Blue Skies


Summer weather has finally arrived here in Michigan!  I say finally because it has been a cool spring and this past winter was extremely cold and snowy.  We got a record breaking 90.3 inches of snow.  I don’t know when I’ve been so eager for warm weather!

Summer is my favorite season. I love it because I enjoy all the outdoor activities–vacationing at a lake, splashing in pools, taking walks on beaches, strolling in the neighborhood with my boys after dinner.  I love the feeling of warm sun and the brilliance of clear blue skies.  I love the long days and sound of crickets chirping at night.

Lucas loves to be outside too.  He likes parks, playgrounds, and wandering around the neighborhood.  He likes to tromp through the woods, stomp in puddles and examine insects.  He enjoys lazy walks downtown.  He loves water and finally, this past weekend, the pool opened!  We spent a few hours there on Sunday and it was heavenly.


imageDuring that wonderful afternoon with my boys, I was reminded of one of my favorite Bible passages:

“The Lord bless you
    and keep you;
the Lord make his face shine on you
    and be gracious to you;
 the Lord turn his face toward you
    and give you peace.”

Numbers 6:24-25

With the warm sun shining down on me, spending a relaxed afternoon with my little family, I felt so blessed.  God has turned His face toward me, He has given me peace, He has kept me through trials and triumphs, and He has been so very gracious to me.

I’m thankful for my life with all its blessings and all its challenges.  Sometimes the blessings and challenges are so intertwined they can’t be separated.  I love the days when the skies are blue, the breeze is warm, and everything is going smoothly.  But somehow I don’t think the blue would be so brilliant if I didn’t also experience the storms, the cold winters, the times of struggle and hardship.  God doesn’t promise blue skies every day.  But He promises to never leave me and never forsake me (Deuteronomy 31:6).  He gives me strength and courage.  It is enough to know I am loved and cherished by the Maker of the heavens and earth; by the Artist who fashioned those beautiful blue skies.


The Most Important Meal of the Day


Eating nutritious foods is one of the ways I try to maintain my health.  I’ve made a lot of changes to my diet over the past several months and it has helped tremendously.  I haven’t seen any improvement in my lung function tests, but I have noticed positive changes in my energy level, the amount of congestion I wrestle with every day, and my ability to fight off infections.  I only got sick once this past winter and was able to completely avoid several colds my boys brought home.  That’s notable!

This study of diet came out of a frustrating situation.  You see, as cystic fibrosis progresses, bacteria colonizes in the lungs.  That means that even if I’m not sick, there is always bacteria present in my lungs.  Sometimes it just sits there relatively quietly, contributing to inflammation but not making me acutely ill.  Other times it flares up and causes acute symptoms, perhaps because I got a virus or sometimes for an unknown reason.

There are inhaled antibiotics that are used routinely to keep this colonized bacteria under control.  They are helpful because they go straight to the source of the problem.  Unfortunately, I have tried them all and cannot tolerate any of them due to my asthma (they cause wheezing, chest tightness, and lung irritation).  Out of frustration Jaime started researching natural remedies and we found there are a lot of foods out there that can help with my specific issues: inflammation, bacteria, and the need for a strong immune system.  Eating healthy was not new to me; I was raised eating all kinds of fresh and healthy foods, but the idea that I could eat certain foods to address my specific issues was new and exciting!

As I mentioned before, I cut dairy out of my diet due its links to asthma and congestion.  Then we started looking for foods that would help with immunity, inflammation and bacteria and were surprised to find many great options! I won’t write about all the foods I eat in this post, but let me tell you about my breakfast.

imageI try to eat this dish several times a week, and here’s what’s in it: coconut oil, eggs, kale, red cabbage, mushrooms, freshly grated turmeric root, chia seeds, freshly ground black pepper, and quinoa.  Here is how these foods help my body:

Eggs are high in vitamins, protein, and healthy fats.  They help me keep my weight up.

Coconut oil is anti-inflammatory, helps with nutrient absorption, is anti-microbial (kills a variety of disease-causing bacteria, fungi, viruses and parasites), and helps stabilize blood sugar.  (According to the Cystic Fibrosis Foundation, 43% of adults with CF over the age of 30 develop cystic fibrosis related diabetes.  I don’t currently have diabetes but I did have gestational diabetes during my pregnancy and am careful to eat foods that keep my blood sugar stable).

Kale is very high in vitamins A, C, and K.  Getting a lot of vitamins A and K is especially important for me because they are fat soluble, meaning they need fat in order to be soaked up by the body.  CF patients tend to be deficient in them because we have trouble absorbing fats.  Kale is also high in antioxidants which boost immunity.  I’ve even read that it reduces the amount of mucus in the lungs!

Red cabbage boosts immunity, is anti-microbial, and antibacterial.  In fact, it has been shown to kill the bacteria Staphylococcus (both regular Staph and Methicillian resistant Staph), and Pseudomonas.  Both Staph and Pseudomonas common CF colonizers.  Red cabbage is also effective against the fungus Aspergillus which can live in the airways of CFers. Red cabbage improves digestion and is high in vitamin C.  (

Mushrooms boost the immune system, increase white blood cell count to aid in fighting infection, have antibiotic properties,  and stimulate the appetite.

Chia seeds are have high amounts of omega 3 fatty acids (to keep me smart 😉 ), are high in protein, have high levels of antioxidants to boost immunity, are easily digestible, and stabilize blood sugar.

Black pepper aids with digestion, reduces congestion, is anti-inflammatory, and has antibacterial properties.

Turmeric root is a powerful antioxidant, is antibacterial, and is anti-inflammatory.

Quinoa is high in calories and in nutrients.  It has a lot of protein and a good amount of vitamins.  It aids with digestion and stabilizes blood sugar.

I’ll be writing more about diet and foods in upcoming posts.  I’m still reading and learning about it and adjusting my diet to meet my needs.  I got a lot of personalized help from my friend Erin who is studying to be a dietician and is a wealth of information.  Check out her blog here:

Jaime found a blog called “CF and Healthy,” and reading that blog was what prompted this whole study.  There is a lot of CF specific diet information and links to news articles which are very interesting:

I admit, preparing these kinds of foods takes time.  It’s a lot more work than pouring milk on a bowl of cereal.  But I’m feeling stronger and healthier, and that makes it well worth the effort.  Health, it’s what’s for breakfast!

Operation Up Scale


I’ve been thinking lately about setting some goals for myself.  But sometimes when I decide I need to make some changes, my eyes get too big.  I start thinking of all the areas in my life where I could be doing better and I decide to tackle them all at once.  That’s a good recipe for failure.

I also set unattainable goals sometimes. For instance, after my big CF health crisis in 2006/2007, I set a goal to get my FEV1 back into the 60s.  I had previously spent lots of years in the 60s and low 70s, and I really wanted to get back there.  I worked very hard to achieve that goal.  I rested and slept, I reduced my stress level, I ate healthy foods and I gained back the weight I lost during the extended illness.  I worked up to jogging, I lifted weights, I did all my treatments and therapies, and I took all my medications.  But I never made it back into the 60s.  It couldn’t be done.  Rather than feeling like a failure for not getting there, I should have felt like a success for doing everything in my power.

And so this time I want to set achievable goals.  Instead of tackling them all right now, I’ve decided to address one at a time.  Once I meet one goal or at least get a good start on it, I’m going to try to add in another.  Manageable is the key, right?

I’m going to start with gaining a few pounds.  Many CF patients have low body weight because thick mucus obstructs the pancreas and blocks the body’s natural enzymes needed for breaking down food and absorbing nutrients.  Taking digestive enzymes helps, but they don’t completely solve the problem.  Also, living with reduced lung function and constantly fighting off infections uses lots of energy and burns lots of calories.  Because of this, people with cystic fibrosis need 20-50% more calories than the average person.

I recently changed my diet which has helped me to feel better overall.  (I’m working on a post about it right now).  One of the changes I made was cutting out dairy.  Dairy has links to asthma, congestion, and is somewhat difficult to digest.  Within a few weeks of eliminating it from my diet I had a less congestion and more energy.  But eliminating dairy has contributed to some weight loss.  I relied on dairy products for easy calories.  It’s time to find a way to gain the weight back and keep it on sans whole milk, cheese, yogurt, and shakes.

Before you start wishing to be me, know that it’s neither fun nor easy for me to gain weight.  Because my caloric needs are already higher than average it takes a lot of effort to actually gain weight.  I have to think about food all day, remember to eat many snacks, eat beyond when I feel full, and count calories.  It’s a pain.  Some people dream of being able to eat whatever they want.  That usually translates to junk food of some sort.  But eating unhealthy foods only complicates other health issues and so I certainly don’t want to gain weight that way.  I need to give my body foods that fuel it and enhance its performance, not foods that cause digestive issues, inflammation, and sluggishness.

So why all the focus on weight?  Healthy body weight is linked to higher lung function and the ability to fight off infections for CFers.  Having a healthy weight also strengthens the immune system.  Plus, when I’m at my optimal weight, I feel more energetic.

So on Monday I’m starting Operation Up Scale.  I’d like to see the scale go up about five pounds.  I’m starting to stock my cupboards.


I’ll keep you posted on how I’m doing.  I’m hoping that blogging about it will keep me accountable.  So here’s to a weightier me!

What 47 Can Do


I had a pulmonary appointment this week, and my FEV1 was 47% again.  I was hoping the number had bumped back up (I had been in the low 50s for quite some time previously).  But I have to say, for the first time, I felt unfazed by it.  That’s big news.  I think it has something to do with sharing that number on my blog earlier and letting go of some of the secrecy? pride? shame? worry? that went along with it.  I finally was able to see it and then shrug it off.  Thanks for the free therapy, readers!

I did voice some confusion about this lower number to my doctor saying I haven’t noticed a change that would account for the drop.  And really, even at 47, I feel like I lead a fairly normal life.  I mean there are daily challenges.  And there are moments that are bad.  But overall, I’m living well.

He confirmed that FEV1 is only part of the story (Mom was right!).  He said that one of the mysteries of CF is that sometimes patients with high FEV1s, like in the 70s or 80s, struggle as much or more than those with moderate numbers like mine. He stressed the importance of keeping other body systems healthy so the body can efficiently use the oxygen that the lungs are supplying, even if the lungs aren’t functioning at 100%.  Apparently my body has become pretty efficient in that way.

I used be a very active person and I still desire to live that way.  I wish to have the energy to walk everywhere and bike and run.  I’d like to take fitness classes and mow the lawn and do projects around the house.  I’d like to chase Lucas without stopping to catch my breath.  I wish he didn’t have to say, “Mommy needs a ‘yittle’ rest.”

In the past I would always get in trouble with my husband because I’d start something and go full steam ahead until it was done.  Forget eating, sleeping or taking breaks.  I would get something in my head and get this fierce determination to do it no matter what.  (Once I carried/pushed/pulled a couch and an easy chair up the basement stairs and outside onto our porch by myself because we had forgotten to carry them up together, and Jaime was already at work.  Good Will was coming to get them.  I was definitely NOT going to reschedule the pickup).  In my mind I’m still that person but my body has given me a cease and desist order on that type of living.  It is an adjustment physically and emotionally to have more limitations.  There are some things 47 can’t do.

But there are many things 47 CAN do!  Here are a few of my favorites:

    • Carrying Lucas in the backpack.  I recently carried him 3/4 of a mile to the bus stop and then later carried him back home.  I did feel it the next day (he’s a pretty solid boy at 35 lbs).  But we both enjoy the closeness of it, so I carry on (no pun intended 🙂 ).

Lucas riding on my back

  • Walking while pushing Lucas in the stroller.  The three park circuit we do in our neighborhood is nearly a two mile walk, and we do that anytime we’re at home and the weather is nice.  The longest stretch is 3/4 of a mile and there are “rests” in between (if you count climbing the play structures and playing chase on the tennis courts as rest).

    Lucas enjoying a snack before we head to the next park!

  • Making a home for my boys.  This is not to say I keep the house perfectly clean and organized because since Lucas arrived it is less clean and organized than I’d like.  And Jaime helps a ton, I certainly don’t do it on my own.  But somehow food is made, dishes are done, there are clean clothes to wear, and we’re all happy and comfortable here.
    Lucas helping with baking...

    Lucas helping with baking…

    ...and dishes!

    …and dishes!

  • Tutoring part time.  I love tutoring and am so grateful I can do it a few hours per week.  It’s a different way to use my mind and my students add a lot of joy to my life.  Plus, I get to sit still while I tutor.  Taking care of Lucas rarely affords me that luxury!
  • Spending time out and about.  Lucas and I have several scheduled activities per week including a few classes, a playgroup, and two set lunch dates at Daddy’s office. When I have the energy, we like to spend our free time out as well.  We enjoy riding the city bus, going to the library, visiting museums and petting zoos, and hanging out with friends.


    Lucas seeing some animals with his cousins.


Out shopping with friends!

I do miss the activeness of my past.  I would like to see a higher FEV1 number.  But I still have a lot of determination, and I know that armed with God’s strength I can make the most of the life he has given me.  I’m so very grateful for all 47 can do!

Running the Race


There is something about springtime that makes me want to run.  I think it’s that exhilarated feeling of freedom I get after the long, cold winter has passed.  I can now step out without the bonds of heavy clothing and take a deep breath of warm, sweet air.  I feel light, buoyant, and joyful.  These feelings make me want to move.

I used to run a lot.  I was never very fast, and the furthest I ever ran was eight miles (around Mackinac Island).  But I loved running.  I loved the moment when you were over the hump and the rest of the run just felt good.  I loved the sprint to the finish line.  I loved the feeling of accomplishment when I was done, taking a walk to cool down and feeling a breeze on my hot, sweaty face.  I loved feeling I could go the distance, work my body, stay strong.

After I got so sick in 2006/2007, I ran a 5K as part of my recovery.  As I was training, I realized that running had become very different for me.  It was hard.  I never got over the hump to that good feeling.  If I made it to the end of the run without stopping I was thrilled.  And spent.  I still felt accomplished but I also felt drained.  There was no runner’s high. I kept at it until my pregnancy.  At that time, my doctors told me it was best to keep my heart rate below a certain level and for me, that meant no more running.

Exercise is a very important component to maintaining my health, but with a busy boy to take care of, I have to be careful.  I don’t always have the strength for focused exercise.  It takes a lot of energy to get through my days with Lucas.  And if I put energy I don’t have into workouts, they backfire and I get sick.

It would be silly to say I don’t exercise at all.  After all, I have a two and a half year old boy.  He never. stops. moving.  But my exercise has changed from sustained jogging to the spurts of energy needed to carry Lucas short distances, push the stroller up a hill, hoist him into his car seat or the grocery cart, climb after him on play structures, go down slides meant for children without breaking my neck, and chase him all over creation.

Lucas is big into chasing and running right now.  He runs with his friends, he runs at the park, he runs holding my hand, he runs around the house, and he runs full tilt down the steep driveway (it’s just as scary as it sounds).


There is a passage in Hebrews about running the race.  This is what it says:

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the author and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.” (Hebrews 12:1-3)

This is such a rich passage.  I love the imagery of throwing off what hinders us so we can run the race; so we can live as God wants us to live.  It’s kind of like getting rid of that heavy winter coat.  In my life, there are things that hinder me.  Sometimes I focus on what I can’t do rather than rejoicing in what I can do.  Sometimes I allow fear to take hold and I worry about the future rather than living fully in the present.  Sometimes I compare myself to others.  Sometimes I fixate on what I’ve lost rather than thank God for all I have.  There are days when I feel opposition.  I feel like I am fighting against a power that wishes to consume and destroy my body.  I feel weary from the fight.

But when I consider Jesus, when I fix my eyes on Him, these hindrances fade.  Jesus endured more opposition, more hardship, more pain, and more unfairness than I ever will.  And He knows me.  He understands my struggles.  I am never abandoned in my weakness.  God promises to supply me with His strength.

The apostle Paul had some sort of weakness, a “thorn” that tormented him.  He writes in 2 Corinthians, “But [God] 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...For when I am weak, then I am strong.” (12:9, 10b).

Cystic Fibrosis is definitely a thorn.  It is not pleasant.  I would love to throw it off.  But there are blessings in my life I would not have without this thorn.  It has taught me to be patient and to wait on God.  It reminds me what a gift each day of life is and gives me perspective on what is important.  It has helped me to relate to others who suffer.  It has brought me to the end of my own strength again and again.  And it is there that I find God.  He is waiting for me at the end of my self-sufficiency.  He is ready to fill me with His peace, to show me His purposes and to give me His perspective.  His grace is always sufficient.  He may not give me the endurance to run a marathon, or eight miles, or even one.  But He gives me the strength I need to run the race marked out for today.



A Sleepover at Grandma’s


After Lucas was born, a handful of people told me, “Sleep is overrated.” I think somehow that cliche was meant to comfort me.  You see my order was mixed up and instead of a good sleeper, I got Lucas!  He is many wonderful things, however a wonderful sleeper is not among them.  He woke up every 2-3 hours for the first five months of his life.  At that point I made an appointment with his pediatrician and told her if she didn’t help me, I wasn’t going to make it to his first birthday. And help she did.  It took some creative maneuvering, but within another month we got him sleeping a five hour stretch.

Part of the plan for our family was to have Jaime take care of Lucas in the night.  It started back then and it continues to this day because at 2 years 9 months of age, that sweet boy still does not sleep through the night.  I am so grateful for a husband willing and able to shoulder that burden.  Jaime is perfect for this job on two levels.  First, he doesn’t need a lot of sleep.  Second, he is able to sleep through almost anything.  He can sleep (somewhat) peacefully through the night with Lucas right on top of him, or inches from his face, or nestled in his armpit.  Which is often how I find those two in the morning.

collage I need sleep, and a lot of it.  I feel best if I get nine hours a night.  Sleep is essential for keeping my immune system strong and for fighting off infections.  Being well rested gives me the energy to successfully carry out my daily tasks with reduced lung function.  And I think most moms would agree that good sleep goes a long way when it comes to being patient with small children.

Occasionally Jaime is gone overnight, or gets home very late.  In those instances I know I can always request a sleepover at Grandma’s!  Lucas gets out his backpack and we pack a few diapers, jammies, his toothbrush, and a change of clothes.  We toss a few essentials in his lunchbox and he’s ready to roll. Grandma swings by after work, takes Lucas home with her and brings him back the next day.  He is always excited to go.  I am always excited to sleep.

backpack 1backpack 2

I am grateful for all the ways God provides for my needs.  I’m thankful my supportive husband, our supportive friends and family, and for sleepovers at Grandma’s.

Sleep is overrated?  I think not!