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

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!

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!

Inadequate Words

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

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

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

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

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

She. Did I say that yet? It’s a girl.

Sweet baby girl.

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

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

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

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

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

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

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

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

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

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

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

Blurry but sweet!

Some toys for the baby.

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

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

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

Gone But Never Forgotten

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ALL the Waterloo girls, circa 1983.

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

Bright Hope

Strength for today and BRIGHT HOPE for tomorrow!

faith