Nine Years Old


Today Lucas is nine years old. Nine on the 9th! His golden birthday. Lucas was only two and a half when I started this blog. Where has the time gone?? This past year was a good one for Lucas, although it has been an odd year with the pandemic. Thankfully he has continued to grow and thrive, even in these extraordinary times. This morning we headed to Kensington Metro Park, one of Lucas’s favorite destinations, for a picnic. During the car ride, I told him that I write a blog post about him every year and asked what he’d like me to say. Here are the things about himself that he wanted to include:


  • Color: Yes, still orange!
  • Song: Butterfly by Twin Peaks
  • Top two animals: Cats and coyotes
  • Book: The Hobbit by J.R.R. Tolkien
  • Sport: Soccer, naturally! 🙂
  • Foods: Quesadillas and homemade breadsticks
  • Snack: Fruit snacks
  • T.V. show: Wild Kratts
  • Movie: The Hobbit: The Desolation of Smaug
  • Fictional Characters: BB8 from Star Wars, Aslan from The Chronicles of Narnia, and Gandalf from The Hobbit


  • Little Baby Bum. (This was a show that Alena used to watch. It has nursery rhymes and other learning songs geared towards babies and toddlers and Lucas HATED it. He is much happier now that Alena has switched to Sesame Street.)
  • Candy
  • Getting his nails clipped
  • Alena destroying the scenes he sets up when he plays

Lucas’s most enduring interest has been animals. He has amassed a large collection of animal figures over the years and he plays with them almost daily. This year he spent a lot of time doing “Who Would Win?” battles with various animals. He loves nature shows, Wild Kratts, and making us feel ignorant with this vast animal knowledge.

An epic battle between a great horned owl and….another animal hidden by Lucas’s hand. Alena can’t wait to see who will be champion.

He is genuinely excited to see any animal in its natural habitat. He will yell, “Mom, come quick!” I’ll run into the other room expecting to see a bear in our yard, and he’ll excitedly point out the window at a squirrel (as if he hasn’t seen hundreds in his lifetime!). He loves the zoo but his favorite is to go for a walk in the woods and on trails at parks to look for critters and animal dens. His favorite bird is a blue heron and he was thrilled to find one in a pond just a few miles from our house, hunting for fish. We visit regularly now and he has named it Blue Fisher.

Visiting Blue Fisher (you can faintly see the blue heron just to the left of Lucas’s head)
Trail buddies!

Lucas still greatly enjoys writing and drawing. One of his biggest laments when he found out he couldn’t go back to school this spring, was that he wouldn’t be able to retrieve his quiet time book, a blank book that he filled with writing and drawing during free time at school. Luckily I was able to find a similar book for him to use at home and he’s filled up two already. He also wrote his own Magic Tree House book (entitled The Deed of the Dodo) as a birthday gift for a friend this summer and learned to draw a bunch of Star Wars characters from a how-to book I found. He spent many happy hours making his own Star Wars encyclopedia on PowerPoint during the strictest days of our COVID quarantine.

Star Wars drawings…
…and an encyclopedia!

Speaking of Star Wars, he got very interested in those movies this past fall. He watched the eight movies that were out before the holidays and then saw The Rise of Skywalker in the theater during his holiday break. After getting Star Wars figures for Christmas, he remade and performed all nine movies for us including some aspects of the original stories and adding his own details and variations. Once we were quarantined at home in March, he and Jaime built a plethora of the space ships and other vehicles by repurposing Lego bricks that Lucas had from other sets. I was impressed by what they came up with (and very happy not to have to buy a bunch of new sets).

Homemade x-wing fighter!

He loves fantasy stories and fell in love with The Hobbit after reading it this summer. I suspect we may be treated to a Lucas remake of that epic tale at some point too.

Lucas enjoyed soccer again this year. In the fall he played for King Cobras, his school team, and Michigan Tigers which is the club where Jaime coaches. He got to have Coach Dad for both teams! He continued to play indoors over the winter but the spring season got canceled. This summer he has started up again with his Tigers team, however, it looks much different as he is only able to do training exercises with his team in a strict, socially distanced, outdoor environment. There are no player interactions, scrimmages or games but he is still thrilled to be back on the field!

Michigan Tigers in Lucas’s favorite orange jersey!

And of course, now that he is a big brother, Lucas spends a lot of time with his little sister. It’s been fun to watch their relationship evolve from wide-eyed watching to all-out playing and tumbling around together. No one can make Alena squeal and laugh more than big brother! He reads to her, chases her around and wrestles with her, and keeps an eye on her for me if I need half a second to complete a task. He is very loving and attentive and only rarely gets mad at her when she steals his toys, drinks out of his water bottle, pushes her way into whatever he’s trying to do alone, or any other number of pesky little sister antics she pulls. She is lucky to have him!

All of these hobbies and activities are part of Lucas, but what we love most is his heart. He is sweet and considerate. He is loving and kind. Nearly every time we make a meal he likes, he tells us that it is the best we have ever made. He asks us how our day is going and listens to our response. He notices if we’re sad and tries to comfort us. He has already promised that when we get old he will stop by as often and he can and that he will take good care of us. He really is a gem and we love him so much!

Happy Birthday to our boy


Alena Abigail – One Year Old


Baby girl is one year old today! She is such a gift. It’s been a challenging year in many ways, and also such a wonderful and memorable one! At the end of this first year we have a loving, proud big brother, a bright-eyed, energetic baby girl, and two extremely exhausted parents. But we wouldn’t trade our lives for any other!

Alena is growing and changing rapidly, so this post will be a small snapshot of this moment in time. What can I tell you about our girl? She is full of energy! This girl is always busy and rarely still. She is also full of personality! She has strong opinions and feels very free to share them. She seems to have big emotions like her brother–lots of happy squeals and laughter and cuddles and lots of loud protests. Buckle up!

Alena loves to be out and about. If she sees anyone getting coats and shoes on, she rushes over to the door. If we ask her if she wants to go outside, she starts clapping. On any given day if she’s fussy at home, she will cheer up outside or running errands. She likes to look at people and animals and likes to check out new places. She is usually pretty friendly and will even hold out her arms and go to a stranger on occasion. She currently loves squirrels and has lots of fun watching them run around in our yard. She laughs and squeals if they peak at her around a tree trunk. Lucas used to call them “mermals” and for now, Alena calls them “pwe”. She seems to feel that one syllable is enough for most objects. (I am “Mum”, Lucas is “Baa” and Jaime is “Gah.” The only two syllable word she currently employs is “baby.”)

Heading out for a walk!

Alena detests diaper changes and likes to make it as impossible for me as she can. As soon as I lay her down she begins twisting and turning and crawling away. If I manage to pin her down she lets me know loudly that she doesn’t approve.

Alena is a climber! She started climbing around eight months old and hasn’t slowed down. If I turn my back for a second she’ll be on the low window sills in our front room, on the top of the slide in the basement, half way out of the baby tub, or in some precarious position on the stairs. She even tries to climb out of her learning stool onto the kitchen counter.

Although “Mum” is still her favorite, Alena adores Lucas and Jaime. She tries to be as close to Lucas as possible and do whatever he is doing. She does her very best to keep up with him! She watches him intently and copies what he’s doing. Much to Jaime’s delight, after watching Lucas, she has figured out that soccer balls are for kicking and has already started her training.

Working on some skills

Lucas is usually very tolerant of Alena grabbing for all his toys and pushing her way into his space. They have a special bond and she’s a lucky girl to have such a great big brother!

Alena sprints to the door when Jaime gets home from work each evening (or nowadays walks up the stairs from his basement work station). She loves to catch a ride up on his shoulders and likes to play games with him like pulling off his hat or knocking down the towers he builds. She also loves to cuddle up with Daddy at night.

Cuddle buddies

Alena’s current favorites:

Food: Macaroni and Cheese

Book: This is a three way tie between Peek A Who?, First 100 Animals, and Who’s Wearing a Hat, is it the Orange Cat?

Color: She often chooses orange just like Lucas did! We’ll see if that sticks. It would be mighty convenient since we already have all things orange!

Animal: She loves squirrels, and much to Lucas’s delight, she also adores all his toy cats and any cat that pops up in a book.

Yay kitties!

Here are month by month photos from the year:

Even though a year has passed, having Alena still feels like a dream sometimes. Thankfully it’s a dream we won’t have to wake from! There isn’t much danger of actual dreaming anyway, as she barely lets us sleep. 😉

Happy birthday sweet baby girl! We all love you far more than words could ever express.

Happy New Year! (Two Months Late)


Happy New Year! I realize it’s March but it’s the first blog post of the new year and better late than never, right? Kind of my philosophy in life if I’m being honest. Anyway, I hope your 2020 is off to a great start!
The new year started off with more good news!  Betsy has another follow up appointment with her pulmonary specialist on January 3. Her FEV1 was up again, this time to 43! That’s a 14 point gain and is nearly up to the same level as when Betsy started this blog. Nobody really new how much of an effect the Trikafta would have on her FEV1. There hadn’t been any patients in the test groups with starting FEV1 scores as low as Betsy’s. Needless to say she was thrilled. The doctor was even cautiously optimistic that she could still see more improvement, especially after she is able to resume consistent exercise.


Alena is a big fan of trikafta

Even more than the breathing test score itself, the change in Betsy’s day-to-day life is more than evident. Coughing for hours on end to start the day is a thing of the past. Betsy has been bound and determined to reclaim some of the household duties. She has implemented a new laundry system and, amazingly, we now retrieve clean clothes from our drawers rather than the laundry basket. Betsy and I are back to sharing the grocery shopping and the cooking! Last weekend, we had been toying with the idea of moving a desk up from the basement for Lucas to use. We’d get to it later, I thought. I had to run out briefly and in the 20 minutes that I was gone, she managed to carry up a desk from the basement and rearrange the furniture in the dining room. This is the kind of shenanigans Betsy would have attempted on a regular basis ten years ago. The “just do it” part of her personality had been suppressed for a long time out of necessity. No longer.


The desk. In its new home.

In other news, Alena continues to give us a run for our money! I can’t even believe I’m writing this but she will be one year old in just two weeks! She’s been trying to walk for about five months now. One of her favorite activities is grabbing the hands of whoever is closest and dragging them around the house! But just prior to her ten month birthday, she started taking solo steps and now she walks unassisted whenever the mood strikes. Alena is starting to talk as well. She says “mum” quite clearly and intentionally. Not sure where she got the British accent but there you go. She calls Lucas “baa” and if she wants to be in your arms she’ll say “up”. Nothing resembling “dadda” as yet. She calls the much beloved squirrels she sees out and about “pwa” and any human being, regardless of age, is “baby.” Alena’s sleep has been super irregular, but she’s awfully cute so we’ll call it even.


Our almost one year old!

Lucas is really enjoying second grade. He loves his teacher and has some of his best friends from school in his class. He’s a great big brother. He loves to make Alena laugh. He’s (almost) always willing to give her one of his toys or share the iPad. The other day I was trying to get dinner ready and had stuck her in the pack ‘n play. Alena found this arrangement to be suboptimal and was voicing her opinion. So Lucas climbed in with her and started to play with her. He’s also become a very big Star Wars fan over the last few months. He watched all eight movies in the lead up to the holidays just in time for us to see The Rise of Skywalker in the theater. Now he spends his free time making up his own Star Wars movies. I’m hoping one day he’ll sell the rights to his namesake George (Lucas) and use the proceeds to fund my retirement.


Siblings ❤

Well, only a short time until spring now! I’m looking forward to the warmer days and being outside. I’m also subconsciously preparing myself for all of the plans that Trikafta Betsy will undoubtedly have in mind for us to do. 😉 It’s going to be a great spring!

A New Dawn


Hi faithful readers! Thanks so very much for sticking with me! I know I’ve mostly been absent from this blog in recent months. I have an explanation for that, and here it is…

She’s adorable but she’s a lot of work 😉

I’ve started several posts but I haven’t been able to see them through. This post is my second attempt at an update regarding my health now that I’m on the new breakthrough CF medication called Trikafta. I’m having a hard time clearly communicating what has been a complex physical and emotional experience for me.

So. Where to begin?

August 31, 2019 was the first day of this journey. My doctor sent a message telling me I might be eligible to get early access to the new CF medication that was due to be FDA approved on or before March 19, 2020. Early access was being granted to some patients with low lung function. My application had not been submitted yet and the doctor was unsure if I would qualify if I was still nursing Alena. He wanted to check to see if I was willing to wean her if need be in order to get this medication early. I didn’t want to wean Alena. I didn’t want to surrender yet another positive part of my life to the demands of my disease. However, since the beginning of my pregnancy, through Alena’s birth and into the months that followed, I had been living under immense strain and my health situation felt precarious. I knew I could not turn down the opportunity to get early access to a medication that could improve my health and provide me with a measure of safety heading into the winter months where the threat of illness is at its worst. I wrote back and said if I was granted access, I would wean Alena if it was necessary.

October 4, 2019 was clinic day. My lung function was 29%. A bit disappointing! For some reason it had fallen five points after I gave birth to Alena. That didn’t make any sense to me, but regardless, it had settled there and wasn’t budging. I was just about to leave clinic when they received word that the clinic was approved for the early access program. They had me sign a consent to begin the program and said my individual participation should be decided within a week. The consent didn’t prohibit nursing but being that there are always unknowns with new medications, they suggested I wean Alena and I agreed to begin that process.

Early the next week I got a call saying that my case had been approved! We agreed that I would come in on Friday, October 18 to get the medication.

The weaning was not going well, at least not for me. I spent much of that week in tears. Alena was doing quite well with the bottles but I hadn’t taken away her favorite nursing times yet and my heart was broken. On Friday morning I woke up and knew I had to press harder about the issue. It just didn’t feel right. I emailed my doctor and asked if it would be possible to keep even a few nursing sessions. The doctor overseeing the early access program called me and we discussed the issue at length. In the end they agreed it should be safe to nurse part time. A huge weight was lifted and for the first time I started to feel real excitement about beginning the medication.

On October 18, 2019 I headed back to the clinic to do another breathing test and have an exam. My lung function was 29% again. Many people stuck their heads in the door to wish me the best as I started this journey and the excitement was palpable. “It’s a new dawn,” my doctor had said. I left there with medication in my hand and hope in my heart!

October 19, 2019. I took my very dose of Trikafta. It’s not an exaggeration to say that I felt different within 24 hours. My lungs felt less irritated and my coughing on Sunday morning seemed far less explosive. In fact I was able to nurse the baby back to sleep before my usual morning mayhem. Sunday morning and Monday I morning I coughed up my normal amount of mucus but it was looser and cleared more easily. Tuesday morning, just 72 hours after I started the medication, I coughed up only the tiniest bit of mucus, and on Wednesday, NONE. I’m not sure I can adequately explain all the ways that this one thing, alone, is life changing. Very few people other than my immediate family have witnessed what my mornings had become over the years, but I will tell you, it wasn’t pretty. In order to clear the congestion that pooled in my lungs overnight, I would spend several hours coughing. And not polite coughing—persistent, gut-wrenching, vomit-inducing, violent coughing that would leave me bent over, sweating, and gasping for air. The amount of energy I spent doing this each morning was significant. Having that congestion meant constant infection, inflammation, and illness.

Over the next days and weeks I began to notice other changes. It felt good to breathe. I was getting the oxygen I needed and my lungs were calm. I still got out of breath doing “normal” things, but I would recover so much more quickly after exerting myself. I began to be able to do more–carry the baby up and down the stairs more easily. I could carry heavy baskets of laundry. I could push the stroller up a hill. I began to notice subtle changes in the way I was thinking. More often than not, it was, I can do this! rather than, how on earth will I do this? I stopped dreading physical activities. If I was up in the night with Alena, I didn’t worry about how I’d survive the next day. I started to feel strong enough and brave enough to do things I haven’t dared to use my limited energy on for the past few years, like running errands. When I was out and about on one such day, I suddenly realized I was speed walking. I had fallen back into an old habit that used to drive Jaime crazy! He would ask me to slow down all the time, until one day I asked him to slow down. That was a moment he said he would never forget.

One night, for kicks, I decided to try and carry Lucas up to bed on my back. I wanted to be reminded of the old days when I did that all the time. He looked a little surprised when I asked him if he wanted to but he climbed on and I carried him from the basement to his bedroom. It wasn’t too hard, even though I’m pretty sure he was a bit less than his current 55 lbs last time I did it. It felt good, oh so good to handle normal life again.

Since normal life was becoming more manageable, it seemed like a good idea to start exercising again. When I could, I took Alena out for walks, but it was hard to be consistent. It suddenly dawned me that I could probably work out in the morning again! I haven’t been able to for 10-15 years due to that incessant morning coughing. I decided to try it out the next day and was able to walk two miles in 30 minutes before Alena was up for the day. What a feeling!

Anxieties began to lift. I wasn’t worried about having coughing fits in public. Alena got a cold and a few days in, I realized I hadn’t been at all concerned about catching it myself. I stopped holding my breath if people got too close to me in public.

Hope for the future started tugging at my heart. I could more clearly imagine being not only present for my kids in the years to come, but also a participant in their activities and adventures. I found myself wondering if maybe, just maybe I might be able to hold my grandchild someday, or celebrate our 40th (or 50th!) anniversary. Is it possible? I don’t know. But maybe.

Amidst my joy and hope came some unexpected grief and sadness. As I began to feel better, I started to remember, really remember what my life used to be like. I remembered the feelings of strength and ability, and of freedom and vitality. I began to long for complete healing and I became afraid of getting a sense, for the first time ever, of what irreversible damage had been done in my body. As the grip of the disease loosened, I felt desperate to cast it off completely. I wanted to be free. I knew there was a limit to the improvement I would experience. This medication is not a cure and there is still dysfunction in my body. And nothing can erase the suffering this disease has caused and the physical and emotional toll it has taken. Not all losses can be regained, not physically or otherwise. I cannot go back to 100% lung function and I cannot go back to participate in all I have missed. I simultaneously felt intense gratitude for the blessing of significantly improved health and intense sadness for all that had been lost.

It also made me realize just how difficult things had become of late, and I felt overwhelmed by that. Since the beginning of my pregnancy with Alena until I began the medication, I had been struggling. My life had gotten very intense. Every day I was being pushed to the absolute limit of my health and strength. I had no reserve. I had only enough strength to (try to) handle the day to day demands on my body and no additional strength to process what was happening to me–how hard life was becoming and how this disease was seeking to ravage my body. It came into focus as I began to emerge from that place and I found I needed to face it and grieve it even while celebrating the improvements.

On Friday November 15, 2019, I headed back to the clinic to do another breathing test and have an exam to check my progress. I felt excited, anxious, worried, confident, and everything in between. I knew without a doubt I was doing so much better! But I didn’t know how my breathing test would look, and if it would show the gains that I felt. I wondered what the doctor would think and if he’d feel I was responding well.

First up was my breathing test. My FEV1 went from 29% to 39%! A 10 point gain, from 29 to 39, means I gained 34.5% function. In one month! That is significant! I was so excited. The rest of the exam went well and my doctor was pleased at the gains both in lung function and in strength and ability that were seen in such a short time period. The stories of my exercise and small, but meaningful physical feats were rewarded with a broad smile. We know from the study data that the greatest gains in lung function happen in the first weeks of beginning the drug, but he was hopeful that I might see another small bump as I gain more strength. And beyond that, there is hope for years and years of stability.

Obviously 39% lung function is nowhere near normal. I won’t be running any marathons or scaling any mountains, but with that much lung function and the absence of the most oppressive symptoms of the disease, I feel confident that I will thrive within the life I’ve been given. It’s truly a new dawn.

In this new reality, I will still be marked by the struggles of these last years. At times they will still cause me pain. But I wouldn’t change my story. I see God’s hand on every page. I have learned lessons in the darkness that could not have been learned in the light. I have seen God do miracles on my behalf. He has given me the strength and courage to do impossible things. He has protected and preserved me, sustained and upheld me. It has been his strength, his power, his provision that has brought me to this day. I am grateful to have labored hard for some of the greatest blessings in my life. These labors have been life giving and soul satisfying. And God has taken my pain and struggles and turned them into blessings for me over and over again.

As I become accustomed to an easier life, I pray I will never forget or forsake the lessons I learned in shadow. May I never mistake God’s strength for my own. He has given me strength for today and BRIGHT HOPE for tomorrow!

Photo by Jess Marie photography

He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the Lord was my support. He brought me out into a spacious place; he rescued me because he delighted in me. Psalm 18:16-19



It’s amazing how a small thing like having a baby will limit your time for all non-essential activities, including blogging. It feels like just yesterday we were enjoying the last, long, warm days of summer. Hard to believe it will be November in two days. A lot has happened in the last couple of months.


At the park. In short sleeves. Must have been July.

Lucas has had a great start to second grade! He’s growing in different ways and learning a ton. We love his teacher this year. Lucas’s first grade teacher was great too but his teacher’s approach to homework this year is so much better for us. Last year we would get a packet on Friday which was due the following Thursday. We are just not the kind of people who are good about doing a little bit each night. We were constantly realizing it was Wednesday and we hadn’t started even the first page. It made for a lot of long, unpleasant nights. This year his teacher sends home one page of homework every night. It’s so much more manageable and Lucas has even realized he doesn’t hate math. Lucas’s three best friends from school all ended up in his class which has been great for him too. Earlier this week he programmed a video game in his technology class. A couple weeks ago his class went on a field trip to the botanical gardens. It’s been a great year so far!


“Dad, you don’t have to walk me to the bus stop anymore.”

Lucas has been playing a lot of soccer! He just finished the fall season with his school’s rec & ed team. He’s played with most of those boys since kindergarten and it’s been fun to be part of that community over the last three years. He also joined the travel club that I coach for this past August. It has been a really different experience for him but he’s learning a lot and has had fun wearing a real uniform and playing in a legit tournament (we took second place!). We finish up our fall season this weekend!



We play a lot of soccer.

Alena is seven months old which blows my mind. She has become so interactive recently. You forget how much and how quickly they change when your kids are almost eight years apart. I came home one day and she was sitting up all by herself. Now she’s trying to pull herself up on furniture. Crazy. Alena definitely seems to be an extrovert. She is energized when she is around people. She always has a smile for people, even strangers (Lucas would always hide his face…he still sort of does, haha).


At Trader Joe’s. On the lookout for new friends.

Alena is trying solid foods. So far the experiment has been met with mixed reactions. Alena loves her big brother. She is always excited when he gets home from school and she loves to sit on the floor and watch him play. Lucas loves to make her laugh!


Sibling love

Alena needs remarkably little sleep. I guess I am to blame for that. I tend to be more of a night owl and function pretty well on five or six hours. Alena sleeps more than that (don’t worry) but her naps have been inconsistent and recently she’s been more wakeful at night too. It feels like she just doesn’t want to miss out on anything. She’s growing and happy so I guess it’s not a huge problem (apart from the fact her parents are buying a lot more coffee than usual).


Who’s got time for sleep? (Photo taken at 4:21 AM)

One of the biggest developments of the past few months is that Betsy was approved to start taking a new drug aimed at the underlying cause of cystic fibrosis. There has been a lot of scientific breakthroughs over the last several years but until now, the new treatments didn’t work for people with Betsy’s genetic mutation. We knew that this new drug was in the pipeline but thought it would still be six to twelve months before it would be available to patients. Sometime in September, though, we got a call from the doctor saying she could apply to start the new drug early. She was approved in October! We had to frantically work out a few logistics, namely how to wean Alena. Initially, we were under the impression that Betsy would have to stop nursing the baby but thankfully after a few different consultations, we determined that reducing the feedings and supplementing with formula would be sufficient. Whew. Betsy has been on the new drug for less than two weeks but I don’t think using the words “life-changing” is an exaggeration. Her symptoms are greatly reduced. She doesn’t spend the first three hours of her day coughing. The other day, Betsy carried the baby and a basket of laundry up from the basement and didn’t feel overly winded. She is starting to exercise again. It’s remarkable. I am sure Betsy will write more about this but we are so thankful for this new development. It feels like we’ve gone back to a time when her disease seemed more like a footnote rather than the essay itself.


Living her best life.

For years we have been participating in the Cystic Fibrosis Foundation’s Great Strides campaign. The sole purpose is to raise funds for cystic fibrosis research. This new drug is a direct result of that research. We are so thankful for our good friends, Ross and Deb, who organize our Great Strides team every year. We are so thankful for everyone (many of you who are reading this) who has ever donated money to the Great Strides campaign. Every single dollar contributed has led to this medical breakthrough. We are so thankful for the scientists who are doing this important work. And it’s not done. The Cystic Fibrosis Foundation has recently unveiled a new research agenda to continue the development of treatments for every person with cystic fibrosis with an end goal of finding a cure for the disease. It actually feels like this could happen within Betsy’s lifetime.


Great Strides 2019

So that has been our fall! We are excited, tired, and thankful but above all, our hearts are full of hope.

Dear Sheri


Dear Sheri,

It’s so hard to believe that 15 years has passed since you left us. Fifteen! How can that be. I can still hear your voice, as if I spoke with you yesterday. I can still see the contours of your face, feel the warmth of your hands, and hear the sound of your laughter. I easily picture your small frame and the way you walked (a purposeful walk!). I can see you standing by the sink on one leg like a flamingo, rinsing out your mouthpieces after a breathing treatment. I remember you in your blue robe sipping juice at the kitchen table with damp hair in the morning. I see you sitting at your sewing machine working on your quilt. Do you know, I never took that little piece of medical tape off your sewing machine? You must have put it there to mark a seam. It reminds me of you.  And speaking of medical tape, I’ll admit, I’ve started wrapping gifts with it sometimes too now. I mean, why not?

I don’t dream of you as often as I used to. I suppose that is affected by the passage of time, and the fact that the intense grief is less constant now. But when I do, they’re always vivid, and I wake up feeling like we really talked. In my dreams, you’re always wearing a bright pink shirt. We sisters have been talking about our memories from the last months of your life. I remember the last time I saw you. I knew it would be the last, and it was so hard. You were laying on the couch, so still, and so tiny. In my memory you were wearing that pink shirt. I honestly don’t know if that’s accurate, but your pink shirt has become, to me, representative of you.  Just like that shirt, you were bright. You lit up the room, and you were also so smart! You were vibrant and colorful. You were confident. You were fun.

You left an indelible mark on me. In fact your life had a tremendous impact on all our family, and on your friends and acquaintances too. You did such a good job living, keeping your humor, keeping your faith, staying you in the midst of your struggles. I know that’s not easy. In fact it overwhelms me to think of how much you suffered, especially at the end. Honestly, it scares me. Yet you lived and even died with grace and with purpose and with gratitude. You focused on the gifts and blessings and beauty around you and endured the pain and loss and grief without bitterness. You had so much strength and an incredible amount of courage. You lived well and you died well.

I wish I could sit down with you over beverage…coffee for me these days (I’m tired!). Maybe some Faygo for you. What would I tell you if we could chat? What would I say about these last 15 years? I’d want you to hear about the new medication I’m hoping to take soon for my CF. I hear it’s life-changing. I’m hopeful. I think you’d be so excited about it. How I wish you were here too and we could try it together.

I’d probably share some of my CF struggles. It would be nice to tell someone who truly understands. But I wouldn’t want to spend much time there. It’s not the biggest, most important part of my story these last years. I won’t allow that, because I learned from you, that it should never be. You never made cystic fibrosis your focus or your identity and I’m trying to follow your example.

I know I’d want to talk about my kids. First Lucas. I’d want you to know that he loves you.  It is really the sweetest thing. He always includes you when he makes lists of family members or counts how many aunts he has or asks me about what it was like growing up. He told me when he gets to heaven he will be sure to find you. He wishes he knew you here on earth. He talks about you quite regularly. He comforts me when I’m sad because I miss you. He reminds me of you in some ways. He’s smart and very creative like you! He’s very loving. I think you’d get a kick out of the things that make him unique. 

And Alena. There are times when I see your face in hers–an expression or a passing look. I’ll never forget the first time she smiled at me, a true “soulful” smile rather than a reflex. She looked up at me and her whole face broke into a grin and it felt like the sun had just burst out from behind the clouds. She is already vibrant, like you! She’s opinionated and feels free to “speak” her mind when she deems it necessary, also like you. She has a great laugh. She makes us work for it, but it’s so worth it! It’s bubbly likes yours. She doesn’t know you yet, but she will.  We will tell her.

On my bed I have a basket full of supplies I might need for Alena in the night or early morning. It’s that basket you made, covered in blue fabric with cute little tulips. It’s a reminder of you within arms reach. I imagine maybe someday she’d like to have it.

I guess what I’m saying is that I see daily reminders of you–in my kids, in my house, in nature, in myself. Perhaps it’s because I’m always looking. It keeps you close to me and makes the distance between us feel a little less vast. But really you are here. Bits and pieces of you that you left along the way. Ways you touched our lives, memories we have, stories we tell our children about you, gifts you made, funny things you’d say, advice you’d give, things you wrote. Especially the example we had simply by watching you. All five of us sisters looked up to you (figuratively of course 🙂 ).  You were a worthy line leader and an amazing example. I miss touching you and talking to you, yet you live on in my heart and I’ve brought you with me in my experiences. Because I loved you, and you loved me, and we are forever part of each other’s stories.

I miss you and love you so very much. We all do. How could we not? That will never change. And when we get to heaven, we’ll find you.

Love, Betsy


Sheri Leigh Van Bruggen~September 26, 1968-September 4, 2004







All About Alena


It’s been 12 days since our little girl made her appearance! I thought I would tell you a little bit about her so far. I’d like to come back to the blog soon and write about my pregnancy and her birth, but for now I’ll just give you a few details about her and share some of my favorite pictures.

Her name:

Alena Abigail. Alena is pronounced a-lay-na. It means “bright, shining light.” Abigail means “source of joy.”

Alena’s likes:

This girl loves to eat! She cluster feeds, sometimes for hours at a time. But then she’ll take a good long snooze, so I’d say it’s a fair exchange.

The bouncy seat! This is very similar to big brother Lucas, and she even turns her head to the right, just like he did. She likes to sleep in there and will hang out there when she’s awake as well.

Mommy is her favorite for obvious reasons. Lucas is quite sure he’s her second favorite with Jaime bringing up the rear. I’d say there’s a tie for second 🙂

Alena likes getting her hair washed! I think she appreciates a good scalp massage.

She likes snuggles and kisses. It’s a good thing, because none of the three of us can stop kissing her and holding her.

She likes her hands up by her face and sometimes sucks on her fingers or fist.

Alena’s dislikes:

Diaper changes! I mean, they really are the worst. She does not like being cold.

She likes getting her hair washed, but hates getting the rest of her body washed.

She does not appreciate being passed around when she’s found a cozy spot.

Recognizable features:

Alena has a full head of blackish brown hair. I’m sure you can guess where that comes from!

Her eyes, nose, and cheeks look a lot like big brother Lucas’s.

She has very long fingers and very long toes. They look just like mine.

Clues to her personally:

Alena will let us know very loudly if she’s upset. However, when she’s done expressing herself (and we’ve rectified the issue) she’s able to calm her self down and be content without much intervention from us.

She seems a bit more laid back and independent than her brother…at least for now!

She’s also more flexible and will sleep in a variety of places and nurse or take a bottle. Yay!

She’s a tough little one. She had jaundice and endured what seemed like countless heal pricks. If she was being held when they poked her, she didn’t cry. If they put her on a table she cried but would stop immediately when back in our arms.

Lucas is a loving, doting big brother. He’s eager to help and showers her with affection. It’s so sweet! It’ll be fun to see how their relationship develops over time. Alena stares intently at him, I’m guessing because of the contrast of his dark, dark eyes. He was the first to get a smile and although I’m sure it was involuntary, he felt pretty proud.

Jaime and I are doing well too, and adjusting to our life as a family of four! We feel so blessed and thankful for this precious new baby. To God be the glory, great things He has done!

Thirty-seven weeks


In some ways it feels like the pregnancy has flown by. Well, at least to me. Betsy might give you a different answer. When we found out Betsy was pregnant it was hot and humid. In the last month, Lucas has missed eight days of school due to snow, ice, and polar vortexes (vortices?). I guess the change in weather is as good as any indicator to show how far we’ve come.  This past Wednesday, Betsy reached week thirty-seven of the pregnancy. It hasn’t been an easy road to get to this point. Betsy recently went back on IV antibiotics. Her breathing wasn’t quite where it should have been and in an effort to make sure she is in the best possible place heading towards labor and delivery her doctors decided it was the best course of action. Betsy also came down with a stomach virus (which she got from Lucas, which he might have gotten from me) which has been pretty draining. Still, she’s made it to thirty-seven weeks and that feels like a pretty big deal!


The day we found out Betsy was pregnant (miss you summer)!


Thirty-seven weeks!

It’s particularly significant because Lucas was born at thirty-six weeks! The story goes something like this: unsuspecting couple is having a quiet night in; they decide to watch a movie; pregnant wife suggests some ice cream; dutiful husband goes to fetch ice cream; husband returns with ice cream only to find his wife’s water has broken; frantic couple rushes to the hospital; baby is born twenty-seven hours later. Just like in the movies! We were caught off guard, to say the least. Betsy was bound and determined that this time around there would be zero chance that we weren’t ready for the arrival of our little one. The baby’s room has been ready for close to two months. All of the baby clothes have been washed and put away. Hospital bag has been packed since about November. 🙂 The infant car seat was installed a couple weeks ago. We have the name picked out (true story, Lucas was born so early we hadn’t even decided on his middle name yet!). We feel ready!


We’ve got a name, even if all my suggestions were rejected! 😉

Of course, we have no idea just how big a change we are in for. It’s been seven and a half years just the three of us. And in the last few, in particular, we’ve found a certain equilibrium. That familiar, family dynamic is bound to be disrupted with the introduction of another human being. Last weekend we had one last “Lucas gets to make all of the choices” day. After church and a quick lunch we headed off to a park nearby to check out some great horned owls who nested and had babies. Then it was off to an arcade for a couple of hours of fun and games. We finished the day seeing The Lego Movie 2 and snagging some of his favorite chicken quesadillas from Qdoba for dinner. Of course we are all thrilled for the arrival of our baby girl but we have also loved every minute of being a family of three!


Betsy and Lucas tearing it up at the skee-ball lanes!

So, yes, all is well! We feel blessed. We feel ready. We have no idea what weeks 38-40 will bring! And we are looking forward to introducing our little girl the next time we post. 🙂

P.S. As it’s International Women’s Day, I thought I would take a moment to pay tribute to all of the extraordinary women in my life. First and foremost, my wife Betsy, who has done what seemed impossible and soon will be the mother of two all while educating children and finding all of my stuff! To my mother Debbie and my mother-in-law Mary who raised 10 children between them without even one iPad (how, I’m not entirely sure!) and who are now a huge support to Betsy, Lucas, and me. To my sisters Tina and Ede and my sisters-in-law Carolina, Kristi, Julie, Laurie, and Carrie who are all raising families and pursuing meaningful work. I salute you all!

Dreaming Still?


Have you ever woken up from a dream so vivid that you thought it was real? The kind of dream where you are almost surprised to find out it was a figment of your imagination? I haven’t! I almost never wake up even remembering my dreams.  I’m sure there is a psychological explanation for that. Betsy thinks it’s weird. It probably is.

Lately though I’ve felt like I have kind of been stumbling around in a dream. A vivid dream that feels real but hardly seems possible. Back in July we found out that Betsy was pregnant. Pregnant. We are overjoyed! It is a blessing that we did not imagine ourselves experiencing again. We had always wanted a second child and a sibling for Lucas but time and circumstances seemed to suggest that it was not a part of God’s plan for us. And, after a period of sadness and disappointment, we found true peace and were truly in love with our family of three. For the last seven years we have developed a rhythm and equilibrium and so much love among the three of us. And now we are going to be four? It hardly seems real.

But of course, it is real.

I am reminded daily by Lucas’s musings about his soon-to-be little sister. His excitement is palpable.

“Dad, do you think Lightbulb (we are keeping the real name a secret for now) will like animals?”

“Dad, how big is Lightbulb this week?” (Asparagus? Celery? Squash? I always forget!)

“Dad, I can’t wait to show Lightbulb her new room!”


Lucas getting some practice holding his new cousin Elías.

There are other, daily, reminders that there is actually a baby on the way. Betsy is getting bigger and bigger. We can all feel the baby kicking regularly. Betsy has nearly eclipsed the 31 week mark. Generally speaking this pregnancy has been significantly tougher on Betsy.  She was really sick during the first trimester and there were some really rough days. Even some days when she thought she might not make it to 31 weeks. Still, she bore it all with a smile. Betsy’s lung function has held steady throughout the pregnancy and for that we are grateful. She completed a round of antibiotics over the holidays which actually gave her a much needed boost.


There’s either a baby in there or an alien!

Still feeling the positive after the effects of the medications, Betsy has moved on to a serious nesting phase of late. Betsy has been busy washing up all of the baby clothes and setting up the baby’s room. Lucas was born four weeks early and honestly we could not have been less prepared. Betsy is determined not be caught off guard this time around even our little girl decides to make her entrance to the world before the due date.


More pink this time around!

In spite of all the circumstantial evidence, sometimes I’ll still look over at Betsy and say, “WAIT. You’re having a baby?????” Most days I really do have to stop and pinch myself to be sure I’m not still dreaming. I’m pretty sure I’m not. 🙂


Can’t wait to meet you sweet girl. ❤



Inadequate Words


Today! Today is the day I’m finally going to write and publish this post. I’ve sat down to compose it several times and I just haven’t been able to find adequate words to describe what’s been happening in our lives the last four and a half months. I’m not sure there are words, but I’m going to give it a go.

We found out this summer that we are expecting another baby. Another baby! It still seems so unbelievable. I wasn’t expecting to share news of my 40th birthday and news of a new baby in the space of a few months. (Just for the record, this pregnancy has made me feel older than the hills. Welcome to 40, I guess!)

We have always wished for more children, but a few years after Lucas was born, it looked to us as though Lucas would be our only. I even wrote about it in a post called An Inheritance of One. We went ahead and grieved the loss of a bigger family and found contentment and peace. However, sometime after I wrote that post, we felt God calling us to consider that He may have another child for us. My first reaction was the plug my ears and hum. We had already done the hard work of letting go of that dream and I really didn’t want to take it up again. I knew opening my heart to this would lead to pain and struggle, and it did. However, we still had the desire and felt a strong leading from God.  We told God we would follow, although it was not without apprehension.  Right after this decision came a health crisis and years of fighting to try to regain health and lung function. It was confusing. It was heartbreaking. There were many very difficult periods during those years, and times where I simply couldn’t reconcile what was happening to me physically with the leading we had received from God. I wasn’t regaining all of the health I’d lost and I certainly wasn’t getting any younger. Every bump in the road, every downturn, every breathing test and doctors appointment was affected by this tension within me.

Yet this summer, after experiencing a stretch of improved stability, God gave us this gift of a new baby! His timing and plans don’t always match ours, and sometimes they don’t make a lot of sense to us. There’s a sort of a glorious absurdity to the fact that I’m pregnant now…at 40 years old with my lung function in the 30s, seven years after my first pregnancy. It’s not exactly what I would have imagined or planned. Yet it’s beautiful, perfect timing.

We are amazed at God’s goodness and are so grateful for this gift. It has not. been. easy. Almost immediately after I found out about the baby I began dealing with significant nausea and food aversions. I spend the first 17 weeks of the pregnancy hating almost every bite of food I forced into my mouth. Then there was the vomit (CF=coughing. Pregnancy=nausea. Coughing + nausea…I think you know where this is going…), and pervasive exhaustion. I’ve had a hard time sleeping, breathing, moving faster than a snail, leaving the house, and in general handling the normal demands of my life. But, yet, it has been so good. So good to fight for this, good to struggle for what we felt called to do. Ignoring God’s call or at least to giving it up when things were heading south would have been far easier and no one would have blamed us. But I’m so glad we didn’t. It has been a difficult journey but she is so worth it.

She. Did I say that yet? It’s a girl.


Sweet baby girl.

One thing I’ve learned from having cystic fibrosis is that you cannot stop fighting for what is important to you, and you cannot stop fighting to live your life. Sometimes I fight for big things, sometimes for smaller things.  I know that if I don’t swim against the tide, this disease will sweep me away. There have been plenty of losses along the way. Loss is a reality for everyone with a disease like cystic fibrosis, and there is definitely strength and wisdom in sensing when it’s time to let go of certain things. Some battles are long and hard and I am disappointed in the end. Others, like this one, are long and hard with a great reward. It’s easy to say “Praise God!” when things turn out the way we want them, but I praise God for the disappointments, too. I know he has used them for my good, and my life is made fuller when I work and strive for good, even if I don’t get the result I want. The joy and pain, victories and defeats are all linked together to form the fabric of our lives. None of it is outside of God’s redemptive power. I’m reminded of a quote from Theodore Roosevelt. He said, “Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure, than to rank with those poor spirits who neither enjoy nor suffer much because they live in a gray twilight that knows not victory nor defeat.”

In the end, we felt God reassuring us that if he gave us the gift, he would also give me the strength. This new baby is not likely to make my health better or my life easier. If this pregnancy is any indication, the next few years will be a challenge! But they will also be wonderful. Jaime and I keep looking at each other in disbelief. We cannot believe this is happening. We are so, so thankful. She has already enriched our lives so much.

I visited my CF specialist this week and we are grateful that in spite of feeling short of breath, congested and asthmatic, my lung function is the same as it was pre-pregnancy. My oxygen levels were still at 99%, my blood pressure, temperature and heart rate were normal, and I’ve gained a healthy amount of weight. It was such a relief to see these positive indicators. The bottom line is that although I feel worse than usual, my body is actually managing quite well.

Lucas has been beside himself with excitement since we told him about the baby. He regularly reads up on her development on my pregnancy tracker app. He has been counting weeks and keeps track of the baby’s size as compared to a fruit or vegetable. If you ask him he can recite, by memory, her relative size now (banana) and what she will be each week up to 40 weeks. He asks about the baby first thing each morning and when he gets home after school. He gives her (my abdomen) the sweetest most gentle snuggles and whispers words of love to his tiny sibling. He came with us to the ultrasound last week and heard first hand that the baby was a girl which was what he was hoping for! He was able to recognize her face, her feet and hands, and to see her tiny heart beating. There have been so many sweet moments.

He’s been very protective and loving towards me as well. Here are a few recent Lucas quotes that made me smile:

“Hey Mom, I’ll race you to the car! WAIT! No! Mom, don’t run. I’ll just race Dad until the baby comes, okay?”

“Mom, I’m sorry your life is so hard right now. Dad, aren’t you glad only girls can have babies?!”

“Hi Baby! It’s your big brother. I can’t wait to meet you!”

“It’s okay Mom, you don’t have to come to my practice tonight. You can just rest.”

“Whoa, Mom, I think your stomach is EVEN BIGGER than last time I saw you!” (As in five minutes ago when you got home from school?)

I had (mistakenly) told him I’d feel better after the first trimester was over so he planned and threw a party for me on the first day of the second trimester. He bought me flowers and wrote me a card. He felt I needed some new clothes for the pregnancy so Jaime took him to pick out some maternity shirts. He also wanted to buy gifts for the baby and chose some toys and clothes. It was so much fun! He was temporarily frustrated when I continued with the vomiting etc. into the second trimester but he didn’t make me return the gifts 🙂


Blurry but sweet!


Some toys for the baby.

He, of course, has no idea how much this baby will change his charmed only-child existence, but regardless, I think he’s going to take it in stride and make a fantastic older brother. He can’t wait.

So there you have it. My words, inadequate though they may be, to share our joy with you all. Hopefully this will be just the first of many posts about our daughter. Stay tuned.


My very unprofessional bathroom-mirror selfie, in case you wanted a glimpse of my growing belly. 🙂