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.

 

 

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

 

 

Five Years Old

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Five years old. I’ll just give you a moment to let that sink in. Okay, maybe I’m the only one who needs a moment. But honestly, the last five years have passed at lightening speed! Four was a great age, and I’m guessing five will be equally wonderful. So while I feel a little sad, I’m excited for what’s next too.  Here are some things that make Lucas the wonderful and unique little guy he is at age five:

  • Lucas wants to be a farmer when he grows up. He loves farms and we visit our local petting farm weekly. He calls himself Farmer Lucas when he helps me harvest vegetables from our garden. He spends many hours a week playing with his toy farm and has slowly added onto it using popsicle stick structures and cardboard boxes to get it to closely resemble our local farm. His absolute favorite farm animals are chickens! He does an amazingly accurate imitation of both a hen and a rooster. He crows like a rooster whenever he sees that Jaime has fallen asleep on the couch, which is a very effective tool for rousing him.
  • Lucas’s other great love is soccer, much to his father’s delight. He went to nearly every Detroit City FC soccer game with Jaime this season and learned all the songs and chants. He also loves watching soccer on TV. His favorite team is Manchester United (which he calls the red team) and his favorite player is Maroune Fellaini whom he also calls Crazy Hair. Lucas watches the live and televised games very closely and imitates what he sees in our backyard. He doesn’t call it the backyard however–it’s simply “The Field.” He got his first real pair of soccer shoes a few weeks back and now wears them every time we play.
  • Lucas is very creative in his play. He found a way to combine his two favorites and built a soccer field in his barnyard complete with a sideline and bench. The animals face off at least once a day. The star player is Henny. He likes me to sit in the “stands” and sing all the songs from the Detroit City games over and over (and over) while the animals play. Apparently it is against stadium rules to lay down during the game, stretch, yawn, or otherwise appear any less than 100% engaged at all times. After the game the animals talk to their coach in a huddle before they line up to shake hands.
  • Lucas has three favorite bedtime stories presently: The Mitten by Jan Brett, The Mitten by Alvin Tresselt, and The Hat by Jan Brett. He told us one day that he wanted to read the stories and we were shocked when he recited all three, word for word while turning the pages at the proper times. After memorizing the stories he put them to good use by finding a large mitten (which was mine once upon a time) and repurposing it as his toy mitten to act out the story with his animals. In Tresselt’s version of the story, the mitten rips apart and sadly, the seams have popped on my pair too after hours of being stuffed with a menagerie of plastic animals. Ah well, it was worth it for the hours of happy play.
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The Mitten!

  • Lucas is still very affectionate and loving.  He tells us multiple times a day that he loves us and likes us. He gives us lots of hugs and kisses. Every day he asks Jaime, “How was work today, Daddy? What did you do?” and similarly he’ll ask me, “How was tutoring, Mommy?” followed by a relevant question such as, “Did [insert student’s name] wonder where I was?” or “Did you see [insert student’s name] today?” It makes us feel special that he asks. I don’t know why, it just does.
  • Lucas knows all the names of the roads near our house and likes to give us detailed (and accurate) directions before we head out. He has two favorite roads, favored because they both have deer signs which he loves. He even knows the name of the service drive that connects them. He has conceptually figured out how the roads and highways near us line up which has surprised and impressed me on more than one occasion. “If you keep going on this road, Mommy, you’ll cross over the highway and end up at the farm!”
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Deer sign!

  • He still loves orange. All orange, all the time. He also still loves singing, and breaks into song often. He’s taken to asking us, “Who wants a song?” and then serenades us with a song of his choice. Most recently, he’s deviated from children’s music and asks to listen to Jaime’s music and my music while riding in the car. While I have edified him with wholesome selections, Jaime has learned the hard way that Lucas memorizes lyrics quite quickly, so it’s a good idea to know yourself what they actually say. I’ve had to do a little damage control. “Silly Lucas, not drugs, bugs.” Jaime is grounded until further notice.

I could go on, but suffice it to say, we love our boy immensely and have greatly enjoyed watching him grow from that teeny baby to our big five-year-old.

Happy Birthday Sweet Boy. We love you so much!

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A Clean Window Perspective

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I love summer. It’s my favorite season.  I could do without the humidity, but I love being outside, I feel at my healthiest in the summer, and I love the plethora of activities that warm weather offers.

As you may have read before, I am also one of those weirdos who actually likes yard work, and there’s plenty of that around during this season. In spite of my lung-limiting CF, I enjoy the physical aspect of working outside and I love how a little elbow grease can transform a space in a relatively short period of time. Last year Lucas got me back into gardening and I have enjoyed having flowers to care for again, and now a few vegetable patches and pots too.

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My flowers are gorgeous this year!

Last weekend, my parents came for a visit and my dad helped me get a few of the outside windows cleaned up. There were some big messes that I couldn’t reach due to our friend Bondo Bird and his springtime attempts to break into our bedrooms. My mom was remarking how clean windows can make such a big difference on outlook. Suddenly the world seems bright and clean and full of possibility. I blame those clean windows and my fresh, new outlook on what happened next.

After my parents left, Jaime and I were admiring the sparkling glass when I began to see more clearly what an eyesore the east side of our house was. We have a huge tree on that side which prevents anything but moss and weeds from growing.  Several years back we tried to plant a few things but they mostly died out. At the base of the tree, tons of stubborn, woody weeds were surrounding the trunk. I started to get some ideas about transforming the space, and Jaime remarked that we could spend a few hours out there over the weekend and clean it up a bit if I wanted.

Sunday dawned and that side of the house was on my mind. In the afternoon, Jaime and Lucas headed out to run a few errands and I went out there to measure an area for our compost bins, thinking that Jaime could pick up a few concrete squares while he was out. It was a nice day and the area was shaded, so I decided I’d get started pulling a few weeds. Man oh man, it was hard. I had to throw all of my body weight behind much of what I was pulling out.  We are having a dry spell here in Michigan and the weeds had anchored themselves deeply in the hard soil. A bit later, Jaime and Lucas returned.  Jaime helped me put the concrete blocks down and then he and Lucas left for a soccer game they were attending in town.  Once the vast majority of the weeds were pulled and dug out, I went inside to eat dinner and make a few phone calls.

I probably should have stopped then, but after dinner, I figured I’d go out for just a few more minutes and get started on an idea I had earlier since Jaime and Lucas weren’t around. We have rocks in various places around the yard from past landscaping, and I thought I could use them to edge a flower bed that would improve the look of the area. So I began prying the rocks out of the ground, pulling them over with Lucas’s orange snow sled. I needed to dig a shallow trench to hold the rocks, and I tested it out to see how difficult it would be. That hard earth got in my way again and I had to jump on the shovel to break through it. I got into a rhythm. The area was longer than I realized (30 feet long and 4 feet out from the house), so I needed lots of rocks. I went into the back to gather more. Minutes turned into hours. I was absorbed and happy.

I was finishing up the edging and moving a few lilies over when the boys arrived home. Lucas helped transplant and water in the flowers. I finished up a few last details and surveyed my work.  I really wish I had taken a before picture. It’s just that when I got started, I had no intention of formulating and executing the entire plan. I was pretty thrilled with the end result though!

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A pretty nice flower bed! (Notice those sparkling windows in the background…)

It wasn’t until I went into the house that I realized how long I had been working. The boys left for the grocery store at around 2:00, and I finished up the job around 9:30. I took about an hour to eat dinner and make some phone calls, so all in all, I think I worked about 6.5 hours on this job. I checked my Fitbit and was shocked to see I had logged 16,000 steps and 7 miles for the day, an all-time high for me. At first I felt pretty elated! After all, the area looks about a million times better and I felt healthy and strong the whole time I was out there. It wasn’t as though I felt tired and pushed through the exhaustion, I actually felt strong the whole time.  Then I started to get nervous. Six plus hours of manual labor was probably over-doing it. I was so high on adrenaline and enthused by the progress that it never once occurred to me that I should stop. Oops.

I showered, did my night treatments and got into bed. Then I felt it. A sore throat. I figured it was probably from allergies but it still scared me a little bit. And my muscles were starting to talk to me about what I had put them through. Apparently my legs were opposed to hours of crouching and my neck and back had a few things to say about the weed pulling and rock prying. What was I thinking?! Oh right, I wasn’t thinking. I let myself be controlled by the possibilities and the progress I was making. I was caught up in my clean window perspective and I forgot all about my limitations.

This isn’t the first time this has happened, but it’s the first time in a while. I’ve been much more attentive to my body lately as my CF has pushed its way to the forefront of my life. When I was younger and healthier, this was the way I completed home projects all the time.  I would work and work like a crazy person because I love to get things done. I’m impatient for the end result. I would still operate this way if I could. I think subconsciously I want to forget that I have cystic fibrosis and live life the way I used to sometimes, even if it’s just for an afternoon. The girl I am in my head often doesn’t match the girl I am in a body affected by CF.

The next day was July 4th and I felt surprisingly fine through our family barbecue and pool party. I was tired, but a normal level of tired. July 5th dawned and it hit me. I was so sore that every movement hurt and all day long I was sooo sluggish.

It’s been a week now and I’m fully recovered from that afternoon. I know I need to pay closer attention to my body, but I can’t say I regret what I did. The east side of the house looks great, and I feel proud to have fixed it up all on my own. Forgetting all about my cystic fibrosis for an afternoon–that was pretty great too. It was nice to just live, and work, and accomplish, and be. It was nice to ignore the can’ts and don’ts and shouldn’ts. It was great to experience that energy and stamina again, however short-term. Sometimes I feel like CF has taken away so much of my vitality. But last weekend I was reminded that it’s still there, even if it’s been subdued by this disease. It was good to remember that although my body is weak at times, there’s still plenty of strength there too.  That’s what a clean window perspective will do.

Conversations with Lucas, Part 3

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Having a four year old means that we spend a lot of time hiding smiles and laughs. I’m actually pretty terrible at hiding them (and Jaime is too). Thankfully, Lucas doesn’t get upset when we laugh at the adorable things he says. I hope it stays that way, because I remember distinctly how offended I was when my parents or sisters would laugh at me when I was around his age. Hearing that I was cute didn’t pacify me. As the youngest of six girls, I just wanted to be taken seriously. Lucas is more of a ham then I was, though, and he enjoys getting a laugh out of us, even if he’s not sure what’s funny.

Here are a few recent conversations that have gotten a smile or a laugh:

L: Mommy, some bees like wood.

B: Oh really? Did you learn about that at school? [They’ve been studying insects.]

L: What?!?!! No!!!  There’s no learning at my school!!

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L: Mommy, come see my farm! Do you want to play with me?

B: Sure!

L:  Okay. Well, the chickens have been fed, the horses have been hayed, the dogs have been petted, the sheep have been wooled, the cows have been milked, and the silo has been filled to the top with corn.  I did all that because I’m Farmer Lucas.

B: Okay, what do I do?

L: Nothing, you’re the wife.

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L: Mommy, how many grapes did you give me?

B: I gave you ten grapes.

L: When I eat one I’ll have nine!  Then eight, then seven, then six, then five….

B: Then four, three, two, one, then zero!

L: “Blast off” comes after one Mommy, not zero.

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L: Mommy, I’m bladdish.

B: Bladdish?  What’s bladdish?

L: It’s a feeling. It’s a mad kind of jealous.

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L: Look Mommy, I’m drawing the earth!

B: That looks great!

L: Now I’m drawing heaven.  Where Jesus is, and God. And the kingdom. And the Lord.

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B: Hey Sweetheart, what are you playing?

L: I’m a rocket ship!  I take people to Chicago, to the ocean, and to IKEA.

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L: Mommy, Daddy’s name is Jaime but I don’t call him that. I just call him two things.

B: Dad and Daddy?

L: No, Daddy and Bearsie.

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L: Mommy, I love farms.

B: I know you do, Baby.

L: Cows give us milk, sheep give us wool, chickens give us eggs, goats give us cheese, ducks give us feathers, geese give us…[thinks for a minute]…poop. And horses give us beans.

L:  Mommy, why are you laughing?

*

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So many good vibes from this boy 🙂 

 

 

Spring, Steroids, Streams & Sticks

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Yesterday morning I told Lucas it was the first day of spring. “It’s SPRING?  I’m so excited!” he exclaimed and started dancing all around my bedroom. “Daddy, Daddy, it’s SPRING!” he yelled. He climbed up on my bed and peeked out the window.  “Can we plant our flowers today?” he asked. “It looks warm!”

We’re going to have to wait another month or two to plant our flowers here in Michigan.  It was not warm yesterday in spite of the sunshine (unless you consider the 30s and 40s warm). Regardless, I share Lucas’s enthusiasm for spring! He’s most excited about flowers and veggies.  I’m most excited for cold and flu season to end.

I was hoping I’d be feeling normal by now and through the adjustment phase that I experienced after getting off antibiotic and steroid treatment for an infection I had in February. Unfortunately, things never improved, and after about 10 days of feeling sick, I landed back at the doctor last Thursday. I had been having frequent coughing fits, was sleeping poorly, and was feeling exhausted, sore, and short of breath most of the time. My FEV1 was down only one point from where it was at my February appointment, but in Feburary it was down six points due to the infection I had. So although it was a big relief to see it hadn’t plummeted any further, it’s not where it should be. I didn’t have signs of a secondary infection, and the doctor concluded that the main culprit for my troubles was my asthma, likely kicked up by yet another virus. Friday I started back on steroids to address the asthma.  My body will heal from the virus on its own, but that will take some time.

I’m not sure yet how long I will be on steroids. I’ve definitely seen improvement but still have a ways to go. My doctor is having me check in with him regularly and is adjusting my dosage based on my progress. I’m looking foward to feeling like me again soon. Hopefully by the time it’s warm enough to plant our gardens I’ll be healthy and strong and cold and flu season and all this illness will be a distant memory.

Steroids are a great blessing when you need them but have lots of side effects. Thankfully the worst side effects aren’t a problem when you take them for a short period of time. I do, however, have trouble falling asleep at a decent time at night and alternate between moments of having jittery energy and periods where an exhaustion washes over me and my brain feels foggy. I felt tired this weekend so we played quietly at home. Lucas is very into nature.  Currently forests and bodies of water along with their native animals are of greatest interest to him.  He created a forest out of a tree house toy and played with that for a while at home. When he was done being calm and quiet, Jaime took him out in search of a real forest and stream adventure and left me at home to rest.

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Lucas’s forest tree house. He has created an imaginary animal called the Sharp Pig that lives in dens and under fallen trees in the forest (in case the pink pig was confusing).

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A real fallen tree!

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He was probably digging for a Bumpadoe…another imaginary animal which he informs us is a furry amphibian.

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Sticks, streams, dirt…a little boy’s paradise!

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Joy!

I was sad to miss the adventure but hearing about it and seeing these pictures brought me lots of joy. Lucas also brought me a stick from the forest so I wouldn’t be completely left out. It’s funny how a soggy, dirty old stick can be a precious, heart-warming gift. I’m thankful he thinks of me and wants to include me even when I’m sidelined by my health. I’m hoping with the arrival of spring and the help of these steroids, next time I’ll be digging in the mud right along with my boys 🙂

That night,  Jaime was snuggling in bed with Lucas as he was falling asleep. At one point Lucas rolled over and whispered, “Daddy, I’m really happy.” Then he closed his eyes and went to sleep. Oh the beauty of joy mixed with peace and contentment! It blessed me to hear those words from my four year old. These frequent illnesses have been challenging for all of us, but there’s a hope that fills our hearts and we are reminded over and over that we have so many things to be grateful for. Today I’m thankful for joy, peace, and contentment in the midst of struggle.

And for spring, steriods, streams and sticks 🙂

The Adjustment Phase

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It’s unseasonably warm and sunny here today, a glorious 66 degrees. I adore the hope of spring with its promise of new life to come, colors warming their way back into the landscape, balmy air to breathe and a plethora of activities beckoning me out of doors.

I’m especially grateful for this weather today as I’ve entered what I like to call the adjustment phase.  A little over a week ago I finished up a three week round of antibiotics, and a few days later wrapped up my 12 day steroid burst. In theory it’s great to be off those medications. In practice, it’s rough being off those medications. For otherwise healthy people, taking antibiotics cures the infection in your body and when you complete your course, the infection is gone and normal life commences. For me, antibiotics suppress the bacteria that has taken up permanent residence in my lungs allowing me to feel much better, but the infection is never 100% eradicated. I remember a lung culture that was taken after my first round of IV antibioitcs last spring. The antibiotics did such a great job that the only thing that grew out was what the report termed a “rare” or small amount of a common bacteria called Staphylococcus (responsible for the well known Staph infection). The big guns did their job.  One month later, although I wasn’t acutely ill, my lung culture showed numerous amounts of staph and psuedomonas, the other bacteria that grows up in my lungs most of the time. Because of my cystic fibrosis, the conditions in my lungs are such that bacteria thrives there and I cannot ever be completely rid of it.

I have noticed as my condition has progessed, that five days to a week after I go off antibiotics, I go into a phase of increased struggle. The bacteria in my lungs are returning to their chronic levels.  My chronic cough returns, my congestion levels rise, and my chest, back, and abdominal muscles become tight and sore since they seized the opportunity to atrophy with decreased use during treatment (who can blame them!). I often have several days where I feel chilled and feverish even though my body temperature remains normal. I think my body initially puts forward a strong immune response as it readjusts to life without the drugs. It is difficult because I go from feeling better than normal while on antibiotics to feeling worse than normal within a few days as my body finds its footing.  The first week following antibiotics and steroids often still includes some of the side effects of the drugs as well such as poor sleep and stomach issues. It’s hard to deal with those side effects without having the benefit of the drugs.

I always know that this adjustment phase is coming, but it is distressing every time. It is hard physically, but it is also hard emotionally. I get to enjoy an easier, more normal life while on antibiotics and steroids, and that is such a blessing.  We had some really great times the last few weeks–sledding and snow play with Lucas, a family day at the zoo, some messy hikes in the woods, and an uncharacteristically clean and organized house. I had a couple of great runs on the treadmill where I felt strong and invigorated. I felt less restraint, more energy, and more freedom. It is hard to come off those highs and get reaquainted with the lows. It’s hard to trade that feeling of freedom for resistance and restriction.

Today as the sun was shining down on me, the light and warmth felt healing. It reminded me of a verse from Malachi.

But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture. Malachi 4:2

The Sun of Righteousness refers to Jesus, and his wings refer to the fringe of his robe. Jewish people had fringes on their robes which identified them as belonging to God, a representation of their identity. I just read the story of the woman who had suffered for 12 years with a chronic bleeding condition who reached out to touch the fringe of Jesus’s robe and was instantly healed. She seemed to understand that because of his identity as the Son of God, He had the power to heal her, and so she touched what represented who He was. Reading stories like that makes me long for healing, and although I cannot physically touch Jesus’s robe, I often reach out to Him and ask Him to heal me.

And Jesus always answers me with a measure of healing, whether physical, emotional, or spiritual. There are days I breathe easier. There are moments where I feel supernatural strength. There are times where my heart is secure and steadfast against all odds. There are moments when fears and worries flee and I am filled with peace, and times when my trust in Him and His perfect plan are renewed. I know that some day I will be healed completely. It may not be until I reach heaven, but the chains of this disease are temporary. Jesus has brought me through valleys, He has allowed me to walk on heights, He has protected and sustained me and allowed me to say, even on the darkest days, and even during this pesky adjustment phase, “it is well with my soul.”

Ventura Family-65

“But as for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2