Lucas Gabriel – 11 Years Old

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As much as I try, I cannot think of a more creative way to start this birthday post than my usual exclamation and lament over the swift passage of time. Lucas is 11, and I can’t believe it! Where did my baby go? Slow down already!!

Phew, now that we have that out of the way, let me tell you a little bit about who Lucas is! Spoiler alert, he’s a pretty great kid.

I asked Lucas just moments ago to report on his favorites. In years past he would confidently proclaim his favorites without any hesitation. This year I got a whole lot of, “Hmmmm, that’s a hard one….” and “it’s really close between…” I guess that means he’s expanding his horizons!

Favorite (few):

Colors: orange and turquoise

Animals: cats and pelicans

Books: The Warden and the Wolf King by Andrew Peterson, Harry Potter and the Deathly Hallows by J.K. Rowling, The Secret Keepers by Trenton Lee Stewart, The Lord of the Rings Trilogy by J.R.R Tolkien

Movies: Harry Potter and the Deathly Hallows Part 2 and The Hobbit: Battle of the Five Armies

Songs: The Adults are Talking by the Strokes and 70’s Cop Bribe (Eyes for Me) by The C33s

Foods: chicken quesadillas, barbacoa, and steak fajitas

Sports: soccer and gaga ball (if that counts)

I asked if he had any strong dislikes.

“What do you exactly mean?” he asked me.

“You know,” I said, “things that make you growl on the inside.”

“Oh yeah,” he said, “Definitely that show Alena watches called Nella the Princess Knight. Also chocolate. But that’s all I can think of!”

“Are you sure that’s all?” I asked.

“Well, also when you make me organize my desk.”

He sometimes growls on the outside too. It’s often something to do with Alena trying to change a well-planned out story they are playing with too many of her own suggestions, or when she tries to parent him, or when I suggest that perhaps he would enjoy playing in his room more if he could find the floor! He is, overall, a very agreeable and happy kid however, and we love that about him!

Lucas is a fun big brother. He and Alena have spent many happy (and admittedly a few unhappy) hours this summer playing together! Lucas is very imaginative and cooks up all sorts of perilous adventures for their toys and stuffed animals. I’d like to take this opportunity to let my neighbors know that all the shrieking, screaming, gasping and charging around the house is in good fun, so don’t be alarmed!

Playing with stuffies (and glow sticks!)
These poor Barbies were attacked by a troll, survived a shipwreck, and fought an intense battle against toothy cows. Thankfully they survived with their luxurious long hair and masculine good looks intact.

Lucas is very sweet and loving towards Alena and in their calmer moments, he enjoys reading to her and teaching her things, especially about birds and animals.

Sharing a book before bed.
Teaching little ‘sis about rocks.

It makes my heart happy to observe sweet moments of love between them and I’m so thankful for their bond!

Lucas still loves animals and nature, and he especially loves birds. Last year blue herons were his favorite, but after we took a trip to Florida this past winter, pelicans have edged them out by a hair. He still loves feeding birds from his hand at Kensington Metro park and says his greatest wish at the moment is to see a green-winged teal. There were some sightings at lakes in our area last spring so we’re hoping he might catch a glimpse at some point!

Lucas feeding a…excuse me a moment while I go ask him what kind of bird that is.
Pelican!

Of course no animal is quite as special to Lucas as our pet cat Bowie. He loves her and takes great care of her! The amount of affection that Bowie permits is steadily growing much to Lucas’s delight.

Lucas continues to enjoy soccer and had a great year on his team with coach Dad! It’s been fun to watch his skills develop and see some confidence starting to shine through. His favorite positions to play are forward and midfield. He’s left-footed so he’s a nice little weapon to have on that side of the field. A highlight for him this year was scoring the winning goal at his fall tournament last season!

Foot skills in action
It’s always exciting to win a tournament!

Lucas also loves watching soccer, particularly going to see his favorite team Detroit City FC. He’s also fascinated with international soccer and watched a lot of the men’s and women’s European Championships and World Cup qualifying matches this year!

A chilly DCFC game with his bestie!

I never thought I’d say this, but in the past year Lucas has fallen in love with swimming! For years he didn’t much like the water and had some fears to overcome, but last summer we found a dynamic teacher who was the perfect fit for him, and now he spends hours every week in the pool! It’s been awesome to see him learn a new skill and be able to enjoy such a fun summer activity!

Lucas still enjoys writing and creating books and slide shows. During the school year he and his closest buddy from school wrote and illustrated a three book series featuring our cat Bowie and his friend’s dog Skye as superheroes (the fourth book is currently in progress). They then used their stuffed animals to turn their books into movies. They were very intense and thus are all rated R. Lucas has recently made his own bird book on google slides, created a Hogwarts yearbook featuring his favorite heroes and villains from the Harry Potter series, made a guide detailing his stuffed animals’ traits and personalities, and created a family tree. I don’t know where he gets all these ideas but he’s full of them and thus is rarely bored!

When things get quiet I often find him at his desk writing, sometimes with someone peeking over his shoulder.

We are proud of Lucas and profoundly grateful that God gave him to us! I do sometimes wish I could slow down the passage of time or relive some of the sweet moments of the past (I sure miss those chubby baby cheeks!), but I’m also excited to see what the next weeks, months, and years will bring. I know big changes are ahead as he gets older, but we will always belong to each other, and nothing can change that.

Happy Birthday Lucas! We love you!

One
Four
Seven
Eleven!

Alena Abigail-Three Years Old

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Happy birthday to our sweet girl, Alena! When she woke up this morning, her first words were, “I’m three!!!!” Hard to believe, but she’s right!

I have often started Lucas’s birthday posts by listing his favorites, but Alena doesn’t operate in quite the same way. She prefers to shake things up and be as unpredictable as possible. Instead of watching one TV show over and over she wants to try something new every day. One day she will label a food her favorite and the next day tell me it’s too yucky for her. She does however have three constants in her life…her love of all things pink, her love of chocolate, and her adoration of puppies! Well, at least for this week.

Alena and her cousin puppy Maple!

After a several months of pretty intense shyness, Alena has reverted back to her more outgoing ways. She will now say hi to almost anyone who crosses her path and then loudly report to me whether she perceives that person to be friendly or not. She also wants to greet and pet every dog she sees (and we have lots of dogs in our neighborhood!) She regularly asks for her own puppy. We’ll see if she manages to wear Jaime down over the next ten years. For now she will have to be content with our kitty Bowie!

She loves Bowie in spite of her cat-ness.

Alena enjoys dressing up and has come up with some pretty interesting costumes. She has a black sparkly skirt that she calls her “speed skirt” and she dons it before flying around the dining room table at alarming speeds. She especially enjoys pirates, cowboys and princesses. She spends a great deal of time pretending to be various puppies until she tires of it and tells me that’s she wants to be Alena again. (I am always tired of it way before she is!)

Speed skirt and googles (for additional speed)
Princess Alena!
All mermaids need a fanny pack!

Alena likes to play dress up at home and sees no reason to change before going out. She has graced the grocery store and Jaime’s office with several different costumes.

Dalmatian Alena found a cow employee at the store!
Shopping with Tigger!

Alena likes to help out around the house. She’s sure she capable of doing everything I do! I enjoy my little helper and it’s great when I can get some projects done.

A little rocking chair touch up
Some help with the dishes…
A little plumbing project!

When Alena is through being helpful, she enjoys being…unhelpful. As in making enormous messes. Nothing is more fun then throwing things all over the place! Just today she and her buddy Silas were making not-so-secret plans over the phone to recreate the tragic bean scene shown in the photo below.

As you can see, they felt really bad about the big mess.

It’s hard to get mad at her when she is so full of joy in her mess-making!

Anyone need a tissue?

As you might imagine, there is nothing Alena loves more than playing with her big brother! Those two have a great relationship and have loads of fun together. Lucas has bravely allowed Alena to join him in his room to play with his legos, they play with stuffed animals together, run around like maniacs and generate a ridiculous amount of noise. Lucas lectures Alena on all his interests. She now correctly identifies many species of birds (and mammals). She catches me off guard with comments like, “Mom, look! There’s a Cooper’s Hawk!”

Alena is very affectionate and showers those she loves with hugs and kisses. I often overhear a whispered “I love you” to Lucas or Bowie. She tells me I’m her girl and the other day she said, “Mom, you’re a genius!” Not sure where she heard that, but I’ll take it! She’s a tough little thing and will often shrug off an injury by telling me, “I got an owie…but it’s fine!” She’s energetic and animated, sweet and opinionated. She’s a little sassy too. She feels free to let us know if she’s displeased.

“I do not approve of this photo shoot.”

Oh our sweet baby girl. What would we do without her! She brings us so much joy (along with a few gray hairs). We still can’t believe she’s ours. We are so thankful for her.

Happy Birthday Alena Abigail! We love you more than words can say.

Baby Alena
Age 1
Age 2
Zipping into 3!!

Trikafta Day/The Lord is My Salvation

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There was a song I listened to nearly every day during my pregnancy with Alena. It was a time of happiness and intense struggle. I was overjoyed with the miracle of the little life growing within me: a daughter we had longed for and waited many years to hold. Yet I was overwhelmed with the demands she put on my body which was wracked with disease. The music gave me comfort.

Last night I found the song and listened to it again. I was transported back to those days. I can see it clearly in my mind’s eye. I am in my bedroom, perched on the edge of my bed. In my hand I hold a cup of medicine and I try to breathe deeply of the vapor swirling around me. I’m coughing, spitting, straining. Vomit rises in my throat. My head pounds and sweat beads on my brow. It’s such hard work. I am trying to preserve both my life and hers. There are tears; I am struggling. I lift my hands towards heaven, reaching for God. The words of the song wash over me. I sing them when I have breath:

The grace of God has reached for me, and pulled me from the raging sea. And I am safe on this solid ground, the Lord is my salvation.

I will not fear when darkness falls. His strength will help me scale these walls. I’ll see the dawn of the rising sun, the Lord is my salvation.

My hope is hidden in the Lord. He flowers each promise of His Word. When winter fades I know spring will come, the Lord is my salvation.

In times of waiting, times of need, when I know loss, when I am weak, I know His grace will renew these days. The Lord is my salvation.

It has now been two years since I began taking the breakthrough medication, Trikafta, to treat my cystic fibrosis. Trikafta has drastically changed my life. It has lessened the most oppressive symptoms of the disease: the congestion and coughing, the inflammation and illness; the pain. It has softened the dread, the anxieties, and the fear. I have more time, more energy, and more reserve. I sleep peacefully. No longer is every moment of my day punctuated by some ugly aspect of my disease. I am not forced to think about it constantly. I can simply live. It is such a blessing. It is new life.

Jaime and I decided that each year we will commemorate this day, and Trikafta Day was born. I want to remember the before: the struggles and the victories, the joys and the pain, the healing and the hurts. I want to remember how God showed himself strong on my behalf over and over. How he provided for me and protected me, how he sustained and upheld me. I suffered, we suffered, but we were never alone. God was in those moments with us and we were surrounded by so many who loved and supported us. I want to remember how that felt. How it felt to experience God’s love through others.

During an extended time of illness, I remember walking by a wedding photo we have displayed. I stopped to look at it. My bright, unlined face stared back at me with such joy, such optimism, and such health. “You have no idea,” I said aloud to my smiling face. I felt the urge to warn her, 23-year old me, of what was to come. I wanted to tell her to enjoy her health while she could, to protect it and guard it, before it slipped away.

And now I feel the urge again, this time to comfort the weary woman I see in my mind’s eye, 40-year-old me, who had shed many tears and fought some very tough battles. I would tell her to keep fighting, keep hoping, and keep trusting. I would remind her that God wouldn’t waste her pain. I would assure her that God would provide.

I didn’t know Trikafta was coming during those difficult days. I never expected a miracle of this magnitude. But I did know that God was there and that I was safe in his loving care. Sometimes he gives us the strength to endure. Sometimes he gives us new life. Always he is faithful.

Who is like the Lord our God? Strong to save, faithful in love. My debt is paid, and the victory won, the Lord is my salvation!

The Lord is My Salvation, by Keith and Kristyn Getty

photo by Jess Marie Photography

The Lord has done great things for us, and we are filled with joy!

Psalm 126:3

Ten Years Old

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Here we are, double digits for our sweet Lucas. Nothing prepares you for how fast time flies when you have children. It’s so hard to believe that our chubby cheeked baby boy is ten!

Here are Lucas’s current favorites:

  • Color: he is staunchly sticking to orange!
  • Animals: cats and blue herons
  • Book: Harry Potter and the Order of the Phoenix by J.K. Rowling
  • Movie: Lord of the Rings, The Two Towers
  • TV Show: Lego Masters
  • Fictional Character: Harry Potter
  • Song: The Adults are Talking by the Strokes
  • Food: Chicken Quesadillas
  • Snack: popsicles
  • Sport: All soccer, all the time!

He randomly asked Jaime and me the other day which of our physical features we liked the best and shared that his favorite feature is his hair! Can love of one’s hair be passed through the genes?! Both Jaime and Lucas do have great hair, I must admit. Lucas likes to keep his long and shaggy these days, but smooth rather than “crazy” like Jaime’s.

Long Locks

I asked him if he had any dislikes to share and he said CHOCOLATE! He recently decided to try chocolate (after nine years of emphatic refusal) and put an entire chocolate kiss in his mouth. You would have thought he just chomped down on a garlic clove from the look of shock and disgust on his face! I know, I don’t get it either.

Lucas is a creative kid and enjoys writing. He’s filled countless journals with stories he’s made up using characters he admires from books and movies. He also likes to make lists and charts and plans out chapter titles for future books he plans to write. Lately he’s gotten into using google slides to make informational books, maps, and diagrams and is a pro at finding photos and adding graphics. He always has a million ideas rattling around in that head of his! As I write this, he’s listing the fifty states in order of size which to him is a fun, relaxing weekend activity. He also still enjoys imaginative play and creates his own “movies” by acting out his stories with toy figures. He used to ask us to watch all these movies but over time he has done this less and mostly just makes them for his own enjoyment (and as an excuse to escape to his room and hide from his sister).

Lucas loves the fantasy genre. After reading the Hobbit last year, he and Jaime read the three Lord of the Rings books together this past fall. I was impressed he was able to listen and understand what can be some very dense passages! They took to reading the book with a dictionary nearby because every time he heard a word he didn’t know, he asked Jaime to define it. Lucas enjoyed watching the movies after completing the books. Early in 2021, he started the Harry Potter series. He didn’t think he was going to like it, but was hooked after the first chapter of the first book. He’s now on book six and doesn’t want it to end! He and Alena can often be found dueling with chopsticks-turned-wands. Lucas has patiently taught her various spells syllable by syllable. It’s pretty amusing to hear a two-year-old yell “Expelliarmus!”

A little light reading.

Animals and nature are still Lucas’s greatest love! One of his favorite places in the whole world is Kensington Metro Park where he loves to walk the trails, feed the birds, and keep tallies of all the animals he sees there in the wild.

Feeding birds at Kensington!

He has become very knowledgeable about birds over the last year and is always scanning the skies and pointing them out. Recently while vacationing in Tennessee, he pointed and said, “Mom, look!!” I followed his gaze, located the object, and my brain said, “bird!” His brain said, “Double-crested cormorant, 27-35 inches in height, weight of 3-5 lbs, diet of small fish, must consume about one pound a day…etc.) How he holds all those facts in his head is beyond me! He hopes to have a career involving animals when he grows up. He’s wanted to be an animal scientist for some time, and lately has been talking about being a wild animal photographer or making wildlife documentaries. He’s working on refining his British accent in case he gets to narrate his own work.

In May, we got a cat, and this, according to Lucas, made all his dreams come true. (Phew, I guess my work here is done!). Jaime takes both the credit and the blame for this rather spontaneous development depending on if it’s a day where Bowie is sweet and playful and fun or if she’s scratching up my furniture and waking us up at night. Even on the scratching and waking days, Lucas is thrilled and loves her to death.

Lucas is a devoted big brother and adores Alena. They have their moments of fighting and frustration as all siblings do, but overall they get along great and have loads of fun together. They like to jump on cushions, chase around the dining room table, play super heroes, entertain the cat together, pretend to be animals (Lucas is always a cat and Alena is usually a pig) and occasionally they try something more subdued (that doesn’t involve screaming) like looking at books or watching TV together. Lucas has begun to teach her all about animals and she’s loves this. She now regularly points to the sky and shouts “Blue Heron!!” whether there is one flying by or not. They are a great pair.

Teaching Alena about fireflies.
Sibling love!

Lucas loves being with Alena, and family in general is very important to him. Although the pandemic has been a challenge for all of us in various ways, he loved the extra family time and the adventures the four of us had together. He also greatly loves his extended family, and enjoys spending time with his cousins, aunts, uncles, and grandparents.

Soccer continues to be a big part of Lucas’s life. He had a great year on his Michigan Tigers team and is already excited about the upcoming season. This past week he went to team camp and loved the fact that practice was two hours instead of one! He actually enjoys the drills and exercises and not just the scrimmaging and playing games (although that his still his favorite). He will have coach Dad again next year which he is thrilled about!

He also loves going to watch his favorite team, Detroit City FC, compete in a nearby town. He went to his first game when he was three and a half (and he only made it to halftime!). Now he wouldn’t dream of missing a game. His favorite player is not on the team this year but it hasn’t dampened his enthusiasm at all. He loves going with Jaime and meeting his friends and his grandparents there. No DCFC game would be complete without a few slices of food truck pizza which he says is second only to my homemade pizza :).

A DCFC game with his besties!

And there you have it. A snapshot of our boy at age 10. He is growing and changing, but he still has a heart of gold. We are so proud of how kind he is, how loving, considerate, affectionate, and sweet. I know the years ahead will bring big changes but I’m confident that those things will remain. Happy birthday sweet boy! We love you so very much.

Alena Abigail – Two Years Old

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Happy 2nd birthday to our baby girl, Alena! Although I’ll probably always call her my baby, she is certainly not that tiny baby who slept so sweetly in my arms anymore. She is full of personality, toddler-antics, and an alarming amount of energy and enthusiasm. I’m pretty sure I’m going to be tired for the rest of my life!

I’m writing this blog while having yet another cup of coffee because she decided to ring in her birthday by being up for half the night. Apparently it’s never too early to get the party started!

I’m glad one of us is wide awake.

What shall I tell you about our girl at age two? Alena is usually very friendly and outgoing. If we go on a bike ride or a walk, she’ll say hi to anyone who passes by. Her middle name, Abigail, means source of joy, and sure enough, a hello from our bright-eyed girl has garnered a lot of warm smiles. Alena loves to play with other kids and knows the names of many of the children who live in our neighborhood. She loves to be outdoors and spends many happy hours at the parks near our home. She gets just as excited as her big brother when she sees squirrels, birds, deer, or any wild or domesticated creature that may wander by.

Alena is talkative and keeps us entertained with her words and phrases. She called Lucas “Wuwu” and herself “A-nana.” Jaime is either Daddy or “Dabu,” and I am usually Mommy these days. She speaks with a great deal of feeling and inflection. “Wait, Mommy!” “NO-NO Wuwu! A-nana’s turn!” “Are you doing, Dabu?” She asks to see Jaime and Lucas as soon as she wakes up in the morning and after her nap. She’ll be in for a shock once Lucas returns to school and Jaime returns to work!

Speaking of Lucas, Alena adores him. They have the occasional sibling argument which usually stems from Alena stealing all of Lucas’s toys and refusing to give them back, but usually they get along great. Lucas is Alena’s favorite playmate and she loves doing exactly what he is doing (no matter if she’s capable or not).

They are the sweetest of siblings and the best of friends.

Alena likes to do things together as a family. If I suggest a walk, she delivers Jaime’s and Lucas’s shoes to them and monitors their progress before pulling them out the door. Alena likes to get a laugh and Lucas is a willing party. A few of her favorites this year have been dumping her dinner bowl and doing a very convincing Cookie Monster impression. We have cleaned a LOT of food off the floor.

Oh Alena.

Alena is good at sharing for a two year old and when she’s not throwing her food on the floor, she likes to share it. She will walk all over the house searching for Lucas or Jaime in order to give them a soggy bite of whatever she’s eating. Lucas has gotten pretty good at pretending to take bites rather than brave her wrath by refusing.

She even tried to share her goldfish crackers with a bird!

I would love to tell you what Alena’s favorites are, but unlike her brother who has always had strong preferences, Alena changes her mind regularly. One day she’ll love mac and cheese and the next day she’ll refuse to touch it. For a while she loved the color green and constantly was asking for a green shirt. Before I had the chance to acquiesce she had moved on. Other short lived favorites that have gone the way of the dodo bird include Sesame Street, the Trolls Movie, the Madagascar theme song, and long walks in the stroller.

Here are a few of my favorite photos from this past year:

Alena is spunky little treasure and we can’t imagine our lives without her! We love her so very much. We are so thankful that she will forever be ours.

Age TWO!

Trikafta, Year One

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Today marks one year since I began taking the drug Trikafta, the new breakthrough cystic fibrosis therapy that targets and corrects the basic defect of the disease. What a year it has been!

I remember so clearly heading into clinic last October for a check up and to pick up my first month’s supply of the medication. The drug had not been FDA approved yet, but I was granted early access due to the severity of my disease. I had read the study results which were very hopeful, but had been warned by my doctor that these results were obtained by patients in better health than I was, so we were unsure if we could expect the same level of improvement for me. Still, there was hope in the air.

Now as I reflect on my experience a year later, I find it very hard to put it into words. I’m sure those of you who have asked me about it and listened to my incoherent ramblings would concur! My life has drastically changed. I still have cystic fibrosis. I still deal with certain symptoms of the disease and I have sustained lung damage over the years that will always limit me to some extent. Yet life has been breathed back into a body that was strained and declining. CF is a progressive disease, which means it gets worse over time. To experience not only a halt in the decline but a marked improvement and a reversal of symptoms is a truly remarkable and unexpected experience. I am incredibly grateful!

The very best part of my new life on Trikafta is the absence of a chronic cough and congestion. This has been the most life-changing aspect of being on Trikafta. Starting and ending each day without those intensely oppressive symptoms is an enormous gift. It means I can enjoy my mornings. It means I have significantly more energy. It means my body can maintain a healthy weight as I’m not burning hundreds of calories with intense coughing and constant illness. It means less systemic inflammation and no headaches or vomiting or back pain. It means freedom!

The second greatest gift is the absence of constant stress and worry. As time passed and I got sicker, as my lung function dropped, simple colds or viruses became major threats. I never knew how sick I might get or what the long-term damage would be when a “simple” illness came knocking at my door. And even on the healthiest of days, I never knew when I might have a coughing fit in public which (take my word for it), is a very unpleasant experience. One of the best things is simply being able to wake up each day and live my life without constant thoughts of my health and my disease. It’s a joy to be able to contemplate the future without fear or dread.

My life looks much more “normal” than it did a year ago. I can handle so many more tasks again. I get up and breeze through breathing treatments that take a fraction of the time they used to take. I can make breakfast, take Alena on a walk and to the park, come home and help with lunch, clean and do laundry or prep for my students while Alena naps and Lucas attends school online. I can take Lucas and Alena out in the afternoon and still have energy to make dinner, tutor, and get Alena to bed. I am exhausted every night. But it’s a tired that comes from a full day rather than from infection and illness. Feeling tired is so much better than feeling sick and tired!

There are other positives worth mentioning. I sleep better. When I wake up in the night, it’s because a warm, disheveled, toddler needs her mama, not because I can’t breathe or am uncomfortable. I don’t have nightmares about suffocating anymore. My posture has improved. We’re not spending hundreds of dollars on tissues! Everyone in the household is under less stress and strain. Some of Lucas’s stress-induced habits such as biting on toys or pencils have simply disappeared.

I still get out of breath with exertion. At last check, my lung function was 43%. A near 60% reduction in lung function, even without acute symptoms, will not go unnoticed. Pushing the stroller up a hill makes me winded. Cleaning, bending over repeatedly to pick up toys, running around like a crazy woman trying to get packed up and out the door for whatever activity I have planned, those things make me out of breath as well. But I recover quickly and move on without a problem.

My digestive system must have improved to some degree because my vitamin levels are far higher than they used to be. But I can’t perceive the improvement and still have daily symptoms to contend with. I also struggle with asthma. The same triggers are there–cold, damp weather, high humidity, times when my seasonal allergies flare up. I still culture the same two strains of bacteria that have been present in my lungs for some time. I still require more sleep than the average person (do you hear me, Alena??).

I wanted to talk about the timing of this medication which requires a diversion into the story of Alena. The years prior to Alena’s birth were challenging. I experienced health crisis after health crisis and watched my lung function drop from the upper 40s to the mid 30s. I fought harder than I’d ever fought to regain health and to find stability and I just couldn’t win. But in his time, God provided just enough healing and stability for me to become pregnant. He provided enough strength for me to carry Alena and usher her safely into the world. It was rough. It is the hardest thing I have ever done, to grow and nurture a baby within me when the challenges of my disease were so great. But God provided. He provided the strength to get through the intense first months with a newborn. At times it felt like I was just hanging on by a thread, but God kept me safe. He didn’t make it easy, but he sustained me. And now, as life has ramped up again with the 24/7 demands of caring for a busy toddler, I have Trikafta. If I try to imagine what life would be like right now if I was still as sick as I had gotten…it’s not a pretty picture. It seemed strange that we would have our second child 7.5 years after our first, when I was nearly 41 years old. But it was God’s perfect timing. Alena came when the help I needed was on its way.

In some ways it would have been nice to have had this medication earlier, to have sustained less lung damage, and to have experienced less pain and fear. But the struggles and difficulties have been used by God for good in my life. I have learned about trusting God in all circumstances. I’ve experienced the strength and beauty of community as friends and family have surrounded us with love and support. I’ve experienced the joy of unconditional love as Jaime never once wavered in his commitment to love me and sacrifice for me and our family when things got intense and his burdens were great. I’ve gained an empathy for those who suffer as a result of my own suffering. I’ve had the privilege to better understand and know my sister Sheri as I’ve experienced some of the struggles that marked her life. It has given me more respect and more gratitude for the beauty of her life and the strength she exhibited. It makes me feel connected to her even in her absence.

So many people have mentioned Sheri to me when they hear about the life-saving aspects of this medication, wondering if it’s hard that it wasn’t here in time for her and if I wish she were still alive and could benefit as well. Because I miss her so much, there will always be a part of me that wishes she was still with us. However, when I reflect on Sheri’s life, her story, her legacy, I conclude that I would not change it. The length of her life was ordained by God and his perfect plan for her was carried out in a beautiful, meaningful life. She had many challenges but her strength, her resilience, her faithfulness, and the beauty of her spirit resulted in a life of victory, not of tragedy.

Why it was God’s plan for me to benefit from this medication and not Sheri is a mystery that belongs to God and not to me. I can greatly rejoice in God’s goodness to me and not feel hurt or anger or guilt that it wasn’t for Sheri. I know God gave her just what she needed and he has done the same for me.

It’s time to wrap up this post, isn’t it! I want to end by saying thank you to all you wonderful people who have stuck by me in sickness. I’m so grateful the pendulum has swung back to a place of health. I am thankful that God gave me strength for the dark days of illness and struggle, and he gives me strength for today when life is much easier. My heart is filled with bright hope and so much gratitude!

Here are a few pictures of my loves. I hope they bring a smile to your face as they do to mine every day. Grace and peace to you all, my dear friends and family!

Nine Years Old

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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:

Favorites:

  • 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

Dislikes:

  • 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

 

The Life and Times of COVID-19

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To say it’s been a crazy few months would probably be an understatement. I was scrolling through the photos on my phone yesterday and this is what the days leading up to looked like:

February 29: Lucas slept over at my parents house. Betsy and I took Alena and went out for coffee.

March 1: We went to church in the morning and in the afternoon I took the kids out for a hike.

March 4: I took a lovely walk around central campus on my lunch break.

March 8: It was 60 degrees and Lucas’s soccer team had practice – outside!

March 10: I voted in the presidential primary.

March 11: I went with Lucas and his class on a field trip to the art museum.

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Soccer practice on March 8!

It was all so normal. We were making plans to have a small party to celebrate Alena’s first birthday and brainstorming some ideas of fun things we might do over Lucas’s spring break. But March 12 ended up being the last day Lucas went to school. March 13 was the last day I went to work. I remember thinking on the first day of the lock down, “Oh, well, I guess we’ll be home for a few weeks and then things will go back to normal in April”. It’s June 29. Some things vaguely resemble our pre-coronavirus existence. Most things are still radically different. 

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Easter 2020: All dressed up with nowhere to go.

Our perspective on the COVID-19 pandemic has, predictably, been colored by the fact that Betsy is part of a particularly vulnerable population. We have been über cautious and I feel good about that decision. Even before cases started being reported locally, Betsy was starting to venture out less. We are pretty avid hand washers and usually have hand sanitizer when we go out but all of us were being even more diligent. My boss and I talked about the possibility of working from home for a time. Still, I never imagined how much our life was going to change over the next few months.

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My basement work space/Lucas’s school computer/Zoom headquarters/laundry room.

The good news in all of this, is that we have all stayed healthy! (“PTL” as my mother-in-law would say)

We did the home school routine for two and a half months! I am personally very grateful for Betsy’s willingness to do the heavy lifting with respect to Lucas’s education. Being married to a teacher has its advantages. If it weren’t for her there is a pretty good possibility Lucas would be repeating the second grade next year. 😉 Lucas’s actual teacher did a great job organizing lessons and having video class meetings. On the last day of school, Lucas still considered second grade to be his favorite year of school.

Initially, Betsy was worried she wouldn’t be able to work at all since it was unsafe for her to see her tutoring students in her home office. But in the end, she was able to continue tutoring remotely using FaceTime. The parents of her students have been super supportive and willing to help out during the sessions when necessary! She works every day during my lunch break and a couple of evenings as well.

Since March I have only been going out to get groceries once a month. I leave early in the morning to try and get to stores before they got too crowded and I usually make stops at 5-6 different stores to make sure I can get everything we need and not give the impression that I am being a complete hoarder. And once I get home, I wipe everything down that needs to come into the house immediately and organize non-perishables that can stay in the garage for a few days. Maybe it is overkill, but we were not (and still are not) interested in taking any unnecessary risks. We’ve been extremely grateful for the friends and family that have been willing to grab us milk and eggs (and chocolate) in between my marathon grocery runs.

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Quarantine crew – it’s a good thing we like each other.

The biggest thing is that we really did go into a pretty hardcore isolation. We would take walks around the block when we knew there wouldn’t be many people out and did a lot of playing in our backyard but that was really it for the better part of three months. We had a handful of visits from people who came to wave and say hello through our front windows. We have been grateful for the technology that has still allowed us to interact with so many people; what would we have done if this had happened 20 years ago before FaceTime and Zoom and Blue Jeans? In the last couple of weeks, we have started seeing other human beings (only outdoors and with plenty of social distancing) and it has been really nice. But I suspect it will still be quite some time before we step foot into someone else’s house or invite others into our home.

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We got really good at ladder golf.

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Lots of backyard soccer.

It has been hard to have many of our normal routines completely dismantled. There has been a loss of freedom. But it hasn’t felt hard to make these sacrifices for Betsy’s sake and for the sake of many others. And we are so grateful for those who have been doing the same! I don’t know what the future will hold. I have no idea if or when I will go back to working in the office. We have lots of questions about what Lucas will do about school in the fall. We have personal plans that are all kind of up in the air.

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Real, live people!

All the way back in March, I was doing a Lenten inspired Instagram challenge and there were Bible verses for each day and you had to come up with a pictorial representation. The verse from Day 36 was Jeremiah 32:37-38. “I will bring them back to this place and let them live in safety. They will be my people and I will be their God.” It’s been good to reflect on God’s faithfulness and the promise of restoration, even amidst so much uncertainty, these last several months.

We miss you all and hope to see you soon!

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Social distancing walk.

Alena Abigail – One Year Old

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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)

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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.

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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.

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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.

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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.

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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!