Lucas Gabriel – 14 Years Old

Earlier this month, Lucas turned 14 years old! It has been my tradition since he turned three to post about him each year on his birthday. At least that was my tradition from age 3-12. My new *teenage edition* tradition is to post about him sometime during his birthday month. It goes with the teen vibe, right?! My excuse is that it’s hard to find a quiet block of time in the summer to write. The kids are here all day. They eat a lot of snacks. The cat wants to go outside. There are activities, travel and appointments. It’s hot and humid. When they’re (finally) both in bed at night, I’m cooked. Today, finally, I have a quiet block of time to write! Time to lock in and get it done.

Lucas finished his second year of middle school in June and started his 8th grade year this week! Lucas liked being a 7th grader more than being the new kid in school. It’s a lot more fun to rag on “those little 6th graders” than to be one yourself! Last year Lucas got stitches for the first time. Thankfully we didn’t have any repeat of that! But he did get braces last September and a phone in the spring! Both seemed like a rite of passage. Last year his favorite classes were English Language Arts (because he had several friends in that class) and World Geography (because he loved the content). He enjoyed playing the clarinet and studying Spanish. He wasn’t able to take Spanish in school last year due to an error in his schedule, and had to take French instead. He started labeling anything that seemed French a “oui oui baguette,” and that has gotten adopted into our family lingo along with some of the unavoidable middle school slang. (Bonus points for anyone who can identify the two phrases I used in paragraph one!). We’ll see what his favorite subjects are this year and if we have any other firsts!

There is no place Lucas loves more than home. His favorite days are those where he can do whatever he wants all day, no obligations. He can often be found relaxing on the couch with the cat, watching a soccer game with Jaime, or playing FC 25 on the Nintendo Switch. In the evenings he likes to read or listen to audiobooks with me. This summer he spent a lot of time out on the patio in the back with Alena and Bowie, reading, writing, and listening to music. The kid knows how to relax!

Lucas is family-oriented. He loves it when all four of us can be together. His favorite local family activities include anything involving nature and animals such as going to beaches, parks, gardens, and zoos, and also our local cat cafe. This year he got a bird feeder with a camera and has loved seeing videos of the birds that visit our yard! The squirrels were also loving the feeder, so we tried a few different deterrents. He enjoyed watching a squirrel bouncing around on the slinky we put over the pole and the squirrel who took a bite of the cayenne pepper-laced seeds before high tailing it out of there almost as much as he liked the watching the birds themselves! I love the sound sound of that boy’s laughter. He got a hummingbird feeder for his birthday and we have all loved seeing our miniature friends visit!

Along with local activities, Lucas loves to take trips and dream up new places to go. This year we visited Louisville, Kentucky over spring break which was a lot of fun! One of the highlights for Lucas was seeing a fox at one of the local parks there. We also took in a DCFC away soccer game, visited a new zoo, and walked from Kentucky to Indiana! Thankfully a bridge was provided for our convenience.

Lucas is a great big brother and we’re grateful for the bond that he and Alena share. They have their moments of annoyance and frustration, but those are far outweighed by the joy and companionship they bring each other. They built a summer reading fort again this year and read library books together there. They code hunted together for our local library game. They often play soccer together, sometimes out on the pitch and other times in the family room. By the lamps and picture frames. While the cat is sleeping. Last year I said goodbye to an old lamp, this year a small side table and essential oil diffuser were broken (but repaired). Ah well, it is worth it! Lucas and Alena are about as different as two siblings can be, but they always find ways to connect and play. It helps that they share a love of animals, soccer, and milkshakes!

Along with the four of us, Lucas loves his extended family. Jaime’s family is local so Lucas gets to hang out with his grandparents every week, and sees his aunts, uncles, and cousins regularly. These relationships are super important to him and we’re grateful to have family close by! Although he doesn’t see my family as much, he feels connected there too and always looks forward to our times together. This summer we celebrated two big anniversaries, my parents’ 60th and Jaime’s parents’ 50th! We got to spend a weekend in western Michigan seeing my family and a week in Florida with Jaime’s family. These trips were both highlights of Lucas’s summer!

Lucas really enjoyed middle school youth group at church this year. His group meets twice a month for lessons, fun activities, and service projects. He knows many of the older members of our congregation and he enjoyed baking muffins and delivering them to those congregants last fall! He also had a blast at the winter retreat in January. He played his clarinet in church for the Sunday service highlighting the middle schoolers and although it was outside his comfort zone, he was proud to be part of the service. He did great and I thought my heart would burst!

Playing at church…I promise there’s a kid and a clarinet back there!

Soccer is Lucas’s greatest passion. He loves playing, of course, but he consumes the sport in every way possible. Lucas loves to watch soccer. A couple of days before his birthday he walked into the kitchen to tell Jaime that the Dutch second division was kicking off that day and he was going to go turn on Dordrecht vs Cambuur. The look on Jaime’s face! (He never imagined he’d have competition for the title of ‘best informed soccer fan’ in the house). Lucas loves to watch games live, too. He and Jaime go to watch Detroit City FC throughout the spring, summer, and fall. Lucas’s favorite team is Manchester United. It’s been a rough few years for Man U. fans but his loyalty hasn’t wavered! This summer, Lucas went with Jaime and his grandparents to Chicago to see Manchester United play in a summer, preseason friendly against another English team (Bournemouth). It’s the second time Lucas has seen Manchester United play state side and he (and Jaime) are now scheming to go and see them play in England!

Lucas began playing soccer when he was in young fives which means he’s entering his 10th year! He has played for his current travel club since second grade and loves his team (and coach Dad!). He also plays Futsal in the winter. He’s almost always kicking a ball (or anything roundish, even balloons) around the house, and he and Jaime go out to the fields close to our house as often as they can. Any time we leave the house and there’s a chance there will be a little bit of space, Lucas packs a soccer ball. Going into 8th grade means that next summer Lucas will try out for high school soccer! This year for his birthday, he asked to reserve an indoor field so he could have a family game of soccer with his grandpa, uncles, and cousins. Even I suited up and played. It is always fun to see him in his element!

I’m looking at the clock, realizing that the star of his post will be home from school in ten minutes, so it’s time to wrap up. Thanks for reading about our boy! We love him so much and are so proud of him. He’s kind and funny, creative, sweet, smart, and best of all, he’s ours.

Happy belated birthday, Kiddo. You’re the best.

Alena Abigail-Four Years Old

Alena is four years old today! Happy birthday to our sweet girl!

Every year I go back and read my birthday posts from years past. It’s striking how much has changed–how much Alena has grown and matured, how much she’s learned, and how many new experiences she has had. It’s also striking how much has not changed! Even as a one-year-old she showed personality traits that have persisted–vivaciousness, creativity and imagination, sweetness, affection, and a healthy dose of sass. We love her so much and all that makes her unique!

This was a big year for Alena as she started attending preschool two mornings a week. She was very brave about going, and walked in the first day without any tears. At first her teachers described her as shy and said she liked to observe more than participate, but in time she relaxed and showed her true colors. They now describe her as talkative, engaged and friendly! She comes home full of stories about her friends, her teachers, and her learning (and often her clothes are full of paint, sand or mud).

One of her favorite things to do after school is stop and get a treat from DJ’s bakery. She’ll usually choose a donut or a soft pretzel, eat off all the frosting or all the salt, and then hand the mutilated remains to me to finish. I guess that’s a win-win?

Alena resists favorites, or rather changes her favorites constantly, but does have a few abiding loves. Food-wise she eats more mac and cheese than any other food. If I let her, she’d probably eat more chocolate than any other food. At age three Alena loved puppies but has firmly switched her allegiance to cats. She showers our cat Bowie with her love, she adores books about cats, stuffed cats, and watching kitty videos (which she and Jaime do together when he puts her to bed). Between Alena and Lucas there is no shortage of kitty love around here!

Alena loves a wide variety of arts and crafts and messy activities. She often can be found drawing or coloring or littering the floor with tiny scraps of paper because for some reason, she loves cutting up paper. She enjoys playdough too, and and unlike her big brother who always kept his colors separate and in their proper place, she mixes it all to create an enormous “rainbow” blob.

Alena likes to be fashionable has gone through several style phases this year. For a while she favored pretty dresses and rarely wore anything else…even to bed! She went through a leopard print phase (she calls it cheetah print) and would often sport it head to toe. Then for a time she wanted everything tucked in and walked around looking like an old man with her pants pulled way up and her shirts stuffed in. Currently her style is more fluid but involves multiple outfit changes per day, which often means a fun little surprise when I step into her room at bedtime and find the floor littered with a week’s worth of clothing.

Growing up in this household means that Alena has been exposed to soccer since birth. She enjoys playing with Jaime and Lucas (and occasionally me) and this year she took her first real soccer class. She is quick and has a pretty strong kick for such a small fry. She also seems to be left-footed like Lucas and Jaime! She enjoys playing in our backyard, basement and even the living room (they’ve only knocked over one plant and broken one lamp).

I overheard the following conversation the other morning:

“Dad, let’s play soccer together!”

“OK, sure, but I have to get ready for work in a few minutes!”

“Dad, you need to go get the goals out.”

“Let’s just pass back and forth. After work I’ll have more time and we can get the goals out.”

[*dramatic sigh] “Dad, just go get them now…” (He did.)

One of Alena’s favorite things to do is play and relax with her big bro. The two of them have so much fun together and it warms my mother heart. Lucas cooks up all sorts of high drama adventures and they use a variety of characters and stuffed animals to play out the stories he creates. Alena has lots of ideas too and does her best to insert herself into the planning process (with mixed results). They also like to wrestle and chase and playfight and run around screaming like maniacs. I love the joy and exuberance! (That is when I’m not telling them to be careful, or to quiet down lest I go deaf, or any other number of stodgy parental admonitions.)

Although Alena sometimes poses as quiet when we’re out and about, at home she rarely stops talking. Her favorite time to strike up a deep conversation is once she’s in bed and is supposed to be falling asleep. We had one such conversation just the other night:

“Mom, can Jesus see us right now?”

“Yes.”

“Well then I’ll bet he wonders where Lucas and Daddy are!”

“I think he can see Lucas and Daddy too.”

“How many eyes does he have?!?”

“Well, it’s just he sees differently than we do. He’s more powerful than we are. He even made the world!”

“Yeah! And that’s kind of tricky! Wait…did Jesus make butterflies?”

“Yes!”

“Wow. Thank you for telling me that. I will never forget that because I love butterflies!”

I love these sweet conversations with my girl, and this age of learning and curiosity and questions.

We are proud of Alena and are so grateful that God gave her to us. She lives up to her name, Alena Abigail, which means bright, shining light and bringer of joy.

Happy Birthday Sweetheart. We love you!

*Newborn Alena (photo by Emmy Jay Photography)*

Trikafta Day/I Am Thankful

I’m sitting here crying in my coffee. Actually it’s water, but “crying in my water” doesn’t have quite the same ring to it! And as you know, I’d rather be drinking (more) coffee anyway!

It’s been three years now since I swallowed my first dose of Trikafta. And three days after that, I awoke to a new life. As I was thinking about what to write this year, how to commemorate and celebrate this day, I started reading back through some of my previous posts (thus the tears).

From April 2015:

“I started IV antibiotics two weeks ago to address a plunge in my lung function which followed a difficult winter of weathering illness after illness. Being my first experience with IVs for cystic fibrosis, I wasn’t quite sure what to expect, but I surely didn’t expect what came. Instead of feeling relief and healing, I experienced a steady worsening of symptoms. Instead of renewed health and strength, I felt myself plunging deeper into what feels like an abyss–sleepless nights, a tight, raspy cough, unsightly congestion, exhaustion, and with it all, a profound feeling of defeat.

This is not the first time I’ve had a health crisis, and this current struggle does not come close to the magnitude of a few emergency situations I’ve lived through. But to the best of my recollection, this is the first time I’ve struggled so intensely to pull myself out of such strong feelings of fear, worry, and disappointment.”

From September 2015

“After a brief silence, [Jaime] asked, “Do you think we will have 50 years together?” I felt my throat tighten. We don’t often have these types of conversations. They are frightening. And of course, we can only guess at the answer. But sometimes, those questions that weigh on our hearts but rarely make it to our lips, have to be voiced.”

From October of 2016

“Some specific struggles have endured for years with ups and downs, times of hope and times of despair, bends in the road, minor bumps and major setbacks. At times I feel tired and bruised. There is chronic hardship in my life that will never leave me. Barring a miracle, there is no end in sight on this side of eternity. It’s hard. It’s sad. And so I grieve.“

From August 2017

“I can’t find my footing and my lung function is stubbornly refusing to climb back up, even while on the medications. It’s been incredibly disheartening.

My emotions have taken a pretty hard hit, and that has perhaps been the hardest part of this summer. Just three short months ago I was flying high. I was so relieved and excited to have gotten through the winter relatively unscathed for the first time in several years. My heart was brimming with hope and thankfulness. I thought I had finally regained the strength and stability I’d been laboring towards for the past two years and I fully expected to continue to gain health and strength through the summer months. Suddenly I could imagine things for myself that I barely dared to hope for during some of the hardest moments of the past two years. I thought that after jumping hurdle after hurdle I’d finally reached my goal. Yet here I am, no better off than I was two years ago. Back to the beginning again. I imagined blue skies and puffy white clouds, and instead the skies have been dark and the storm clouds menacing.

And it hurts. Dreams are threatening to slip away forever. The hope, the joy, the anticipation I felt last spring seems like some sort of cruel joke now. I feel betrayed. Was I a fool for expecting those clear skies?“

When I started Trikafta I wondered if over time I would begin to forget what my old life was like. I wondered if the intensity and struggles would soften around the edges. But they haven’t. When I read those words, I am brought right back. I can feel the tightness in my chest. I can feel a hand on my throat, the air straining through my lungs. I feel the frustration, the grief, the pain, the fear. I remember.

Alena loves to help me take my medicine. Every day when she hands me those Trikafta pills, I am thankful. So. Very. Thankful. She was too little to remember those hardest days, and is too young now to understand the significance of what she is holding. Yet she hands them to me, the gift that allows me to live free and to be a healthy mother. To be on such a scary, slippery slope, to feel the hand of death reaching for me, to see my disease creep into every aspect of my life, and then to have life and health breathed back into my body is truly a most unexpected and remarkable gift.

Those years included many hard times. There was so much worry, so much loss, so much hurt, so much struggle. Even so, even then, that wasn’t the whole story.

From June 2015

“Then my phone started blowing up. At first I wasn’t sure what was happening. I got one text with a photo, than another, than another. You see, unbeknownst to me, Jaime had purchased some “breathe” bracelets from the Cystic Fibrosis Foundation and offered them to family and friends to wear as a show of support and solidarity. People started sending me pictures of themselves wearing the bands, saying they were thinking of me and praying for me this morning since it was my appointment day. I didn’t have any time to worry because I spent all morning overwhelmed and moved by the amazing show of love and support.”

From July 2017

“And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.”

From November 2018

“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.“

There is an ease to my life now that I could not have imagined possible on that morning three years ago. But even before this miracle, even when my struggles were great, still I was living a full and joyful life. Hard, yes. But full of goodness and love and joy. Joy need not be dependent on the particulars of our lives. God is enough in every situation. He provides in every struggle. My heart overflows with thanks.

Thank you God for this medical breakthrough and the miracle of renewed health. Thank you for relief from the oppressive symptoms of my disease, for deep, clear breaths, and a bright and hopeful future. Thank you that I am here to raise my children, that I can work, clean my house, run errands, and have “just a cold.” Thank you that I have enough breath to read aloud, to play tag, to lift and carry my little one, to run up and down the stairs when I’m in a rush. Thank you that I have energy at the end of a long day to cook dinner, to fold that last load of laundry, to tuck my kids into bed, to play with the cat. Thank you for the lines on my forehead and the wrinkles around my eyes–for the accumulation of years that have caused them and the smiles and laughter etched there.

Thank you God for the struggles, for all I learned through them, for the ways they stretched me and helped me to grow. Thank you for the eyes they gave me to see and understand suffering, for the countless times they pushed me into the arms of Jesus where I found hope and meaning and purpose. Thank you for helping me to be resilient and for giving me the strength to keep fighting. Because of you, I was never alone. Thank you for blessing me through my pain and because of it. Help me never to forget your faithfulness. Remind me of all we’ve been through together when pain and struggle find me again.

And to you dear friends and family, thank you. You have enriched my life with your love and care, your encouragement and prayers, and your constant support. Your love made the hard times bearable and it fills the good times with even more joy. You have allowed my pain to become your pain and my joy to become your joy. I needed you then and I need you now. You have been faithful.

I read the perfect devotion this morning from Kate Bowler’s book entitled Good Enough. At the end of the devotion was written a “Blessing for Caregivers.” It is a fitting way to end this post.

“Close your eyes and see them all, the army of those who have cared for you in the past, who have fought for you, who have loved you well. And drink it in, creating a pool of gratitude that swells inside. For blessed are you, having received, and having loved, who can walk around with a thankful heart. Amen.”

The Lord is my strength and my shield; my heart trusts in him, and he helps me.
My heart leaps for joy, and with my song I praise him. Psalm 28:7

Alena Abigail-Three Years Old

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.

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)

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!

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.

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!

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.

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.

Trikafta Day/The Lord is My Salvation

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

The Lord has done great things for us, and we are filled with joy!
Psalm 126:3

Trikafta, Year One

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!

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!

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

Fall

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!

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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!

Bright Hope

Strength for today and BRIGHT HOPE for tomorrow!

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