40

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June 30, 1978.

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

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June 30, 1978. Baby Betsy.

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

I could go on.

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

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

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

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

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

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Team #Breathe4Betsy

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

Just like Saturday. Happy Birthday, Betsy!

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June 30, 2018. Betsy & her sisters.

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A Year in Review

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Look to the Lord and his strength, seek his face always. Remember the wonders he has done.

~I Chronicles 16:11-12a

Happy Holidays a little late! I’m sorry I’ve been absent from my blog for so long. Jaime told me I’d better get something published before people started to worry about me! My writing has gotten pushed to the back burner. It’s not as though life is busier than before, it’s just been different since school started in the fall. Somehow when my routines and responsibilities got rearranged, the blog got pushed out of the mix. I miss writing here, so stick with me. I’ll be back in 2018.

Last night Jaime and I were talking about the highlights and low points of 2017. I like reminiscing about the past year before I venture into the new one. It’s fun to remember and relive the happy times and good to note that we did, in fact, survive our challenges. And there were a few–Jaime had a really tough, busy stretch at work for the first few months. I had a rough summer health-wise and had to have both IV antibiotics as well as oral antibiotics and steroids during what are usually my healthiest months of the year. A bunch of my hair fell out (gotta love side effects). I lost some lung function. I had back problems and spent months in therapy. We had to cancel a trip to Chicago in the early spring because of the Jaime’s work situation and we missed a planned vacation to Tennessee in July due to my illness. I woke up with pink eye on Christmas Day (apparently I was on Santa’s naughty list) and I am on antibiotics now for a virus gone rogue. Those were some of the low points.

Ah, but the highlights! There were many more of those. The tooth fairy made two appearances here and one at Grandma’s which was a fun first for us and Lucas. Lucas played on his first two soccer teams with coach Dad, and so far has not broken anything  in spite of all the soccer balls he kicks and scoops and does who-knows-what-else with around the house. Jaime’s mom courageously fought cancer with surgery, chemo, and radiation and was given a clean bill of health. We participated in the Great Strides walk for CF in May and were showered with support. We had several gatherings with Jaime’s family and visits from my family. We traveled to West Michigan for beach time and reunions. Lucas, Jaime, and Grandpa Ventura took a trip to Washington D.C. to see Manchester United play. We went to Wild Kratts live and Detroit City FC games. We hung out with our friends. Lucas did great in Young Fives and he transitioned smoothly into Kindergarten.

I realize at this point I might be overdoing it, but I hope you’ll allow me to share a few more highlights. 🙂

Lucas helped me brush up on my geography skills and he learned to ride a two-wheeled pedal bike. There were ten new deer signs installed within a few miles of our home which was mega exciting for our resident six-year-old. We did some nice landscaping in our backyard and my garden was extra beautiful. I had a healthy fall and even got through my first virus in November without needing antibiotics.  My back issues improved and I was able to start jogging again. I got to go on two field trips with Lucas and his classmates and Jaime went to two in-class parties. We both got to see him read a self-authored book to his class about what he was thankful for, and we both made it onto the book. Lucas got interested in Legos and I’m living vicariously through him as they were not marketed to girls back in my day. (I didn’t know what I was missing.)

We laughed a lot this year and experienced much joy. We cried a bit too, and faced some tough disappointments. But our consensus is that we have a really great life and we’re extremely thankful to God for all the blessings and the challenges and the various facets that make it ours. God has always been faithful to us and we know that will never change.

And so we look forward to whatever 2018 will bring.  Jaime and I will both turn 40 which is shocking (and somewhat disturbing). It’s quite a milestone from cystic fibrosis perspective though, so I think we’ll celebrate rather than mourn (any black balloons that show up on my doorstep will be immediately popped). I’m sure there will be more soccer and Legos and more visits from the tooth fairy. There will be good times with family and friends. There will be struggles. I always feel some nervousness as I look out toward the future, wondering what is coming my way. I can’t quite see how certain things in my life are going to work out. But it’s not my job to know. I don’t need to be afraid because God has promised never to leave me, always to help and strengthen me, and He’s promised to finish the work He has begun in me. And so with a nod toward last year’s challenges and a heart brimming with thankfulness for the blessings, we’re stepping forward into a new year.

May your new year be full of blessings, may you know God’s love, and may you take hold of His strength during the tough times.

Happy New Year from our family to yours!

Give thanks to the Lord for he is good, his love endures forever.

~I Chronicles 16:34

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

 

 

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.