In a Moment

Most of us are aware that life can change in a moment. We go about our lives, busy with our day-to-day, and then something happens that forever changes the course of what we knew. We can look back and mark it as the moment that changed everything. 

Some moments are the good kind...

...you have been accepted {into X University}!

...we would like to extend the job offer.

...Will you marry me?

...You're {finally} pregnant!

They are life-altering, and when you look back at those sweet and sometimes long-awaited or long-prayed-for moments, you understand the gift that they are. That your life is as beautiful and amazing as it is because of those moments. You can't imagine your life being any other way without those moments. Those are the moments that make life full of joy and beauty and wonder, and you can't help but praise God for all of the gifts that He has bestowed on you. 

Some moments are the hard kind, but still the ones meant to make us stronger people. Meant to grow our faith and forge our character...

...you will live with this disease for the rest of your life.

...we are going to have to let you go.

...your treatment has been denied.

They can be life-altering too, and you wonder what God is doing. Sometimes you pray, and the Lord is gracious to answer and remove the hardship. But sometimes, His answer is "wait," or even "no," and you are forced to wrestle with His sovereignty. You are reminded of His goodness despite the hardships you face, knowing that He is doing something in your heart to make you more like Him. It's not always easy to endure, and you may often feel weary, but you push on toward the goal of spiritual maturity and the abundant life with Christ. You ask for His power to praise His name through the difficulties, looking in hope to the glory that awaits.

And then. And then there are those moments that knock the breath out of you...

...you have lost the baby.

...they don't think he's going to make it.

...his heart has stopped.

These are the moments when your whole world stops, and you aren't quite sure if you will recover. Because you don't feel strong enough to survive it. You have faced hard things before, but this? This is different... These moments will replay over and over in your mind; they will even show up {uninvited} in your dreams. You will wish with all of your heart that you could just go back to the time before that moment that changed everything. You will plead with God why He had to allow that moment to even happen. Your soul will cry out with a deep ache and longing, and there will often not even be words, because what do you even say in those moments?

Today marks the one year anniversary of saying "see you soon" to my brother. In a moment, everything changed for my family. In a moment, my parents lost their only son, and I became an only child. In a moment, I lost my first friend. As I have been anticipating this anniversary, the moments of that weekend have been replaying in my head again, almost to the intensity that they did in those early days. The texts from my mom. The phone call from my dad. The lonely moments on the plane. The suffocating moments in the hospital. The last moments in the OR. The moments planning the funeral. 

So many moments that will forever be etched on my brain, the kind of moments that should never be. Because it's not supposed to be this way. A parent should never have to bury their child; it's not the natural order of things. I should have my brother by my side for the days ahead. He was too young. Death and darkness were never the way it was supposed to be. 

I have said more than once in this grief journey that I do not understand how people grieve without Jesus; this is hard enough with Him. The gift that I have is that I don't have to grieve alone or without hope. In His loving kindness, God has gently reminded me of some other important moments that changed everything. Moments that make it possible to wake up and face these hard days...

...the light has come into the world.

...it is finished.

...he is not here, for he has risen!

Death and darkness were not the plan. But because of sin, death and darkness are the realities that we face in this world. But God, in His goodness, and from the beginning, set into motion a rescue plan to redeem all of the terrible things. In a moment, light shone in the darkness, Christ was born into a broken and weary world. In a moment, Christ gave His life to pay the penalty of our sin; our debt was paid in full, He died once for all. In a moment, he conquered death and walked out of the tomb, so that we might have life in Him. It's the life that Michael now enjoys. Our hope as followers of Jesus is that one day, all of the wrong things will be made right, and all of the dark things will be made light. And in another moment,

"Behold! I tell you a mystery. We shall not all sleep, but we shall all be changed, in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed." - 1 Corinthians 15:51-52 

I grieve, yes. And right now, it's heavy and complicated and exhausting. But I have hope that in a moment, I will be reunited with my brother {and with the babies we lost!} In a moment, all of my tears will be dried, all of my pain will be gone forever. And I, too, will be forever with our Savior, who has so graciously and gently walked beside me in every moment of my life...the good, the hard, and the ones that have knocked the breath out of me.

A precious moment in time

Stelara vs. Wezlana

I have now taken 2 shots of the biosimilar Wezlana. The first month was really rough; my body was definitely adjusting to it. For most of the month, I had an upset stomach and nausea every day, and eating made it worse. The fatigue and muscle/joint pain also returned. 

Thankfully, I haven't seen a huge change in the frequency in my migraines, but when I saw my neurologist last week, she did confirm that it was possible to see an uptick. I have noticed that I have had more nausea with my migraines, which is something that had subsided when I went on my preventive medication {topiramate}. So I am still monitoring those for now, and my neurologist told me to call her if I saw any changes. 

Another strange side effect of Stelara {and now Wezlana} is nose irritation, specifically an increase in mucous {gross? TMI? I know}. I basically wake up every morning having to blow my nose, almost like I have a cold, but I don't. It's weird, and I don't understand it, but it's something that showed up when I started Stelara, and is actually listed on the side effects list for Wezlana. I have definitely noticed an increase in nose irritation after these 2 shots. I don't know what it means, but there you go.

The good news is that the second month has gone a little better, with the upset stomach and nausea easing up quite a bit. Unfortunately, the rest of the side effects have stuck around, but I'll take whatever improvement I can get. I haven't had any Crohn's flares yet, so I am still praying and holding hope that Wezlana will hold my remission. I'll deal with the side effects; I just want to stay in remission. 

The big reason the insurance company denied coverage for my Crohn's medication and forced me over to the biosimilar is cost. And I can't say that I fully blame them. The cost of biologics is criminal. I have shown the cost of my medication before, but to see the comparison is still mind-blowing. Because even on the CHEAPER biologic, it still costs $5,500 a month for my Crohn's medication. $65,000 per year to stay in remission and save my intestines {hopefully}. That's a full-time salary, just for my medication alone!

But that's the new, better price. That's SAVING money. Because Stelara was costing $28,000 a month. $336,000 per year. So yeah, I get how the switch makes business sense. It's just that the patient is caught in the middle, and their health is never actually considered in the decisions. And all the while, stupid amounts of money are being made at our expense. 

And for the record, it only says that I owe $0, because I pay the amount billed within the first couple months of our plan year. I have to be ready to pay my full deductible at the start of the plan year, every year, without exception...because of my Crohn's medication. The Lord has always provided what we have needed, and I am so thankful. But it hurts every year, and I can't help but feel the weight and burden that my health places on my family.

13 years ago I was curled up on the bathroom floor in pain, unable to make it to meet my first GI, heading instead to the ER where I would be diagnosed with Crohn's Disease. 4 biologics, 2 GIs, multiple colonoscopies/endoscopies, countless steroids, 2 remissions later, I still have many of the same symptoms... I am still fighting the same fights. So much feels like insanity: repeating the same thing over and over. But I know more, am stronger in so many ways because I have lived through so much. I'm thankful for the Lord's daily strength, for His faithfulness to me every morning. I trust Him for what lies ahead, and I wake up ready to continue the Crohn's fight.

IBD Looks Like

It's Crohn's & Colitis Awareness Week, and this will be my 13th year to recognize it {my 14th Christmas with Crohn's}. It's wild to think back on those first days of my initial diagnosis and see how far I have come, while also feeling like I am fighting many of the same battles...

This year's theme for Awareness Week is "IBD Looks Like..." Because it doesn't look like just one thing. It's a million little moments, often invisible, that make up a journey of managing this awful and unending disease. While there are certainly struggles and many defeating days, there are also wins and reminders that progress is possible, and I am so grateful for all the grace I have been shown on this journey. 

For me, IBD looks like...

...managing symptoms on a daily basis, whether it's from the disease itself or the side effects from the medications needed to keep the disease at bay. It's settling for the side effects because the disease symptoms are far worse. It's operating at 70% on a "good" day. It's pushing through the pain and discomfort that would bench most people, but you have learned to function in spite of it, because otherwise you would never get out of bed. It's realizing that you are stronger than you think, despite feeling so tired and weak most days, simply because you choose to keep showing up on those hard days.

...always planning around how you feel, having to work around what you eat, how much energy you will expend, where the bathrooms are, etc. It's being hungry, but being too afraid to eat. It's not about your preferences, but about survival for your body and your overall health, because if you don't plan accordingly, it can wreck your whole week {or longer, depending on your choices and the status of your disease}. It's often having to change plans, decline foods, or simply say "no" to the things you love.

...constantly having to advocate for yourself. Whether it's with doctors, insurance companies, or pharmacies, there is always a fight for better care, coverage, or treatment. It's trying to get all of your doctors to talk to one another so you get comprehensive care, and not just a bandaid to treat a symptom. It's spending countless hours on the phone with insurance, fighting to get them to honor coverage for expensive treatments that they don't understand or care to pay for. It's trying to fight for your mental health and keep stress levels minimal through it all. It's hoping that this treatment will be the one that will put you in remission...and that insurance will cover for as long as possible before you have to switch again.

...feeling the defeat of disease, walking the long days of sickness, praying for healing. It's looking "fine," but knowing your body is literally fighting against you. But it's also finally finding a treatment that works, achieving remission, and starting to feel more like yourself again. It's knowing that you will live with this awful disease for the rest of your life, but being thankful for the advances that have already been made in the 13 years since your initial diagnosis. It's feeling the discouragement of chronic disease, but feeling thankful for the support of family, friends and the right medical team. It's knowing that your body is broken, but also being grateful for how the Lord has faithfully walked with you in every aspect of your disease.

...chronic pain. fatigue. inflammation. weight loss. flares. brain fog. joint pain. diarrhea. nausea. hair loss. migraines. doctor appointments. constipation. vitamin deficiencies. colonoscopies. bloodwork. endoscopies. anemia. ulcers. self-injections. insurance denials. a nightstand full of pills/vitamins. knowing where all the bathrooms are wherever you go. loose-fitting clothing to put the least pressure on your gut. having "safe" foods in your bag. living through the flares and fear and fighting through anyway.

Advent 2025

For Advent this year, we will do our Advent Blocks again. The kids still ask for it, so we will keep doing it :) 

For school, we will be walking through The Savior was Born from Driven by Grace. We have been using their curriculum for our Bible time, so we will take a break from our Old Testament study and walk through this Christmas study in December.

For our family advent reading at dinner time, we will use our Advent Wreath. Our church handed out family Advent reading, so we will use that as we light our candles each evening. 

For my own personal study, I will read The Dawning of Indestructible Joy by John Piper. Every year, our Women's Ministry Director gifts the leaders an Advent devotional, and I look forward to seeing what she picks!

As we enter this season, I am trying to ease into it as much as I can. I'm not ready for the onslaught of joy and cheer, and I'm not really sure if I want it. If I had my choice, I would hibernate and spend the next month quietly reading and drinking hot chocolate, not leaving the house unless absolutely necessary. I would prefer to hide away to process my grief in this season, without the expectations of the season, without the endless list of holiday "to-do's." But that's difficult to find the balance with kids and still having to meet the demands of ministry. So I'm doing my best to simplify where I can, and turn my heart in anticipation and hope of our coming Savior. 

{iPhone Rewind} :: November

Aiden lost another tooth! He was so relieved because he actually swallowed this one {on accident}, but he didn't have to worry about it anymore!

Maddie studies our family calendar all the time. She has progressed to the point of pulling up a chair and taking notes haha.

Playing soccer on a beautiful fall day!

Bedtime reading of The Wingfeather Saga

Maddie asked to take a photo of the beautiful sunset :)

It's comfy weather!

Eli got to pick a prize in Sunday School, and he picked a Butterfinger for Papa. He asked if we could put it in "Papa's stash for when he comes to visit." Sweet boy :)

Science experiments are fun- yay! {except when they don't work- boo!}

We had a game night with some friends from church and the kids were introduced to Carcassonne.

Reading silly stories from Granny :)

We found a praying mantis in our neighbor's yard!

When the Christmas blow-ups reach the rafters, and the Grinch dances and sings...the errands Mom makes you run aren't quite as bad ;)

Diving into the world of The Wingfeather Saga

We celebrated Mike's birthday with fun cards and presents. We ordered pizza for dinner, since we were prepping for Thanksgiving, but you would have thought it was Aiden's birthday ha!

Ready for Christmas

The day after Thanksgiving, the kids were excited to get the Christmas decorations up. We spent the day decorating the tree, putting up the stockings, and putting up the outdoor lights. We listened to Christmas music, Eli put together some Christmas LEGOs, and we made some Christmas garland.

Silly girl :)

We made Leftover Turkey Wild Rice Soup for dinner {so yummy!}, and we enjoyed our Christmas-decorated home. We're ready for the season!

Thanksgiving 2025

For Thanksgiving this year, we had a couple of church members over for lunch, so we needed all hands on deck to help prep our Thanksgiving feast! We had a full menu, so we started a couple of days ahead of time to be sure to get it all done. But I had great helpers! 

We went back to our Pioneer Woman turkey brine and roasted turkey recipes from a couple of year's ago. I started cooking at 325, then raised the temp to 350, and I didn't have to worry about it being undercooked this time. Much better results :)

We made Mike's family recipes: his grandma's cornbread dressing and rolls. It's fun to pass down family recipes to the kids, and I love that they look forward to helping with these recipes. 

We also had mashed potatoes, honey roasted carrots, green bean casserole, corn, cranberry sauce, gravy, and (of course) pumpkin pie. 

The rest of the day was relaxing and enjoying our turkey coma :)  And of course, we couldn't finish the day without watching A Charlie Brown Thanksgiving. 

We had a wonderful Thanksgiving, and we are so thankful for the memories together as a family. We missed being with our extended family, but we are thankful for the time we had with members of our church family. We praise God for all the blessings that He has granted throughout this year.

LEGOs and Chipmunks!

For Eli and Maddie's 9th birthday, we celebrated with LEGOs and chipmunks!

Their birthday fell on a Sunday, so while they got to wake up to their usual birthday excitement and decor, we had to push some of their celebration off until after church. But we tried to still make it special by celebrating with their friends in Sunday School. They got to hand out cupcakes and their friends sang Happy Birthday, as well as prayed a special birthday blessing over them. 

Amen. 

After church, we got to celebrate at home. Eli and Maddie opened presents, and there were lots of LEGOs for Eli, and chipmunks and Calico Critters for Maddie. 

They made cards for each other...

...and read them to each other :)

The afternoon was spent playing and creating and imagining, but they did also get to play outside in the beautiful weather. And of course, there were cupcakes and birthday singing!

We got to zoom with Granny and Grumpz, and there were messages from so many people that love Eli and Maddie. It was a fun and special day, and I pray that they always know how much they are loved and cared for. 

Happy 9th Birthday, Eli and Maddie!