did you know monarch butterflies are poisonous?

B: They are?

L: Yeah, they’re poisonous if animals eat them. But don’t worry, I’d rather stick with sandwiches anyway.

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That’s all the conversations I have for today, and it’s only 11:30 am! T minus four hours until I can leave to pick up that sweet and funny boy from school. I guess maybe I’ll have a glance at that to-do list afterall. Happy September everyone!

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

Six Years Old

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Happy Birthday to our sweet boy Lucas! I have to say, I loved five. What a great age it was and what a nice year we had! Lucas has changed so much over the past year. I suppose that happens every year, but at age six, he seems so much older and more mature than he did a  year ago. That’s not to say he still isn’t unreasonable at times, and he’s definitely still stubborn, but he’s taking many steps towards being more flexible and more independent. *Happy sigh.

I peeked back to the last few years’ birthday posts to read what Lucas was up to at those times, and it seems as he gets older, his interests are staying more consistent. There’s more crossover from last year than any other year, but of course he’s into new things too.  Every child is special and unique, and here’s some of what makes our little boy tick!

  • Lucas favorites:
    • Color: ORANGE! 
    • Food: a three-way tie between grilled cheese sandwiches, chicken quesadillas, and tacos
    • Animal: cats and chickens
    • Book: The Scrambled States of America by Laurie Keller
    • Movie: Inside Out
    • TV Show: Wild Kratts
    • Sport: soccer
    • Song: Time by the Black Lips

 

  • Deer signs. Oh, deer signs. Lucas’s infatuation with deer crossing signs was just getting started a year ago and now it’s turned into a full-fledge adoration. He used to just like to see the four deer signs that are within a mile of our house, but now we actually go on deer sign hunts where we drive around remote places looking for more. He called them “Deer Sign Adventures.” The record is 16 deer signs in one adventure. He knows where each deer sign he’s ever seen is located and can show you on a map.
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We have deer signs at home too, because as you can see, we have problems with deer in these parts.

  • Speaking of maps, he loves maps and roads and has an impressive internal compass. One of his favorite apps on the iPad is the maps app where he can look at all the roads in the city where we live to see how we get places and zoom out to figure out various routes to further destinations. Sometimes while we’re he’ll ask me randomly, “Mommy, why are we going south?” True confession, if it weren’t for the compass on my dashboard, I wouldn’t know if he was right or wrong half the time. (He’s almost always right). When Aunt Julie was here, he successfully guided her to his favorite bakery two cities over with the proper road names and directions. When Aunt Tina was dropping him off at home and ran into construction, he decided the marked detour was a bad idea and gave her directions to get around it a different way. He regularly draws maps of our neighborhood. He builds road systems on the floor complete with street signs. Even the grout lines in our entryway are roads, sometimes with construction, so watch where you step.
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There was a baaaad traffic jam in the city on this day!

  • A new hobby for Lucas this year is geography. He spent many months poring over our globe learning the continents and various countries. For a while he really wanted to take a trip to China and was convinced we were headed there any day now. I got the book The Scrambled States of America by Laurie Keller which then shifted his attention more to the U.S. He knows the names and shapes all 50 states. He is constantly noticing things that remind him of one state or another. He told me last week that our backyard is shaped like Nevada and he was delighted to discover he had a potato chip that looked just like Vermont! His favorite states are Minnesota, California, Tennessee and of course Michigan.
  • Lucas has also gotten into calendars and dates this year. He paged through and learned the months and figured out how the days and dates work. He stole my calendar and wrote all his farm animals’ birthdays on it. He has a great memory for what he considers important dates. The other day when we were talking about how much he had loved his Young Fives class, he reminded me that he had one bad day, on May 19th. He also remembers that his buddy Greyson came with me to pick him up from school. “Remember Mommy? On April 26?”
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Adding “Friendly’s” birthday to the calendar

  • Soccer is a huge love in Lucas’s life right now. He played on his first team this past spring.

We have been playing all summer in the house and in the yard. He also loves watching soccer on TV with his dad and even got to go to Maryland with his dad and grandpa in July to see his favorite team, Manchester United!

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He also loves Detroit City FC and went to most of their games this season–mostly with Jaime but sometimes with me and once with his best friend, Elliot. When we play soccer at home he pretends to be his favorite player from Detroit City, #32, Elijah Rice.

  • Lucas still has a great imagination and it’s so fun to hear him playing! He still loves to play with his farm, although more often than not, he’s conducting a soccer game at the farm with his animals these days. The teams that most often face off are Manchester Barnyard and Chelnsea (don’t forget to pronounce the “n” because this is obviously a different team than Chelsea!) He sings all the songs and does all the chants he knows from the Detroit City games. He also sings the national anthem…or something resembling it with lots of mumbling and confusing phrases like, “as the twilight lost beaning.” When I suggested to him that I could teach him the actual words, he informed me that this was a different song that they sing in pretend life.
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Manchester Barnyard vs. Chelnsea!

His imagination extends beyond farms and soccer too. He constructed a pretty elaborate “Headquarters” from the movie Inside Out and puts on different “movies” he makes up with those characters for my viewing pleasure.

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Headquarters complete with the console, memory spheres, emotions, and mind manuals.

He still likes to sing and has taken to using a Ziploc bag top as a “progress bar” so we know how much longer we have in the song.

He finds creative ways to act out his favorite stories.

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Acting out the scrambled part of Scrambled States

I love all these things that make Lucas the special little boy he is! But my favorite is still all the affectionate hugs, kisses, and I love yous.

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Happy, happy birthday Little One. We love you a billion.

 

 

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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Summer, summer, summertime

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Summer is the best. I know some people are really into skiing and hot chocolate and all that jazz but give me the sunshine any day! It’s been a different sort of summer for us. Betsy’s stint on IV antibiotics was unexpected and required us to change some of our plans, but nevertheless we have had a great summer so far. We’ve spent lots of time outside and in the garden and at the pool. Here are some other things we’ve been up to over the last couple months!

Breathing Easier

Betsy has been PICC line free for almost two weeks now and has been feeling pretty good overall. She was back to see her pulmonary specialist last Friday and her FEV1 was holding strong at 38 so that was very encouraging! It’s an understatement to say that Betsy has felt liberated. She is not one to take things lying down and she certainly prefers not to be bound by the strict regiments that IV antibiotics require. Since the 4th of July, Betsy has been free to resume her normal life. She goes to bed when she wants (usually after only one or two friendly reminders from yours truly), she wakes up when she wants, she exercises when she wants. Ah, freedom!

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It’s a lot easier to play soccer with your 5 year old son without a PICC line in your arm.

 

Thank You

Even though it’s been a couple of months, I wanted to say a belated thank you to everyone who participated in the Great Strides Walk this year. We are grateful for everyone who walked with Betsy. It’s a small gesture but it’s a very meaningful one. In a lot of ways, Betsy walks the CF path alone and so it is encouraging for her to look up and see that there are people walking along side her. Thanks, too, to everyone who contributed to our fundraising efforts. As a team, we raised over $4000 that will go toward research being done by the Cystic Fibrosis Foundation. This important work is bringing new treatments to CF patients. It’s very encouraging and every dollar brings us closer to finding a cure. Finally, we wanted to thank to our dear friends Ross and Deb who have organized Team #Breathe4Betsy for two years in a row. Coordinating the team is a labor of love and we really appreciate their efforts that have made the last two Great Strides Walks possible.

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Team #Breathe4Betsy 2017

And I Would Walk 500 Miles…

Speaking of walking. Back in January of 2016, Betsy got a Fitbit. Last December she had a streak of 100 straight days of achieving the target of 10,000 steps per day. On July 17, Betsy completed 365 consecutive days of logging a minimum of 10,000 steps. One whole year. That’s not 500 miles. That’s approximately 2200 miles. Crazy weather conditions, being sick, dealing with back issues, a PICC line stuck in her arm – nothing has prevented her from getting out and staying active. Physical activity is so important to her overall health and being physically fit is what allows her to do so much in spite of her compromised lung function. I’m really proud of her. Long live the Fitbit streak!

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July 17, 2016. The last day Betsy didn’t walk 10,000 steps.

Detroit City F.C.

My borderline insane affection for soccer is well documented. In 2012, I started following a 4th division soccer team here in Detroit. Detroit City F.C. may technically have amateur status but you’d never know by going to the games. When I was a kid I would watch games from Europe on TV and dream of having a local team of my own to support. Now I do. The last couple of summers, though, Lucas has gotten on to the bandwagon as well. I took him to a game two summers ago and we barely made it to halftime before he was ready to leave. Fast forward to 2017 and he is almost as obsessed with the team as I am. He knows the players and pretends to be them when we play soccer in the backyard or in the kitchen (yes, we do that). A couple weeks ago we were at a game and decided to hang around for a little while afterwards. Lucas got to meet several of the players. He was over the moon!

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Lucas with some of his favorite Detroit City F.C. players!

Silver Holloware

On July 14, Betsy and I celebrated our 16th wedding anniversary. In case you were wondering, the traditional gift for one’s 16th wedding anniversary is silver holloware. In case you were wondering, holloware is stuff like sugar bowls and tea pots. Having exactly zero need for a silver soup tureen, we decided to skip the gifts. Instead, we got take out and had a picnic at one of our favorite parks. It was a low key evening, but it was fun to reminisce about the last sixteen years and think about the next sixteen (assuming Betsy doesn’t kick me to the curb before that!).

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The day I won the lottery.

Eventually school will resume and leaves will start to change color. But there is still a lot of summer (glorious summer!) left. In a couple weeks, Lucas and I are taking a road trip to see his other favorite soccer team, Manchester United, play in Washington D.C. Lucas’s 6th birthday is coming up at the beginning of August. And we have a long weekend at Lake Michigan penciled in for later that month. I suspect Betsy may be sizing up one or two more projects around the house as well. We are having a huge pine tree removed from our yard and if I’m not mistaken, Betsy will be eyeing that plot to expand her garden. Being married for 16 years gives you a 6th sense for that sort of thing. 😉