Gone But Never Forgotten

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This past weekend we drove to Western Michigan. We were attempting to enjoy our annual beach weekend, although the weather had other plans.  Luckily we got one really nice evening in at the beach before the storms rolled in.

After a dip in the lake, some soccer and a little dune climbing (for Jaime and Lucas), we arrived at my parents to spend the night. Lucas said hello and deposited a considerable amount of sand on my parents’ entry way floor before heading to their refrigerator. He wasn’t after snacks as you might suppose, he wanted to see the pictures they have displayed of our family. He loves to look at his aunts, uncles, and especially his cousins. There was a new picture up there that he noticed right away. It was a picture taken on my 40th birthday of five of the Waterloo girls.

“Aunt Dianne printed that for us so we could hang it up,” my mom explained. “I like it because I can look up there and see my daughters.”

“But not all your daughters,” Lucas replied without hesitation.

Hearing Lucas include Sheri and recognize her enduring place in our family gives me so much joy. She is gone, but not forgotten, not even by my son who has never had the pleasure of knowing her first hand.

He does know her, though. He has been asking about her a lot lately. He is piecing together her story, the story of our family, where she fits in, and where cystic fibrosis fits in. So what will I tell him? What do I want him to know about his aunt–who she was, how she lived, even how she died?

Sheri was fun, creative, smart, and resourceful. She was also stubborn (just like he is!), and very determined. She was bright and full of life, even though death so frequently tried to choke out her life. She loved a good bargain and had a knack for sniffing them out. She was an artist, a musician, a teacher, and a mentor. She loved flowers.

When she learned that she only had months to live, Sheri didn’t breathe a sigh of relief. In spite of all she had suffered and all she was suffering, she still fought. She wanted to live. She didn’t give in until the day she felt God telling her that her work was done, and then she rested until He took her.

I have learned so much from Sheri. I have learned not to wait around for a set time or life circumstance, not even wait for things to get easier, but to live life today, with all I have. There is just as much purpose and meaning in a sick day as there is in one where I go out and (figuratively) conquer the world. There will be bad days, likely bad weeks or months, maybe even bad years. But here is always joy in the midst of pain, there is always goodness and grace to be found, and the sweetest victories come after a hard fight. She used to say that God never wastes our pain, but uses it for our good and for His glory.

I have learned not to put such high esteem on physical wellness. Sheri was not physically healthy by almost any standard, but she had a vibrant, healthy soul. Her life was shortened by her disease, but no one who knew her could argue that it wasn’t full, meaningful and well-lived. She took each day God gave her and she made it count.

I ran across a quote from theologian Jurgen Moltman in Philip Yancey’s book Where is God When it Hurts which resonated with me. Yancey was discussing our tendency to wish for and idolize a physically healthy life–one that is characterized by the ability to work and to enjoy life without being weighed down by illness or disability. He quotes Moltman who says,

…true health is something quite different. True health is the strength to live, the strength to suffer, and the strength to die. Health is not a condition of my body; it is the power of my soul to cope with the varying condition of that body. (p.190)

By this definition Sheri was healthy. She wasn’t perfect, but she weathered the many storms of her life with resilience and grace. And to the very end, the strength and beauty of her soul shone through.

She is gone, but never forgotten. Aspects of Sheri live on within me, my sisters, my parents, and maybe even my son who is getting to know her now.

We all love you, Sheri. We miss you. You will never cease to be part of us. We hold you close until we meet again.

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ALL the Waterloo girls, circa 1983.

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Sheri Leigh Van Bruggen, September 26, 1968 – September 4, 2004

 

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SEVEN Years Old

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Happy birthday to our rapidly growing boy! True to my predictions, six was a great age, and we’re ready to see what seven holds. Lucas is more independent but still likes to spend lots of time with me and his dad. He has become more social this year (thanks, school!) and has told me several times this summer that he needs some kids to play with. I’m glad he’s expanding his social circle, but I hope to stay in the mix for a while yet!

Here are his current favorites:

  • Color: still ORANGE! 
  • Food: Chicken quesadillas
  • Song: Beach Bummer by AC Newman
  • Sport: All soccer all the time!
  • Animal: I think cats have officially edged out chickens although he still loves chickens. He just really REALLY wants an orange cat. (Don’t tell our dads, but he might just get one someday).
  • Book: Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst (I mean, who doesn’t like to laugh at poor Alexander?!) He also loves Frog and Toad books written by Arnold Lobel.
  • Movie: The Lego Batman Movie

His biggest interest at the moment is Lego DC super heroes and the Justice League. The Flash is his favorite hero followed closely by Batman, Batman’s team and Wonder Woman. He spends hours in his room playing with his Legos and has amassed a rather disturbingly large collection in a short time. He makes original movies with the heros and villains and after rehearsing and perfecting them, performs them for us. When he makes a new movie, he designs a DVD case for it complete with a photo of the action to come on the front and a summary on the back.

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DVD case for “Batman versus the Rogues”

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Disc plus bonus disc

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Back cover summary: This is a wonderful day in the USA. Now the clown prince of crime, the Joker, broke into the Planet. As the Joker works with Bane, Harley Quinn, Trickster, Darkseid, Moth Man, and Catwoman, will Batman and Robin, Batgirl and Cyborg fix it?

He recently recreated a Lego Batman game he plays on Jaime’s phone with his Legos. It included obstacles and battles and earning coins to “unlock” new super heroes for the game. He wrote out a clue card for each villain with tips to defeat them. I thought it was such a wonderful idea, until I realized that executing his plan would require me to make 13 small white boxes to conceal unearned super heroes. That’s a lot of small white boxes and a lot of folding. A lot.

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Lucas also made up his own team of super heroes.  That group is called Team Betsy and I am the main hero (*blush).  He made himself along with Jaime and me, and then each one of my sisters and my parents by mixing and matching Lego minifigures! My mom is styling in her bright pink pants and red cape and my dad has some sweet bat wings! It is a special kind of awesome 🙂 I’ve seen one “movie” called “The Delamission of Betsy.” And no, I don’t know what a delamission is, even post movie.  We battled some pretty intense villains but made it through. Go Team Betsy!

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Grandma and Grandpa Waterloo as super heroes!

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Blond Jaime, Lucas and me. (I’m a little drab…I might want to switch outfits with my mom!)

Lucas has taken to writing stories down in his journal, too. Many of them are from the action and adventure genre although there’s a few personal narratives in there as well. Like a true writer he starts stories and then gets a new idea and skips some pages and starts another. There are several completed stories in there but I’m still waiting on the conclusion of our Chicago trip personal narrative from March.  Perhaps I shouldn’t hold my breath. I bought him a new journal the other day. He was like, “Ooooooh, fresh pages!” He prefers to do all his writing with an orange mechanical pencil, 0.9 lead thickness, with a good eraser.

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Lucas still wants to be a farmer but overall his interest in farms has diminished (*sniff). I think this is largely due to being in school full-time and the resulting decrease in visits to our local petting farm.  We put his toy farm in the basement a few months ago but he did gets parts of it back out this summer so he could restart his barnyard soccer leagues. A few of the animals got new names (such as Gretl the cat who is a spitting imagine of his cousin-cat named Gretl). Thankfully we still get to enjoy performances from some of the old favorites: Henny, Goaters, Donkers, Peacocky, and Hirman.

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The animals are facing off at the farm!

Soccer continues to be a big part of Lucas’s life, and not only at his toy farm. He loves to attend Detroit City FC games with Jaime and his buddy Greyson.

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DCFC’s biggest fans.

This year he got to do a walkout with his favorite player Shawn Lawson which was so exciting! Shawn is such an awesome guy and pays extra attention to Lucas which has been so special. It’s pretty amazing to have a hero who is accessible, knows your name, and goes out of his way to acknowledge you!

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Lucas and Shawn

Lucas loves playing soccer on his King Cobras Rec and Ed team and wants Jaime to coach his team forever. It’s been fun to see him develop soccer skills but also to work on broader skills like determination, perseverance, and confidence.

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King Cobras!

Lucas still loves deer signs, especially when we unexpectedly find new ones! He is a notorious night owl. We have had a loose bedtime of 9:00pm for the summer but we can often still hear him knocking around in his room after 11:00. He despises getting up early. He likes reading, riding his bike, and being in perpetual motion.  He enjoys a good potty-related joke. He is stubborn, creative and affectionate. He is introverted but loves to spend time with family and friends. He’s sweet and loving and occasionally spices things up with an impressive outburst of temper. He is protective and caring and loves God. He asks difficult, thoughtful questions. You know he’s comfortable when he breaks into song or talks incessantly (it happens!). Lucas is the most wonderful gift. We love him so much!

Happy 7th Birthday, Sweet Baby Boy!

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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.

Continued Conversations with Lucas

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Love and Laughter!

Expressions of love:

L: Mommy, this is my favorite place on your cheek to kiss you.

B: Aww, thanks.

L: It’s soft and cute and it smells so good, like a rose!

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L: Mommy, I love you and Daddy so much!

B: We love you too, Baby!

L: But I love you sooo much. I love you more than soccer! And superheros! And even more than kitties!!

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L: Mommy, when I’m older and live with my wife, you can visit me every day.

B: Can I get that in writing?

L: Sure, Mom, no problem.

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B: Can I call you “Cute Cheeks?”

L: Well, sometimes.

B: When?

L: Maybe just at home because otherwise it might be kind of embarrassing. Also, not if someone is here for dinner.

Boys will be boys:

L: Here you go, Mommy [puts a tiny, unidentifiable object in my hand.]

B: Um…thanks? What is that?

L: I don’t know. I found it in my pants.

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L: [whispering]. Hey Daddy…

J: What?

L/J: [Loud whispering and peals of laughter]

L: Shhhh! Don’t tell Mommy! She thinks poo-poo is gross and not funny!

A window into the soul of an introvert:

L: Mom, kids are a lot easier to meet than grownups.

B: Oh yeah? Why is that?

L: Grownups get really excited to meet kids. It’s a lot to handle. And they’re big. Kids are much smaller and less excited so they’re easier to meet.

Can someone else answer these questions?

L: Mom, does God know the future?

B: Yes, I think he does. [Additional explanation attempted].

L: Oh. Mom, are there bad guys in heaven?

B: Well…

L: Also, do people who don’t know God go to heaven?

B: [Gives a woefully inadequate answer]

L: How can God and Jesus be the same person?

B: [Tries to explain with a metaphor]

L: And Mom, one more thing..

B: [Bracing myself…]

L: Can you imagine if there was a banana peel on a big patch of ice? It would be soooo slippery!! HAHAHAHAHA!

Random Funny-ness:

L: Mom, summer is my favorite season. What about you?

B: Summer is my favorite season too!

L: After summer I like spring best, but fall is only my third favorite, because it’s a little droopy.

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L: I’m going to tickle Daddy’s ear ball.

B: Do you mean earlobe?

L: No, I call it an ear ball.

B: Well I call it an earlobe. Because that’s what it is.

L: No! Mom! Pretend you don’t want to and call it an ear ball, because that’s what it looks like. Trust me, it’s better.

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J: Uncle Greg almost missed his plane home! I fell back asleep after my alarm went off and he forgot to set one.

L: Oh man, if Uncle Greg missed his plane and stayed in Florida, Aunt Tina would have to get a new husband. And that’s expensive!

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Four Years!

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An old picture popped up on Facebook today, reminding me that I started this blog exactly four years ago! Jaime had surprised Lucas and me by coming home from work early. He and Lucas set off for an adventure at the Hands On Museum so I could have a free afternoon. I had been considering blogging for several months, but hadn’t quite mustered up the courage to get started. Lucas was two at the time, so free hours were hard to come by.  I decided I’d better seize the opportunity and I got the blog up and running while the boys were gone. Jaime joined me as a writer about 10 months after I started the blog and combined we’ve written 124 posts to date.

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Heading out to catch the bus to the museum on April 25, 2014.

This morning Jaime and I had a little adventure. Today was Lucas’s star student day at school.  Lucas made a poster this weekend sharing some things about himself, and Jaime and I were invited in to see him present his poster and to tell the class about a family tradition we have.

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Lucas’s poster.

Lucas, preferring to stay out of the spotlight, made his presentation as brief as possible 😉 . It was still lots of fun to see!

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Jaime and I shared about how soccer is a big part of our family, starting with Jaime’s dad growing up in Peru, and trickling down through Jaime to Lucas. After our presentation, we headed to one of our favorite local joints so I could get a coffee and Jaime could have lunch.  When you eat breakfast at 10:30, lunch at 11:30 just doesn’t make sense, but as you know, I never say no to coffee!

 

Right now, I’m sitting here looking out the window, in the same spot where I started this blog four years ago. That day I got to see Jaime and Lucas out there hand in hand.  Today it’s the FedEx guy and some well-fed squirrels. I have more free hours nowadays which is nice, but we have far less time for adventures with Lucas which we greatly miss. My health has declined on paper, yet my life is still just as full and happy as it was four years ago. Some things are easier, like maintaining a heathy body weight, and some things are harder, like exercising. There have been ups and downs along the way, but through it all, God has been faithful.  My heart is still filled with the bright hope I felt on that first day which led to the title of this blog.

Thank you for following along with me these four years! I’ve found healing and hope in expressing my thoughts during the challenging times.  I’ve found joy in sharing the triumphs and blessings as well as the everyday experiences that make up my life. I’ve found community as readers have reached out with love and encouragement and shared their own experiences. Thank you for allowing me to share my life with you, and for sharing yours with me.

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Then…

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And now.

First photo by Wendy Martin Photography, second by Jess Marie Photography.

 

Great Strides 2018

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We’ve got another cold and wet day today. Although I’m longing for warmer weather, unfortunately these temperatures aren’t outside the norm for spring in Michigan. But here’s something good…spring means that Great Strides is coming up! That’s something that always warms my heart.

Here is a write up about the walk from the official Great Strides page:

On the 30th anniversary of Great Strides – the Cystic Fibrosis Foundation’s largest national fundraising event – we celebrate the many milestones we have achieved thanks to our supporters. Each year, more than 125,000 people participate in over 400 walks across the country to support the Foundation’s mission to cure cystic fibrosis and raise awareness about this rare, genetic, life-shortening disease that makes it difficult to breathe.  Their dedication over the past 30 years has resulted in tremendous progress.

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

While we have come so far, we still have so much work to do. The lives of people with this disease are still cut far too short.

Last year our team raised over $4000 and we hope to match or exceed that amount this year! Please consider joining our efforts in some way. Our walk this year is at Washtenaw Community College on Saturday, May 12th at 11:00am.  To join our team, visit the Breathe4Betsy team page. If you’re not local but would still like to be a team member, you can join as a virtual walker and raise money for the team. If you’d like to support our fundraising efforts, please visit our personal pages ( JaimeBetsy, and Lucas). You can simply show up and walk with us as well!

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Come walk with us!

It’s hard to describe what it feels like to be joined by family and friends in these efforts. My spirits are lifted and I’m reminded that in spite of the many challenges this disease brings into my life, it also affords me blessings. One of these blessings is experiencing the great love and support of so many wonderful people. I am truly grateful!

Coffee & Change

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I love coffee. It’s just so good! I’m one of those people who starts looking forward to my morning cup when I’m heading to bed the night before. I drink my coffee after my routine of breathing treatments and the physical and respiratory therapy I have to do to keep my CF-self functioning. It feels like a reward for getting through the less pleasant parts of the morning.

I love everything about coffee–the smell, the taste, the warmth, and the deep, rich color. I even like the sounds my coffee pot makes while the coffee is brewing. I find them oddly comforting. Those of you who love coffee are nodding your head and saying, “Mmm-hmmm,” right now, aren’t you? And the rest of you probably think I’m a little crazy. 🙂

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I love coffee memes!

This morning as I was drinking my strong, black brew, I was thinking about how coffee never changes. It’s one of those things I can count on each day. It’s a homey comfort and a fixed part my morning. It’s nice to have simple pleasures like coffee to ground me (no pun intended 😉 ).

In another area of my life, I’m in a period of change. Lucas is off to school full-time now, and beyond that, he’s becoming increasingly independent even when he is home. He demanded so much of my time and attention as a baby, toddler, and preschooler. He was a child who needed a lot of closeness and a great deal of attention to feel safe and comfortable in the world. Sometimes it worried me and sometimes Jaime and I both grew weary of it, but we felt strongly that his needs were legitimate and we should do our best to meet them. For five years, taking care of Lucas consumed a great deal of my time and energy. We learned early on with Lucas that developmentally, he did things in his own time. He didn’t always follow the same trajectory as other kids, but once he was ready for a particular milestone, it was as if a switch would flip, and all of a sudden he would be there.

This fall, the independence switch flipped. Suddenly he was comfortable (enough) in big, noisy groups. He was able to handle the chaos of a crowded school. He was happy to play independently for long stretches without having me within his sight. I was so busy with various things this fall that I didn’t feel the full impact of these changes, but I’m feeling them now. With the formidable germs that are on the loose this season, I’ve been keeping close to home, and no matter how many tasks I busy myself with, I’m feeling the emptiness of the house in a new way.

I was noticing last night that sometimes Lucas resists changes, too. Our treadmill is broken and Jaime and I were discussing what we might do if it can’t be fixed. Lucas told us that he was sad to think that we might have to get a different one, and hoped we could find the exact same one because he loves it so much. (That makes one of us that loves the treadmill!) It made me smile. I mean, Lucas obviously never uses it, but somehow he feels attached to it and doesn’t want to see it go. Maybe all those hours he spent down there in the basement with me while I walked or jogged on it are stuck in his memory. Maybe part of him doesn’t want to see those days over and done with either.

It’s hard to let go of the past sometimes. I longed for more freedom in the most intense years of Lucas’s early life, but now it almost feels as though I have too much. I’m not quite sure where to go from here. The abruptness of the change has left me feeling a little lost.

It’s comforting to know that God’s promises never change. Even as I’m adjusting to a different set of circumstances, I know that God has a purpose and a plan for me. James 1:17 says, “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” We put the first part of that verse on Lucas’s birth announcement.

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Lucas was and is God’s perfect gift to us, and whatever God has in mind for me now that Lucas’s demands are lessening, that will be a perfect gift too. My job is to continue to trust God in the face of these changes. It doesn’t take me long to get anxious and fearful once I start trying to figure out my future. Peace comes from leaving it in God’s hands and knowing that he will provide for me no matter what comes, or doesn’t come. He will never leave me, and he will give strength for each new task. His plans are for good and not for evil, and he has promised me a hope and a future. Those wonderful promises are even more comforting than my morning coffee. 🙂

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photo by Jess Marie Photography.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~Romans 15:13