Great Strides (Again)

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Over the years Betsy and I have participated in the Cystic Fibrosis Foundation’s Great Strides fundraising walk. It is held annually across the country during the month of May, coinciding with Cystic Fibrosis Awareness month. Last year, for the first time, some friends helped us organize a team to walk on behalf of Betsy. It was a chilly morning but such an encouragement to see so many friends and family come together to support Betsy.

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Team Breath4Betsy 2016

We are walking as a team again this year. “Breathe4Betsy” was coined by one of my sisters a couple of years ago to use as a social media hashtag as a way to encourage Betsy before a particularly nerve wracking breathing test. Through a lack of other great ideas, we decided to recycle the name for our team.  I’m glad the name has stuck. The name is a reminder of how a simple thing such as taking a breath of fresh air is difficult for Betsy.

Of course the actual walk is only one component. Equally important is the fundraising that we are trying to do as a team. We set a team goal of $3500. Earlier this week we hit our fundraising target. We are thankful for everyone who donated to this important cause. There is so much promising research going on. The Cystic Fibrosis Foundation has a webpage dedicated to all of the medications in various stages of the development pipeline. None of these new treatments would be possible without research dollars. Every dollar that goes towards CF research provides Betsy and many others with the hope of a different life. When Betsy was born, the life expectancy of the average person with CF was around 18 years old. Now, a cure for the disease is within the realm of possibility.

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If you would be interested in partnering with us, we would love your support! You can donate to our team’s ongoing fundraising efforts by clicking here. It’s a pretty painless process. And every dollar really does make a difference!

CF Awareness Month

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May is National Cystic Fibrosis Awareness Month. Though I’ve talked about various aspects of cystic fibrosis on this blog over the past three years, I’ve certainly not covered all the facets of the disease or of my life with chronic illness.  In honor of CF Awareness Month I’d like to answer any questions that you readers have.  Are there things you’re wondering about the disease itself?  Do you want to know how I handle certain situations, or specifics about how cystic fibrosis affects me physically, mentally, emotionally, or spiritually? Maybe you wonder what it feels like to live and breathe with reduced lung capacity or what I think are the best and worst things about cystic fibrosis. I welcome any questions you have (don’t be shy!) and I hope answering them helps to raise awareness.

Feel free to ask a question in the comments section or to email me at bvbrighthope@gmail.com. I’ll write a post answering any queries that come my way, so be sure to check back.

A Different Kind of Strength

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

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

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

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

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

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” ~2 Corinthians 12:9-10

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

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

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

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

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

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

God, give me strength!

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

 

 

Great Strides 2017 – Breathe4Betsy

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It’s that time of year again, Great Strides time! Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event.  Here is an explanation from their website:

Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis and raise awareness for this rare, genetic, life-shortening disease that makes it difficult to breathe.

The CF Foundation is leading the way in innovative research and drug development, promoting high-quality, individualized care and helping people with CF live better todays. Nearly every CF drug was made possible by the Foundation and because of funds raised from Great Strides, people with CF are living longer, healthier lives and pursuing their dreams. But still, the lives of people with this disease are still cut far too short.

Great Strides provides a fantastic opportunity for family, friends, students and colleagues to come together to help make a difference in the lives of people with CF.

Together, let’s LACE UP. WALK. CURE CYSTIC FIBROSIS.

We had a great time walking with our teammates last year and we raised over $4000. Please join us in our efforts this year!  If you’re local and can come to the event, it is being held on May 13th at 11:00am.  This year’s location is at Millpond Park in Saline due to construction at the usual walk site.  To join our team, please sign up here. If you’re not local, you can still sign up for the team and raise money as a virtual walker. If you would like to support my fundraising efforts, please visit my personal page.

 

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Come take steps and make strides with us!

We have so much hope that new life-altering treatments and maybe even a cure will be discovered in my lifetime. There is a lot of positive momentum now and strides are truly being made.

We’re not there yet, but we’re closer than we were yesterday. And so we keep walking.

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Thank you all for your love and support!

Conversations with Lucas: Brains, Bathroom Talk & Big Words, Predators & Prayers

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Our Cutie Comedian

L: Daddy, let’s play the chasing game! But we should take our socks off so we don’t slip.

J: I’m going to leave my socks on, my feet are cold.

L: But Daddy, I really, really want you to take your socks off!

J: I’m too cold! But if I slip I’ll take them off.

L:  [Thinks for a moment…] Okay Daddy.

[Game commences]

L: Daddy, pretend you slipped!

[Jaime purposely slips and falls]

L: Okay, now take off your socks.

J: Hey!

L: You said if you slipped you’d take off your socks!!

B: I think someone outsmarted you…

J: You tricked me! But I tell you what, if you catch me, I’ll take them off.

[Frantic chasing ensues]

L: Daddy, pretend you let me get close to you…

*

[Lucas and Jaime are doing a puzzle of the United States]

L: Um, Daddy, that’s not where Nebraska goes!

J: Oh man, you’re right!

L: Yeah. I guess you’re not the smartest human in the world.

*

L: Mommy!

B: What up?

L: I just went potty.

B: OK.

L: But Mommy?

B: Yes?

L: You might want to go clean the wall.

*

L: Mommy, upstairs is Daddy’s bathroom, downstairs is your bathroom, and this is my bathroom.

B: Really.

L: Yeah. It’s special. Try your hardest to keep that in mind.

*

L: Guess what I know about science?

B: What?

L: Chicken poop helps flowers to grow! But not human poop.

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L: Mommy, I’m all done with my lunch!

B: That’s great!

L: See! Look at my plate. It’s barren!

B: Barren?!

L: Yup! There’s nothing there!

*

L: Mommy, at my farm Henny is smart. King doesn’t know anything yet.

B: Oh?

L: Yeah, King’s igernant. Wait, what’s that word again?

B: Ignorant?

L: Yeah igernant.

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L: Mommy, what does endemic mean?

B: Endemic? Where did you hear that?

L: On Wild Kratts, the one called Lemur Legs. It means an animal that only lives in that place like the lemurs in Madagascar.

B: Oh. Hey wait, if you knew what it meant, why did you ask me?

L: I just forgot for a moment and then I remembered.

[Lucky break…I was going to have to look it up]

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L: Mommy, come look! The mouse is living with the owl in my barn!

B: Really? Won’t the owl eat the mouse?

L: No, this owl eats different kinds of mice. It eats technology mice.

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L: Maybe we can get Madagascar from the library again.

J: Sure, we can do that.

B: Really? There were some scary parts. If we do we might have to fast forward through the scary parts like where the crocodile swallows the…

L: OR WE COULD JUST STAY CALM.

L: I do like Inside Out better than Madagascar. Inside Out is kind of lovely. Madagascar is kind of scary.

*

[Bedtime prayer]

L: Dear God, please help Mommy’s fingers to feel all better.  And please God, send us a new glass bowl.

*

L: Mommy, why are you just standing there?

B: I’m a little nervous to get on the treadmill.

L: Why, Mommy?

B: It’s just hard for me.

L: Don’t worry, I’ll pray for you! Dear Jesus, please help Mommy be brave to run on the treadmill so she can get all better. We love you, thanks, in Jesus Name, Amen. There. Do you feel much braver now?

B: So much braver Little One. ❤

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A Little Help From Aunt Sheri

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I was still in college when my sister Sheri gave me a gift. She had been a special education teacher for more than five years in a Michigan town before the stresses of the job combined with her CF struggles became too taxing on her body. The district in which she taught was a low-income area that housed a prison, and some of her students had parents or other relatives in that prison. The needs were great. Sheri’s heart was big and she was the perfect one to love and nurture these children while helping them learn.

Because her district didn’t have the resources that some wealthier areas have, Sheri invested a great deal of her own money and time into making materials to use with her students. Her creativity really shone through in a lot of what she made, and when she left teaching, she brought some of it home with her. She gave it all to me while I was in college preparing for my own teaching career. I was able to use her creations in my own classrooms and later, with my tutoring students as well.

This fall I acquired a new student…an extra special young five named Lucas. At conferences, his teacher mentioned that he could use additional practice with fine motor activities such as writing his letters and cutting. For several years now, Lucas has been asking when he would be old enough to be a tutoring student and this was the perfect opportunity to make extra practice at home exciting for him! I put together a program which included muscle strengthening and fine motor practice but also tasks I knew would be fun and easy for him to make it an enjoyable time for both of us. When I broke the news to him he was thrilled and proud to be old enough to come to my office like a big kid. And I was excited too! It’s been lots of fun to have these two loves of mine intersect. Lucas has been an enthusiastic participant.

I was also excited to take out some of Sheri’s creations that had been dormant for a while. I told Lucas all about how she had been a teacher and how she had made a lot of the tools we were using to learn. We keep a picture of her nearby while we work–a Christmas ornament she made with her students one year. I even found some fun animal pencils she and I had made together once and the cat pencil has become Lucas’s official tutoring pencil.

I wish that Lucas could have known Sheri and that she could have known him. Someday that wish will come true. But for now, I’m so grateful that she can still be part of his life, even in this small way, and that we can remember her together as we learn.

img_0985Lucas was one excited boy on the first day of tutoring! He even uses the outdoor entrance like my other students do. After all, he wants it to be official!

Coloring, cutting, matching, tracing. It’s all good.

Here we’re using some of Aunt Sheri’s materials! Lucas is holding her special pencil and ornament, working on more matching activities that she put together, and jumping on vinyl letters she cut out and labeled to blend sounds into words.

img_1535Today in tutoring we learned how to draw a cat. Perhaps Lucas didn’t inherit Sheri’s natural artistic abilities, but I think they’re great and I know she would have liked them too. 🙂

Sheri, thanks for the help! Your legacy lives on.

The Glory of Week Three

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Happy New Year a month late! I didn’t intend to let so much time pass between my last post and now, but things got extra busy with the holidays, and after…well, I just felt a little uninspired.  I suppose that sometimes I need a break, even from things that I greatly enjoy. I follow several CF blogs and when someone doesn’t post for weeks on end, I begin to wonder if they are alright. I hope none of you were concerned!

We had a wonderful holiday full of family time, fun, and relaxation. Here’s a few of my favorite photos from Christmas:

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Christmas morning!

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Lucas made Jaime a hat…

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And me a necklace 🙂

The new year started with a bang…in the form of a virus that hit me on January 2. Admittedly, it wasn’t my favorite way to ring in the new year. Unfortunately, Lucas caught my virus and missed a whopping four days of school the second week of the month. This virus made him sicker than he has ever been and seeing that made me very grateful for how well I weathered it.

I wrote in December about my uncommon cold and this virus progressed in the same way, except for one notable difference. My doctor was out of town when I got sick, and the day it became clear that I needed antibiotics was a Sunday. Because of these two factors, I was prescribed antibiotics by an on-call doctor who has never met me. To his credit, he listened carefully to me, allowed me to (respectfully) question his antibiotic choice, and even accepted my personal recommendation for what antibiotics I thought I needed (based on what I guessed my own doctor would have prescribed).  And I must say, I chose well for myself. I started to feel better after just a few doses. The one difference, though, is that this doctor prescribed me three weeks of antibiotics rather than two. I used to always get three weeks, but lately my doctor has been giving me just two weeks of treatment. Two weeks is sufficient to kick the infection, but three weeks is just so wonderful. I simply love week three.

That may sound strange, but week three of antibiotics is the closest thing I get to a vacation from CF. Of course I use that term lightly. I still have to do treatments and therapy every day. I still have to take a handful of pills with each meal. I still have 40% lung function. CF never really takes a break. But by week three of antibiotics, the infection is gone and my chronic levels of bacteria are lower than normal. Because of this, I produce less mucus and cough far less than I usually do, even at my healthiest. My chronic cough is hard on my body in many ways. When it vacates or lessens for a bit, my life becomes easier. Here’s a few things I noticed last week during week three:

Monday: I woke up earlier than usual and still felt rested. I breezed through my treatments in record time because there was so little coughing and so little mucus to clear. Lucas and Jaime hadn’t even left for school and work and I was already through my morning routine! What to do with all my extra time?!

Tuesday: I (almost) made it to my 9:45 am Bible study on time. That. never. happens.

Wednesday: I had so much free time after my speedy treatments that I decided to go for a walk in the morning. And run some errands. I picked up Lucas for school. I decided to run more errands with Lucas. Let’s hear it for energy!

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One errand was to buy a birthday gift for Lucas’s cousin. He can’t wait to give it to her!

Thursday: I had a friend over in the morning. No need to preserve my kid-free time after I knocked out my entire to-do list yesterday! My friend commented on my clean house. That’s right, a clean house at the end of the week!!  I picked Lucas up and after lunch, we decided to put up some new maps we bought for his room. Several hours later all the wall decor in his room was rearranged and re-hung. I had five hours of tutoring that evening, but who needs to rest when it’s week three!

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Lucas is thrilled with his world map and US map (behind). He can start teaching me geography now.

Friday: CF decided to remind me of its presence this morning. In all my productivity yesterday I forgot my digestive enzymes at one meal. I spent the morning feeling sick to my stomach, but I was still able to get out for a brisk walk before I picked up Lucas, because #weekthree.

Saturday: I took my last dose of antibiotics. It felt a bit sad to bid farewell to my security blanket. I knew I would have a few more days of feeling better than usual, and with that in mind, I headed out for a walk. I surprised myself by powering through 2.5 miles in 38 minutes.

Sunday: I decided to do as much as possible to get into good shape before the adjustment phase hits and went out for another walk. I got through three miles in 48 minutes. Not bad!

Monday: Week three was technically over but I still felt great. A former student texted me and asked for an emergency tutoring session before an exam. Tacking on two extra hours of tutoring didn’t seem like a big deal so I agreed. (This just in…she aced her test!)

Tuesday: Week three’s extra energy was still fueling my fire so I decided to write a blog post on top of my Bible study and tutoring today. And here I am 🙂  I’m thankful for week three and for each day of feeling strong and energetic. I’m learning to enjoy these days as a gift rather than focusing on the fact that they won’t last.

Because they won’t. I know that things are going to get more difficult in the next few days. I also know that I’ll get through it and adjust to my normal once again. It will mean longer breathing treatments, earlier nights, later mornings, less productivity, more coughing, and more exhaustion. I’ll have to start over on my running goals and pace myself throughout the day. But it’s still a wonderful life–my own wonderful life. And God always supplies the grace and strength that I need. The glory of week three is behind me but there are blessed and happy days ahead!