Alena Abigail – Five Years Old

Today is Alena’s fifth birthday! Happy birthday, Baby Girl.

If she saw that, she would undoubtedly remind me that she hasn’t been a baby for ages. I would, in turn, remind her that she will always be my baby. But…she’s right. She’s a big girl now!

Alena is in her second year of preschool and loves it. She comes home eager to share what she has learned (all of which she assumes we don’t know) and to show off her work. She does loads of projects at school which has really fed her love of art and she has decided to be an artist when she grows up (and she’s an artist now!) She loves drawing, writing notes, making cards and creations for everyone in the house, including the cat (who has yet to show proper appreciation). We can often find her at her little desk, working hard on some expression of love. She also loves sticker books, craft kits, messy experiments, slime, playdough, glitter and anything that can get permanently ground into the carpet.

Alena’s favorite after school activity is to stop at the bakery on her way home to pick a treat. This girl has quite a sweet tooth. She most often picks a donut with frosting and sprinkles, but she also loves cinnamon rolls and occasionally will shift to salty and go for a soft pretzel. She likes to sit and eat her treat in the bakery and read stories out of a princess book they have there. She’d go every day if I’d let her but we try to keep it to once a week :).

Alena gets dragged around in the car a bit more than big bro ever did, and to cope with this, she has invented a variety of car games that she likes to play. Sometimes it’s well known games like “Would you Rather” or “I Spy” (which can be tricky in a moving car), but when she tires of those she makes up her own. Sometimes it’s looking for shapes in nature, or doing an animal sound guessing game. Lately she’s taken to expanding her knowledge on a variety of topics by asking Siri questions on the way to school. Sometimes she invents stories and we drive home in character. We’ve been sisters “Polly and Rox”, mermaid friends “Sequin and Teal”, cats “Cloudy and Snowy”, and many others. She plays a game with Jaime they call “Jam it or Slam it” where Jaime puts his music on shuffle and if she likes the song she yells “Jam it!” and it stays, and if she doesn’t approve, she slams it and they move on. Sometimes she uses the car rides to educate us on a variety of topics. Recently, after learning a few facts about the 80s on Bluey (a popular kids cartoon), she decided to enlighten me:

A: Mom, did you know that in the 80s bicycle seats were high and NO ONE WORE A HELMET!

B: Um, yeah…I mean, I rode a bike with a high seat and we didn’t own bike helmets.

A: Wait, WHAT?!

B: I was a kid in the 80s, did you know that?

A: *mind blown* Also Mom, in the 80s, there was this thing called “jinx”….

Alena has a silly side and loves to make people laugh. She likes to be goofy at the table and make funny faces with her food. She started these dinnertime charades when she was one and is still going strong! She also likes to call Jaime silly names. When she was first learning to talk she called him “Dabu” and now she employs for comedic effect. She also calls him “Onana” after a (in)famous soccer player (you have to admit, it’s pretty fun to say). She went through a phase of calling him “Jaime” when she really needed to get his attention, which was hard not to reinforce because it always made us laugh! She calls her uncle “Uncle Greggie Princess Knight”. I’m happy to say I’m almost always just Mom, Mommy, or Mama, but occasionally a “Mamu” gets in there. Silly girl :).

The flip side of silly Alena, is shy, snuggly Alena, and we see that side, too. Some days she’s outgoing and friendly and talks and waves to people on the street. Other times she sticks close to me and needs lots of hugs, snuggles, and reassurance. In new situations, she’ll often hang back and observe for a bit before jumping into the fray. I love both versions of our girl.

Alena enjoys a wide variety of play activities, dressing up being one of them. She recently went through a phase of dressing as a black cat every time we went to the park. She also likes princesses, especially Rapunzel (who is fearless enough to get some respect from Alena). Recently she went to a princess themed birthday party. Each guest was to dress as their favorite princess. All the girls filed in with jewels and crowns, high heels and fancy hair. I asked Alena if she wanted any fancy accessories, and she said all she needed was her frying pan. (In the Disney version of the movie, Rapunzel fiercely defends herself with a frying pan). It fits her just perfectly.

Alena has no choice but to love soccer. You can’t choose the family you’re born into, right? Thankfully she’s a willing party! She did Tiger Cubs soccer in the fall and is anticipating playing on the Kindergarten Rec and Ed team for her school this fall. She often kicks the ball around with Jaime or Lucas, and this year she selected a favorite English premier league team to follow, Aston Villa! I’m pretty sure her selection had something to do with the color of their jerseys. They have a loyal fan in Alena!

Alena loves playing with friends and her cousins, and her favorite playmate is her big brother. She and Lucas are great buddies and find creative ways to play and have fun together! They put on shows for each other with Legos or other toys, play “Stuffie School” with their animals, create epic adventures and contests with a variety of characters (the more drama the better), and of course enjoy chasing, wrestling, screaming, running and general mayhem-making. Both love animals and visiting zoos together, and they love hanging out for family game night and pajama movie nights. I’m grateful for their bond!

It’s hard to believe this animated little girl has been part of our family for five years already, but as Lucas said the other day, it’s getting hard to remember what life was like without her. Happy Birthday Alena! You truly light up our lives, sweet girl. Thanks for all the hugs, all the love, and all the laughs. We love you so much!

Adventures

Me: Hey, I was thinking about taking the kids to Indianapolis next weekend.
Betsy: WHAT.
Me: Well, there’s a soccer game Saturday night and then I thought we could go check out the zoo on Sunday. And you would get a very chill weekend out of it.
Betsy: That’s true.
Me: Unless…would you want to come?
Betsy: It sounds fun! Let me think about it.

This was a real life conversation that we had a couple weeks ago. It still shocks me that we have conversations like this. Four years ago, an adventure like this would have been completely out of the question because four years ago, Betsy was still chronically ill.

And then one day, out of the blue, we got a call from Betsy’s pulmonary specialist saying that he was applying for compassionate use access to a potentially life-changing drug called Trikafta that hadn’t gained FDA approval yet. We’d heard about Trikafta for years. We’d followed its progress through the Cystic Fibrosis Foundation’s developmental pipeline. We thought it would still be several months until Betsy could try it.

On October 19, 2019 she took her first dose. It felt like almost over night, Betsy felt different. Better. All of the oppressive, day-to-day symptoms seemed to be dissipating. I remember Betsy kept asking if this or that seemed different. As if she couldn’t quite believe her own body. And then she went to her first post-Trikafta appointment a month later. Her breathing test was up close to 10 points. Four years out, her lung function has risen 25 points. It has nearly doubled. Doors that had been closed for years, have opened back up.

Betsy: I’ll come along to Indianapolis.
Me: Yeah? Are you sure you don’t want two days of peace and quiet?
Betsy: No, it will be fun to go all together!

The soccer game…I don’t want to talk about it.

Four years ago, Betsy would have chosen the peace and quiet. Not even because she wanted to, but because she had to. Between the risk of overexertion, the danger of having even one night of bad sleep, exposing herself to other people’s germs and the hassle of dragging along inhalers and refrigerated medications and nebulizer machines, a simple four hour road trip would have been at a minimum inadvisable, and close to impossible. Today, we can hop in the car and go on an adventure. The four of us. That is one of the miracles of Trikafta and why we celebrate Trikafta Day every year!

Betsy, Lucas, Alena, and fern-like giraffe!

Lucas is starting to forget Betsy’s pre-Trikafta life. I’m grateful for that. He was always very aware of how sick his mother was even though he didn’t understand all of the ramifications of Betsy’s disease. I always felt sad that he had to carry that burden as a little kid. Alena will never know what the pre-Trikafta life was like. I feel very grateful for that too.

I also feel grateful for the doctors that took such good care of Betsy during some dark times as her disease evolved. I’m grateful for the family and friends that walked that path with us and helped care for Lucas and Betsy and myself. And I’m grateful for new paths and many more post-Trikafta adventures!

Lucas Gabriel – 12 Years Old

Today is Lucas’s 12th birthday! He’s a great kid and we’re proud to be his parents. Allow me to share a bit about who is he at 12.

Lucas’s favorites:

Color: orange (still!)

Food: Barbacoa (followed closely by lasagna, chicken quesadillas and steak fajitas)

Animal: cats! (domesticated and wild)

Books: Endling Trilogy by Katherine Applegate, Ivan and Friends series by Katherine Applegate, and the Harry Potter series by J.K. Rowling.

Movie: Harry Potter and the Order of the Phoenix

Soccer Teams: Manchester United and Detroit City FC

We asked Lucas to list his favorite bird, but that proved to be an impossibility.

Jaime: Lucas, what’s your favorite bird?

Lucas: I don’t know if I can pick one, I love all birds.

Jaime: But if you HAD to pick one?

Lucas: *thinks hard* Hmmm, maybe blue herons? But I also love chickadees. And titmice! Oh and cardinals and blue jays. Wait, I also really like macaws. And snowy egrets! Oh, also piping plovers, and green winged teals…I really like those guys. Oh, and eagles!!

*He got a chance to hold a macaw when we were in Florida!*

I asked him what makes him the happiest, and he said being at home with Jaime and me and Alena (let’s hear it for the introverts!). He also loves snuggling with the cat. And what makes him the most annoyed? When I badger him to brush his teeth. (Sorry, not sorry!!)

Lucas is a big brother extraordinaire. I’m thankful for how well the kids (usually) get along and how many things they find to do together! Lucas is fun and creative. They’ve continued to bang away at my eardrums this summer with the loud and boisterous adventures they dream up for their toys. Lucas is a fan of tournaments and comes up with various challenges and games for their stuffed animals. But their very favorite thing to do is wrestle. Of course. Try as we might, Jaime and I find it nearly impossible not to stand around cringing and imploring them to be careful! It is, however, wonderful to hear the squealing and laughter and joy.

Lucas is also a great caretaker and this summer he has been taking Alena to the park in exchange for books! I asked him what he thought was fair, and he decided five park visits should equal one book. It’s a pretty sweet deal for me! I send them off, hand in hand, (with my cell phone just in case) and I get an hour to do some work in peace. I only had to drive to the park once for an emergency bathroom assist and once that was squared away, they insisted on walking home as planned. He also is in charge of Alena a few hours a week while I tutor from my home office and has done a great job with that responsibility.

Soccer has always been Lucas’s favorite sport but in the last year his interest in the global game has skyrocketed. For his 10th birthday he got the video game FIFA ’21 which played a major role in his growing obsession with international soccer. He watched many games from last year’s women’s European Championship and men’s World Cup and is currently enjoying this year’s women’s World Cup. He has embraced his heritage and supports the Netherlands and Peru national teams! (It doesn’t hurt that the Netherlands wear a bright orange jersey).

Lucas routinely checks the latest FIFA rankings and even invents his own international tournaments which he then plays out on FIFA ’23 (last year’s Christmas present!). He has also become an avid English Premier League fan, his favorite team being Manchester United. Last season they lost to one of their biggest rivals (they who shall not be named) 7-0 and he took it personally! He worked through his emotions by beating the unnamed rival on FIFA ’23 with every single other Premier League team. This summer Crystal Palace played in Detroit during their preseason tour of the States. Lucas and Jaime went to the game and Lucas got to walk out with the players before the game. It was pretty exciting to watch him on TV! Between that and the fact that Crystal Palace have an eagle on their crest, they were an excellent candidate for his second favorite team.

Lucas has also grown a lot as a player in the last year. He’s always loved playing soccer but this year has been motivated to put in extra training time. Last winter he set a goal for himself to practice every day in the month of February and he saw what a big difference that made when he got on the field. In all the years that Jaime has coached Lucas, he’s been careful to offer but never push Lucas to do extra training. It’s fun to see the tables turned; now it’s Lucas who is asking rather than Jaime offering! His new season kicks off this week and he can’t wait to get back on the pitch with his team!

*The soccer pitch, his other happy place!*

Lucas recently unearthed some of his past interests. After taking a road trip to Florida over spring break and to Tennessee this summer, he has gotten back into hunting for license plates. He’s drawn Alena into it as well, and they like to see how many they can find even for short trips around town. Because we live in a university town, you’d be surprised how many different states we can locate in a ten mile radius! For months didn’t see any Washington D.C. plates, and then one week we saw three within the span of two days. Go figure! Geography is another love that has resurfaced and ties in closely with the license plate hunt and his love of animals and soccer. He loves taking trips as well, and hopes some day to visit many different countries!

*Country flags and stats…this interest did not come from me*

This year Lucas started clarinet in 5th grade band and has enjoyed learning to play! I dusted off my old clarinet and we had fun practicing together. In May, we attended his first ever band concert! I’ve never enjoyed a loud and squawky rendition of Hot Cross Buns and Go Tell Aunt Rhody more. (Side note…Lucas fell on the floor laughing when I shared with him the lyrics of Go Tell Aunt Rhody. After three lines of anticipation, he was not expecting a dead goose.)

*Presenting Lucas Ventura on clarinet and Alena Ventura on recorder!*

Lucas is still our sweet and affectionate boy, although now that he’s 12, he prefers to be sweet and affectionate exclusively at home. We understand and do our best not to blow his cover when he’s in public. He loves to have focused time with each of us and one of his favorite things to do is sit and talk with Jaime and me after Alena goes to bed. He still enjoys reading with me and provided I can stay awake (which is challenging since he’s an incurable night owl), we spend many evenings doing just that before he heads off to bed. I love those quieter moments with him! Lucas is a gift and we are so grateful that he’s ours.

Happy birthday, Lucas. We love you so much!

Post(?)-pandemic

I was noticing the other day that blog posts have been fewer and farther (further?) between of late. I suppose that’s the natural course when you have a four and eleven year old. And a cat! More time dedicated to finding snacks for everyone, including the cat, and less time for creative pursuits.

It has been three years since the onset of the COVID-19 pandemic. For a lot of people the darkest days of the pandemic have been in the rearview mirror for a little while. People got vaccinated, things began to open up, and life started to look normal again. For obvious reasons, our family’s reemergence didn’t follow the same timeline as most others. Since March 2020, our priority has been keeping Betsy safe and healthy. As of the writing of this blog post, none of us have tested positive for COVID-19 (brb going to find some wood to knock on).

March 2020 – “We Thought We Knew, But We Had No Idea”

In some ways it feels like a miracle. A lot of people that we know, including those who took the pandemic seriously from day one and who have taken precautions for both themselves and others, have tested positive at this point. A friend of mine texted me just the other day saying that he tested positive and was feeling awful. I guess it’s a good reminder that COVID-19 is still out there.

From the beginning we have tried to lean heavily on the advice of Betsy’s pulmonary specialists on how a person with a serious lung disease should confront a global pandemic caused by a virus that primarily affects the lungs. Masking was imperative. I remember the first mask I bought. It was the material of a denim shirt. And it had a pocket that could accommodate an air filter. It was miserable! Many subsequent versions followed over the last three years. We did not gather with others for the longest time apart from socially distanced, outdoor meet ups at the park or in the backyard. Later, after vaccinations were more widespread, we were able to resume limited indoor interactions but would only ditch the masks if everyone was able to test negative and then quarantine until said gathering. We are so thankful for the many friends and family who graciously followed more stringent protocols in order to allow us to participate in things like holiday and birthday celebrations while still keeping Betsy safe.

It was a long three years.

I look at pictures of myself from February 2020 and notice significantly less grey hair. Maybe it was coming either way. But the last three years has been extremely stressful! Living in constant state of paranoia takes a toll. For the longest time, I could not shake the thought that any time I left the house, I could potentially return with a virus that would be devastating to the health of the person I love the most. So we stayed the course. Even though the masks were tiresome. And the testing was inconvenient. And the isolation was lonely (not for me personally…I don’t really like other people, but I heard it was rough for some! 😉 ).

I would monitor case counts and hospitalizations and death rates multiple times a week (#fun). For the longest time it felt like there was no progress being made. I remember looking at the daily statistics in January 2022 and the number of cases reported in our county was about five times what they were in March 2020. I think the official language was something like “our community COVID-19 level is high”. But really you just knew because if you looked on the map, everything was red.

I have to say that our kids have been such troopers. It’s not easy to get a toddler to wear a mask. Alena had her first birthday during the first lockdown period. So she’s lived the majority of her life during the pandemic. She got used to wearing masks and leaving them on pretty quickly. Lucas has been a great example for her, never complaining and always helping her adjust her own mask to make sure it was fitting snuggly over her nose and mouth.

Then, this past January, shortly after the holidays, the weekly update from the public schools came through on a Friday. The “community COVID-19 level is….LOW”. Complete with a big green square (not red)! It almost felt like it had to be a mistake. Apart from a random week in the summer of 2021, it hadn’t been low since before the onset of the pandemic. One week, turned into two. Two weeks, turned into three. It wasn’t a fluke. Betsy’s pulmonary doctors had always said when the levels reached low, we could feel free to resume normal activity.

I have found it difficult to just throw caution to the wind. I was prepared to wear a mask indoors for the rest of my life. I was prepared to only ever get takeout. It hasn’t been as easy as flipping a switch. We told Lucas that he could choose whether or not he wanted to wear a mask to school and initially he said that he still wanted to wear one. Easter Sunday was the first week we didn’t wear masks to church (no offense to anyone but I read A LOT of articles about the trajectory of droplets while belting out the hymns). I still wear a mask during peak Trader Joe’s hours because that place is insane. I went to my first concert since before the pandemic and wore a mask. Surprisingly, I wasn’t the only one.

Me at The Charlatans/Ride gig. Tim Burgess said he liked my mask.

A couple weeks ago, I took the kids to eat at a restaurant for the first time since pre-COVID times. Alena was like “What is this place????? They just bring food to you????” Yes, sweet girl. There’s a whole post-pandemic world for you to explore!

Eating indoors. Ahhhhh you’ve been missed.

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

Memories of My Sister

Today marks 18 years since my sister Sheri died. Its hard believe…nearly two decades of life have been lived since last we were together.

I remember before she died, one of Sheri’s regrets was that she wouldn’t be there to experience the upcoming years with us. And of course, she hasn’t been physically present. We all miss her, even my kids who never knew her. “I wish I could have met Aunt Sheri,” Lucas said this morning. “Me too!” Alena agreed. We have kept her close these 18 years, however. This morning Lucas pointed out to Alena all the things in our home that Sheri made for us–items that we can hold and touch that make her seem near. They are reminders of her love, her creativity, and the countless hours she spent investing in the lives of others. This morning I read over past emails, cards and letters she had written. I ran my fingers over the words she penned in her neat cursive, imagining that her fingerprints might still be there. Holding the things she once held feels like a connection to her, and to our shared past.

Sometimes memories come to mind that I haven’t thought of for years. This morning I got a clear mental image of her behind the counter of the DeliQue, a small deli near our house where she worked one summer. I hadn’t thought of that in ages. I reread an email she had sent me dating back to the summer before she died. She had written to apologize (sort of). You see, when I visited her I sometimes acted as chauffeur to enable her to get out the house. She was on oxygen full time, tethered to the tubing and tank, which made it difficult to get out. Sheri loved wild flowers and would pick and dry them for various craft projects. She had found a patch of especially lovely flowers, so we drove over, she slipped her oxygen off, popped out of the car, and picked some. Just as she was walking back to the car, someone stepped out of a nearby house and started yelling at us. Thankfully I had our getaway car gassed up and idling and we made a clean escape. She hadn’t realized what she was doing was illegal, and in her email she made an unsuccessful attempt to feel bad about it (she was enjoying the flowers!)

Sheri liked to make up words if she felt the English language lacked a satisfactory option. “Buckus” comes to mind. It means something revolting and I’m sure you’ll agree, it is a far more satisfying expression than “yuck” or “gross.” She used a lot of nicknames: “J-man” for Jaime, “Bets” or “Betsy Beesy” for me, and some more original ones like “Wabers” for my sister Kristi and “Bering Straight” for my sister Carrie which evolved over time and made sense to those involved. She often added on to words or phrases to spice them up a bit. The phrase “stuffed to the gills” became “stuffed to the gillicutties.”

I called my mom today and she reminded me that Sheri would always come home with little treasures to share after her hospitalizations. Whether it be a single portion jelly packet, a hospital-sized soap or a treat or gift someone had brought her, she doled out those little gifts to her sisters when she returned home and we treasured them.

Being the oldest of six sisters, she was subjected to a fair amount of irritation at the hands of us younger siblings. I remember a fair share of eyerolls and her declarations that the current topic of dinnertime conversation was “not of general interest.” I’m pretty sure she was the one who made the “no singing at the table” rule as well. These memories make me laugh now. Oh, Sheri!

Starting with my first major cystic fibrosis health crisis in 2007 and in the various challenges I experienced in the 12 years that followed, I identified with Sheri strongly in our shared disease. Even though she was no longer present, still she lent me her wisdom and supported me. I clung to the lessons I had learned from her, read and reread her poetry and her published articles, tried to apply the advice she had given me before she died. One of the great blessings of those years of struggle was the pleasure of feeling so close to her, even in her absence. I shared in her suffering in a way I hadn’t been able to when she was alive. It gave me a new understanding of who she was and a profound admiration and respect for the way she was able to handle adversity and suffering. It made me love her even more, if that’s possible.

Now that I have started Trikafta and my health has so drastically improved, I haven’t had to lean on Sheri in quite the same way. I miss thinking of her constantly and feeling close to her. But I know without a doubt that she is rejoicing in my new life and the healing I’ve experienced. She never wanted me to suffer as she did. How grateful I am that she guided me even in her absence. She taught me so much. She was a shining light for Jesus and no amount of suffering dimmed that light.

I remember Sheri as a courageous fighter. I remember her undying faith in God, her generosity and love, her wisdom and her strength. I also remember her as “just” my big sister. My sister who got irritated but also was patient and loving and fun. My sister who played games and laughed and gave gifts. My sister with summer jobs and cool friends and good grades. My sister who rolled her eyes and spoke her mind. My sister the artist, the teacher, the musician, the writer, the wife. My sister who I loved and looked up to and who loved me too. My sister who is forever a part of me. I miss her so very much.

With your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory’s side

And fly to Jesus
Fly to Jesus
Fly to Jesus and live
From Untitled Hymn by Chris Rice

Lucas Gabriel – 11 Years Old

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.

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.*

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!

*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!

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!

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

Bright Hope

Strength for today and BRIGHT HOPE for tomorrow!