Deja Vu and a Guest Post

After two long days, we might have started to get some answers tonight. They have been treating Bethany for Colitis. Colitis is inflammation of the colon, specifically for Bethany, the transverse and descending colon. Basically, the area of her large intestine where it goes across her body and turns to go down the left side of her body is inflamed. As a result of that inflammation, the colon gets “weepy” and leaks fluid into the cavity surrounding it. This fluid is the build up of fluid that the original ultrasound found. This is what we know. The question has been what caused Colitis in a young, fit, very health and diet conscious, 31 year old women with no health problems? The doctor believes this is Ischemic Colitis. Ischemic Colitis is where a portion of the colon gets deprived, or starved, of blood for a period of time. This is typically seen in older patients or patients that have other underlying health concerns. The thought is that when Bethany was running on Monday, her body shifted the blood that was meant for this area of the colon away from the colon, and instead sent it to the muscles that she was using while running. Until this point, doctors believed she had colitis, but weren’t sure what type. Essentially, they knew the colon was inflamed, but there were multiple possibilities as to why. Even though the G.I. specialist believes this to be the case, it “fits”, it’s still not an absolutely definitive diagnosis. There is still the possibility that this colitis was brought on by a food borne bacteria/pathogen, making it infectious colitis. After much research and many, many questions, the reality is we may never know for sure the cause. What we do know is that we are here for at least the next few days as we are in this “watch and wait” period. They still need to make sure that this fluid in her abdomen is re-absorbed, and that the part of her colon that was deprived of blood is not permanently damaged, meaning she would lose that part of the colon and have to have a re-section done. Her doctors seem optimistic that she won’t have to have surgery and that part of the colon will wake up and function normally. Her diaphragm is also inflamed and the cavity that the lungs sit in, as a result of the inflamed fluid.

On Tuesday evening, with the doctors and ER team feverishly working on Bethany, my mind naturally begin to wonder; Why? Why her Lord? Why our family? What are you trying to teach us or prepare us for that we haven’t already learned in this difficult season? What did I do to cause this? I didn’t get very long into that thought process before the Holy Spirit reminded me that God isn’t conditional. He is ABSOLUTE. Unchanging. Constant. Steady. In His sovereingty and grace, He is Absolute. It’s not for me to always know the answers, the why’s and the how’s. I might not always know His reasoning, but I can always trust His infinite goodness. See even when I don’t feel it, or I choose to ignore it, God is always good. His ways are not my ways. As I’ve sat in this hospital the last two days, furiously researching potential causes and conditions, I’ve been reminded that it’s not up to me. Instinctively, I always try to control the outcome. If I can figure out the problem, than I can fix it. The common refrain there is I . I rely on me to figure it out, fix it, and prevent it and dedicate a large majority of time to that; when I should simply trust the Lord and His goodness. When “i” try to be the solution to the problem I rely on my own strength instead of looking to Christ for His. We may never know why, but what is for certain is that even in our darkest hour He is worthy. He is sufficient.

Once again, we have been overwhelmed by the outpouring of love and generosity. The calls, texts, offers of help with boys and to provide dinner, every single act of kindness has meant so much to us! The Lord has used you to encourage us in this time and for that we are so grateful! We truly have the greatest friends and family. We love you!

Brandon

Infusion Update and a Humble Birth

remicade-infusion-crohns-diseaseLast Monday we had Brandon’s second Remicade infusion. Everything went great! We were thrilled that there were no adverse side effects (other than being a little more worn out than usual) and we were encouraged because we felt like things were well on their way to “normal.”

Ha. I got a flat tire on the way home.

Hahahahaha.

It wasn’t really that funny at the time. Brandon was tired (and a little cranky that I had managed to “find” another nail) and wasn’t in the mood to play games with the air-filler-upper-machine at the gas station, that oh yeah, didn’t work and we wasted a lot of money on it and had to drive to another gas station and used that air-filler-upper-machine and a can of fix-a-flat.

flat-tire

Don’t worry, we got home safe and Brittney was able to pick up the boys from daycare, and only one child had a fever.

True story.

And all this after having gone to the doctor and having an x-ray on my back because I’d been in extreme pain all weekend. Yaaaaay.

Anywho. Tuesday. Tuesday was great. I hosted a “make-and-take” roller bottle remedy party where we all made our own essential oil roller bottles and it was so much fun! Plus, really cool to be able to mix these recipes up. If you weren’t able to come, we’re going to do another one again, don’t worry!

make-and-take-essentail-oil-roller-bottle-remedy

Wednesday was great. Thursday was great. Etc etc etc. Saturday was awesome because we did everything Christmas that day! I made the boys Christmas pancakes for breakfast, then we made Christmas cookies and went to the Christmas parade and that night Brandon and I went to a Christmas party. Seriously a great day.

christmas-cookies

Sunday morning Brandon spoke at church and did an amazing job. The best message I’ve heard him preach in a long time. I’m not saying that to downplay his other messages, I’m saying this to emphasize what a great job he did. He spent a lot of time preparing and I was captivated the whole time. I was so proud of him. It was one of those moments where I wanted to stand up and say to everyone, “That’s my husband! Isn’t he awesome?!” You know those moments, almost like a “Santaaaaa! I know him!!” moment where you’re bursting with pride and excitement and sunshine is threatening to spill out of your ears.

Brandon-speaking-church

Yesterday evening Brittney and I went to teach our first essential oils class together. Well, technically our second, but this was our first on our own, and boy was it reminiscent of the good ole Penny Filled Pantry coupon class days! We had a great time. We seem to just jive when we’re teaching classes and things just flow and its lots of fun and we end up laughing a lot. It was a great class and a really fun evening. Sup Monday. Whatchu got? Boom.

essential-oils-class-beginners

Today was going to be great. Today I had my department’s Christmas lunch at a nice restaurant in Greensboro and then I was going to go right to my Orthopedic doctor’s appointment for my back and they were going to tell me that “yep, just a few more days of rest and 2 weeks at the chiropractor aught to do it, and you’ll be good to go!” (Yeaaaaah, he didn’t say that.)

We finished lunch up a little early and I had about an hour until my appointment so I decided to run a quick errand. When I pulled into the parking lot I heard a funny noise that I thought might be my car, and sure enough, it was. There was smoke coming out from under the hood, too. That was fun.

The one thing that kept ringing in my ears was “Do NOT let a little car trouble ruin your day!” because I’m bound and determined that the devil is not gonna win. Not with me anyway! I mean, its CHRISTMAS, people!

I love Christmas, as I’m sure most of you do. And as Brandon spoke on Sunday, I realized that we spend far too much time worrying about traditions and lists and gifts during this time, and far too little time reflecting on the catalyst for the whole holiday season anyway. Brandon read an excerpt Sunday that described a young girl – a first-time mom – dirty and weary, with a new babe wrapped in scraps of cloth. I’ve thought about that over and over since he first read it to me last week.

If I let myself, I imagine a girl about my size, but much younger, with long mousy brown hair, and I can feel the pain she feels with each contraction. If I close my eyes, I actually feel my heart rate speed up with the anticipation of the next contraction. I remember how scared I was when I was laboring with each of my children, and I imagine that fear was multiplied for Mary, alone and in a strange, uncomfortable place. I didn’t give birth with dirt under my feet and bits of straw poking through my clothes and sticking in my hair. I gave birth surrounded by medical staff and all the people in the world who could comfort me. It was not outside, in the dark, in unsanitary conditions with the stench of animal waste nearby.

Our Savior had a most humble birth. He was brought into the world without sweeping grandeur and by the soft light of the stars above. We celebrate this quietly beautiful scene with gobs of red and green, to-do lists and frantically remembering to move that silly elf each day, and for some, credit card bills to boot. When I think about my own actions over this holiday season, I realize I’ve been much too focused on all the ups and downs and stressing about fitting in all our traditions and holiday clothes and how everything will come together just right.

Have you spent too much time focused on all the wrong things this month? And not that any of those things are wrong, but when I pause and picture that weary girl propped up against the rough edges of a wooden manger, and imagine the Savior of the world wrapped in dirty cloths – the first of countless times that He would humble himself – I realize that I’ve maybe lost my focus a little.

The back pain and the infusions and the car trouble are all background noise and a distant hum, when I think about the magnitude of the One who steers my path. The car can be repaired, and the other distractions can all just take a backseat for this girl’s Christmas season, because today, I choose to give thanks that a God who loves me, was willing to have his son enter this life in such a humble way and with the sole intention of saving the world.

Thankful

In the spirit of Thanksgiving, I thought it would only be appropriate if I shared a little of my thankful heart. I would have posted this on Thanksgiving Day, except I’ve been writing and re-writing this blog post in my head over and over for a week, and have sat down to write it, gotten up in frustration and walked away because I can’t seem to get out the words I want to. A thankful post seems like such an important post, ya know, and I want to convey all my gratitude in just the right way.

When you have a pivotal life event happen (or several in our case) you tend to get reflective and analyze the good, the bad, and the ugly. You pick out the little wins, and you write them down, memorize them, and thank God for them. You savor those breaths of fresh air, and remember just how sweet they taste.

What I’m grateful for creates a list so long, you’d be here for days reading it, but I’ll try to share just some of the highlights.

This year, I’m thankful for the two sweet boys who call me Mommy. I’ve watched Paxton grow and learn over the past several months more than I ever thought possible. He’s like a sponge – soaking up all that school has to offer. He randomly spouts out new facts, or things he’s learned and I’m just amazed. I’m absolutely convinced that he’ll be one day running for President, or on stage leading thousands of people in worship. He’s got personality just oozing out of him, and I see so much potential. Maverick can count to 10… well sort of. Sometimes. It’s the cutest thing. He sings “Itsy Spider” and “Twinkle Star” and “Rock a Baby Bumblebee”. Precious. Seriously precious. And ever since we put up our Christmas tree, each time he walks into the living room he puffs up his little chest and proudly proclaims “I do dat!” while he shoves one chubby little pointer finger through the air toward the tree, that he did indeed help decorate. Be still my heart :)

I’m thankful for family who have sacrificed in so many ways to help us. I’ve made more than one middle-of-the-night phone call, and more than one of them has made the long trek to UNC Hospitals to be with us, toting things we need, or bringing the boys to visit their daddy. I’m thankful for family who have worked hard to make the times not scarred by hospital visits wonderful, strikingly normal, and filled with beautiful memories.

I’ve sat with my mother-in-law several sleepless nights in the Emergency Room, and am struck by her continual strength. She’s been through a lot, especially with her first-born son, my sweet miracle husband. I know when she looks at him she sees God’s grace and unending love. She sees a beautiful miracle of life that so many told her at first would never come to be. She trusted in the Lord almost 32 years ago and He spoke to her softly, whispering “I give life, and I will give it abundantly!” Brandon was born with spina bifida and defied all odds when he learned to walk, talk, and conquer life as any other child. Every time I see the mangled scar on the back of his neck, I whisper a silent prayer of thanks because I’m part of a miracle… My life intertwined with a miracle when our paths crossed and I became part of that story. I don’t take that lightly and I think that’s why I know – I know – in my heart of hearts that the Lord has great and mighty plans for Brandon. I think we’ve only barely scratched the surface to what the Lord intends to do in and through Brandon, and quite honestly I feel so blessed to be along for the ride!

I’m thankful for my sweet sister-in-laws. I have 3 of them and I love each of them. They have each been so helpful, so giving, and so sweet to us through this past {crazy} year. Each in their own way, they have blessed us, and I hope they know how much they mean to me. I adore my sister-in-laws and count them as some of my closest friends, not out of obligation, but because I truly love each of them. I couldn’t have picked better ones if I tried!!

I’m thankful for my mom, my brother and my step-dad. I think I have the strongest, bravest family ever. My sweet mama has suffered her fair share of trials and has emerged from each one, stronger than before, and more beautiful to me. I know this isn’t a Mother’s Day post, and I’m trying to keep this short so I don’t weep like a little baby all over my laptop, but I adore my mama. If I can be half as wonderful as my mama, I will be a good woman, and someone to be proud of. She thinks of all these unexpected ways to bless us – ways I never would have even asked or thought of – and does it so quietly and lovingly, without ever once expecting a single thing in return. Like I’ve always said, she convinces me over and over she wants the burnt piece so I can have the best part of the pie. What a wonderful person.

Deryl has been so selfless and giving to us. He drops everything to drive down here with my mama and help with the boys, or to support her and us while she’s helping us. He endures hospital visits and sends sweet and thoughtful gifts for Brandon. I cannot say how blessed Brandon and I feel to have Deryl in our lives.

And my brother… my brother is like me, but better, and with all the best qualities in a person… and taller of course. But seriously, he’s much more selfless than I, more giving than I, and far more humble than the average person. He’s also really funny, super attentive, and one of the most thoughtful people I know. He’s got his own family to provide for, yet he constantly checks in on us and I know he would do anything for us.

I’m thankful for a good job… no, a great job. Its a great place to work, and I have wonderful coworkers. I’ve been able to be with my husband when he needed me, be nurse to my boys when they are sick, and attend school functions and conferences when need be. I’ve learned more in the last year and a half than I have in a long time and I love that I work in a place that values that. I say it all the time, but I feel really, really fortunate to have the job that I do.

I’m thankful for our journey. Some people have said that we’ve handled this whole season with such grace, but honestly, I don’t know how we’ve acted, I just feel blessed that we’ve been dealt the hand we have. If we weren’t going through this trial, we would not have experienced the many blessings that the Lord has bestowed on us over the last few years. I’ve gotten to see the Lord provide for us in mysterious ways. Ways that don’t add up on paper, and don’t seem real when you say them out loud. I’ve gotten to sit quietly in the dark, listening for His still voice, and feel Him take control. I’ve watched friends and family act out their commitments of love for us and seen the true meaning of community. I’ve had to depend on the Lord, and that can be so hard, especially when I think I can do it all myself!

I’m thankful for so many things – the roof over our heads, the cars we drive, the food we eat, the things we have, the church we’re part of, the jobs we work, etc – but I’m think I’m most thankful for the way the Lord has taken care of us, and the friends and family we have along with us for the ride.

I remember sitting in my house one night a few months ago, in the midst of my son’s fifth birthday party, surrounded by 60 of our closest family and friends, and thinking, “this is what it means to be blessed.” To have family come running in from all directions, alongside us, to lock arms and keep pace with us. They ran the grill at the party (all the parties actually), made the cupcakes, made food, served food, loved on our guests, built and lent party props, etc. And I sat there, surrounded by them all, watching them love on our family. We are loved. So loved. And deeply, beautifully blessed.

For that, I am thankful, so very, very thankful.

 

Update After Remicade Infusion #1

Mini update after Remicade infusion numero uno:

first-remicade-infusion

Many of you have asked how Brandon’s first Remicade infusion went on Monday. I think it went about as well as it could go! Praise the Lord!

His appointment was in the afternoon (strategically scheduled during the latest appointment slot they offer so he could work most of the day and then be able to go home right after) and since I was in South Carolina for my uncle’s funeral, Brandon’s mom went with him. He was given an iv and the nurse programmed the iv to infuse the proper amounts at certain intervals, in the amount that was right for his body weight. The infusion took about 2 hours and then he was required to stay for another 30 minutes so that they could monitor him for signs of allergic or adverse reactions.

The nurses all recommended that he bring a laptop/ipad/book or something else to do while he’s there, since he isn’t able to do anything else but sit while he’s being infused. When the infusion was complete and he had waited the half hour, he was allowed to leave and we were told that most serious adverse reactions occur during infusions 2 or 3 in the onboarding process.

He has his second round of Remicade in 2 weeks, and then 4 weeks after that will be the third round and last in the onboarding process before he will begin his every-other-month treatments.

I know you’re probably wanting to know… does he feel any different/better?

YES!

Of course, I’ve been the annoying wife with my questions:

“How do you feel? Have you gone to the bathroom? Does your stomach hurt? Are you tired? Do you feel better? Do you feel different? Are you breathing OK? Do your ears hang low? Do they wobble to and fro? Can you tie them in a knot? Can you tie them in a bow?”

OK, OK, just kidding! I didn’t ask if his ears hang low but I should have! All the other questions I’ve asked though… approximately 35 times each day. Anyway, when I asked if he felt any better he said “I don’t want to jinx it, but I think I do.”

How awesome is that?!

I know what you’re thinking, because I was thinking it too… Is it all in his head? Is it more mental than anything else?

Maybe. But that’s OK. Because even if it is partially mental, that helps anyway with relieving some of the stress. Because this dude has been anxious. I hope he doesn’t mind me telling you (we’ve been pretty real with yall so far, so why stop now, huh?!) but he has been. He’s had pain and that has skyrocketed the anxiety. He’s been (over)analzying every little feeling, every little twinge, and when the pain started, he really (semi)freaked out. SO, I think that when he went for his Remicade infusion, just knowing that he was on medication was a HUGE relief to him. It was like he could finally let out that breath…

“I’m gonna be OK. The Remicade is going to control the Crohn’s.”

THANK YOU for praying for him (and me!) and for checking in with us over these last few days. So far so good and we’ll keep you posted on how he does with the next round!

Take THAT Crohn’s! #boom

If you missed some of our Crohn’s disease story, you can catch up here.

 

Hard days and infusion treatments

Today will be a hard day. Today, we will bury my uncle.

Early Friday morning I got a phone call that he had passed away very unexpectedly in his sleep. I am devastated for my aunt and my cousins. The most heartbreaking thing about losing a loved one is knowing that hole they left will never be filled. No matter what happens, it will never be the same. Life has shifted course and it’s a different road we’ll travel now. The road without him.

We rejoice in knowing that he is with the Lord and that we’ll see him again. But our hearts are heavy, so, so heavy with the ache of this loss.

Empathy-vs-sympathy

What do you even say to someone who has lost their best friend of 40 years? There are no words I’ve been able to come up with. I recently watched a video on the difference between empathy and sympathy and there is a striking difference. Empathy allows for that silent agreement that there is nothing – said or done – that can make it better, but comfort in recognizing the incomprehensible sorrow that person is going through. The illustration was like this:

Empathy-sympathy image

Today I feel compelled to tell you to connect with your loved ones. It’s sad that it takes an unexpected death to prompt me to do this but life is so short. Don’t just “hug your loved ones”, connect with them. Make time to be with them. I wish I’d spent more time with my uncle.

Don’t let life pass by without making those you love feel important. Take the time to make memories with them.

Virginia-tech-college-roommates


 

This past weekend, my college roommates and I got together and went to the Virginia Tech football game. We made an oath of sorts when we graduated to get together at least once a year. To make it a priority to plan ahead and schedule time to see one another, to travel the distance between us, however far apart we may be, and reconnect. It’s been almost 10 years since graduation and we’ve been there for each other’s weddings, gotten to know each other’s kids, and shared in the joys and sorrows of life together. Because we made it a priority. We could have easily let this weekend pass us by… Because it was too much trouble to arrange childcare or travel or had other things take priority. But instead we cleared our calendars and we were so glad we did.

Connect with those who matter most. And if you’re reading this, allow me to capitalize on this moment and invite you to know Christ. He is our ultimate comforter and protector and wants a personal relationship with you. I know I’ll see my uncle in heaven and I take great comfort in that. My cousin put it so beautifully:

“I’m thankful that death is not the end and that through my faith in my Lord and Savior Jesus Christ, I will get to see my Dad again one day. If it were not for my faith, this pain would be unbearable. I pray for those of you who do not know the Lord to accept Jesus Christ as your Lord and Savior who will guide you through the painful trials of life and it will be the best decision you will ever make!”

Please join me in covering my aunt and cousins and our family in your prayers today, and in the days to come. Pray for supernatural peace and comfort to overwhelm them.

Also, while I’m asking, please pray for Brandon today. He has his very first Remicade infusion today. I’m upset that I won’t be able to be there, but Brandon has been so understanding and insisted that I go to the funeral. I’m so grateful to his mom for rearranging her schedule so she can be with him, and to my sister-in-law for helping with the boys. We aren’t sure how Brandon will respond to the treatment, both immediately and long-term, so we covet your prayers that he would have no adverse reactions and that it would be successful!

It’s been a crazy ride, this life, the last little while, but more than ever now I’m so grateful for the people I get to spend it with.

On Loss

The last week has been a blur.

Between the boys fighting “the crud” all week, trying to work from home (while playing nurse to my boys), attending a 2 day conference for work, and then giving a big presentation at work on Friday, my week already felt like it was flying by. Plus, we had plans to go to Virginia Friday evening to celebrate Thanksgiving with my family and then go to the Virginia Tech football game on Saturday.

My alarm went off at 4:45am Friday morning, I spent some time talking to Jesus, and then went to the gym for a pretty killer workout. I rushed home like usual, and began the morning flurry of activity – you know, making lunches, cooking breakfast, showering, getting ready, picking out clothes, checking the bookbags, etc – then, curling iron poised over my head, my phone rang. I glanced down and then my heart skipped a beat because I saw Mom’s picture flashing on the screen. Phone calls before a certain time in the morning and after a certain time in the evening are never a good thing. You don’t casually call someone at 7:29am to shoot the breeze.

My mom delivered the news that my uncle had passed away in his sleep, very unexpectedly, at the age of 56. Before we go any further, let me tell you that my uncle knows the Lord and is singing praises to Him on the streets of gold right now, so while we are heartbroken that his family here gets no more earthly time with him, we are rejoicing that we will get to see him again.

It’s odd. I’ve experienced loss before, but it’s been different. My first experience with death was when a next-door neighbor passed away  during my childhood. We went to his funeral and my parents did a great job of explaining things to us and making sure we weren’t scarred from the whole ordeal. The next time I experienced loss, I was much older, and it was much closer. My best friend’s dad died after an extensive battle with cirrhosis of the liver. He had had a liver transplant and we thought maybe that would be the turning point, away from hospitals and sickness, but instead, one cold December day, I got a phone call from my mom. I remember it so vividly.

I was walking back to my dorm in the cutting Blacksburg wind, and had several textbooks in my arms. I heard her say something like “Bethany, Mr. Scott didn’t make it.” I hadn’t quite made it to the door of my room yet, and remember dropping the textbooks and papers in the middle of the hall, and crumbling to my knees. Then, gasping and crying and screaming, I sat there until my best friend came running around the corner to wrap me in her arms.

I remember thinking “Not him, not now! It’s too soon! This can’t be real. What will they do? How will they go on?” This man was like a second father to me. A man I had memories with, who was the one who seated me every Sunday morning at church when I was painfully shy when I was younger, and who more Sundays than not, sat with me instead of having someone else come be “my friend.” This man took me on multiple vacations with his family – even Disney World! How loved I felt by this man, that he would think enough of me to include me in his family’s vacation plans to the happiest place on earth.

And the worst part… the worst part was that he was madly, deeply in love with his wife, and she with him. There’s not a lot that seems more cruel than to have the one you love taken from you, far too soon. My heart ached. My heart literally hurt for her, and for my best friend and his sister. I remember being held up at the elbows by my parents at his funeral. I remember struggling to breathe and feeling as though my insides were imploding.

I remember thinking, “How will they go on after the loss of their husband/father?”

Now, more than a decade later, I’m sitting here thinking about my aunt and cousins who just lost their husband/father and I’m thinking about my own loss. Not just about my uncle, but about my own father. I’ve realized that in a very unconventional way, I have spent the last 12 years grieving the loss of my dad. I grieved him when Mr. Scott died, I’ve grieved him in every little girl holding her daddy’s hand, and I’m grieving him again now, with the loss of my uncle. My dad isn’t dead, but I have mourned the loss of our relationship. It’s taken over 12 years, but I think I’m finally able to recognize this.

As I have prayed for my aunt over the last few days, I have practically begged God for His supernatural comfort and peace to overtake her. I have realized that grief is a long, slow, and very painful process. You can drown in the “why’s” and “how is this real?”s and the despair can suffocate you. I hope you’ll join me in covering my aunt and my cousins in prayer. Tomorrow, when we bury him, it will be a difficult day, but not the most difficult, because then Tuesday will come, and then Wednesday, and each day after.

Decision Time For Crohn’s Treatment and a Thankful Heart

I’ve been trying to write a new post now for a week. I can’t seem to come up with anything interesting to say. Not that this means our life isn’t interesting, I mean, c’mon, we live with two little whirlwinds. Hurricanes I call them… Hurricane Pax and Hurricane Maverick. Fitting, isn’t it?! They’re strong and ferocious little gusts of wind, who blow through a room quickly, starting quietly and ending with a roar, and when they’re gone its as if everything has been tossed in the air and left to fall where it may.

Anyway, our little hurricanes celebrated Halloween (more to come on that later), and its been raining on and off. An important marker in this stage of our lives is that we’ve not visited a hospital in the last week, and we’ve done lots of research on medications and therapies and alternative ways of treating Crohn’s Disease. You’ve been so helpful. We’ve had so many people reach out to us and give us advice, or opinions, and real life experience. Don’t tell Brandon, but I even joined a Crohn’s support forum online. It sounds a little hokey, I admit, but there’s a weird sense of solace in reaching out across the cyber waves to ask someone else going through the same thing, what they would do, or what they did. Even better than that has been all the messages and comments from people we know or people who know us through someone who knows us. We have wrestled with what to do about a long-term treatment plan, and are still trying to make sense of the best course of treatment for us.

This week, I’ve had several moments where I have felt so overwhelmingly blessed, I just have to share. I’ll start with my most recent “moment.”

Just the other day at work, a woman I work with, who just recently had a baby, came back to work for the first day after the birth of her son. Her son is still in the NICU. He’s had 2 surgeries since his birth just 12 short weeks ago. I told my coworker that she looked great – and she did – but I could see the worry in her eyes. I could see the underlying stress of navigating a hospital system, with a precious family member at the center of it. I wanted to reach out and hug her, but was afraid of tipping over that precariously balanced set of emotions, the tears threatening to flow at any moment. Instead, I went back to my desk and carefully crafted an email to her, offering a promise to pray for her, and a listening ear if she needed it. On my way home that day, I cried. I cried for her because I know all too well, that torn feeling she has. The torment of fulfilling only half the duties of wife, and half the duties of mom, and barely able to concentrate on work.

I realized how blessed I am, because I’m not sure how I would handle it if my baby were the one in the hospital. I barely held it together, and my husband is a full-grown man. I have another friend whose baby was recently in the hospital for weeks, and at one point, had a very dim prognosis. These women are heroes.

The Crohn’s Treatment We Chose and Why…

When I think about our journey, I thank God for the brevity of our hospital stays, and for the diagnosis that we have. My husband could be facing something much, much worse. Don’t get me wrong, Crohn’s is no picnic, but we are on the verge of getting this whole thing under control (hopefully!).

We found out that Brandon has not yet formed antibodies to Humira, and since his physician really (really, really, really, really, really) thinks that Remicade is his best chance at getting the Crohn’s symptoms in remission, he has decided to switch to Remicade and his first infusion will be next Monday. Brandon is more than ready to begin, and has been fighting feelings of anxiety because he hasn’t been feeling that great and can already tell that he’s headed back down the road to another blockage if we don’t get it under control quickly. We canNOT keep having pieces of his intestines removed, so you can understand his anxiety. The way his physician put it was a little blunt, and basically scared the mess out of us:

You have to be on medication that will control this. If you don’t, you’ll end up in surgery after surgery, with the eventual result of no intestines, and then you’ll be fed through a tube and never taste food again.

Well ok, then. Sign us up. When do we begin?

But seriously. We begin (well he, obviously, but I’ll be there with him and feel like this is we a “we” thing ya know) with an on-boarding round of infusions, and then we’ll settle in to an every other month infusion schedule… for life. I’m nervous for several reasons:

  1. Is Remicade going to work?
  2. Is Brandon going to respond positively or negatively to the infusions in the hours and days following?
  3. Will there long-term negative effects on Brandon’s body?
  4. Will we be able to afford this treatment… forever?

I have to say, in my life, there have been a few moments where I’ve felt like what was happening was a little surreal. Like the moment where I realized I was a pastor’s wife. What? Me? **Looks over shoulder** I never dreamed in a million years that I would marry a pastor. Is this the life I’m leading?! Wow! I feel so grateful that the Lord chose to bless me!

Another was that time that I gave birth to a second baby boy and realized that I was a MOM, to TWO LITTLE BOYS. It was so surreal. I remember thinking “I still feel 21 years old. Certainly I can’t be mother of two, can I? These precious children are… MINE?!”

Then there was that time when half a year had passed in a blur and a surgeon came walking into a hospital room (OUR hospital room) to tell us that he had just taken out 18 inches of my husband’s small intestines. Surreal. Is this our life? My husband (MY HUSBAND?!) has a chronic disease. Chronic diseases happen to other people, right? Not us. Bad things like this – like hospital visits and surgeries and injections and infusions – those things always happen to other people… right? I’m still a little in shock that this life we’ve been living, is ours.

But through all of this, all of these surreal moments and quiet cries for help, I’ve realized just how blessed we are. People have given of themselves, to us, more than we deserve and more than we can ever thank them for. They’ve paid for our groceries, fed our family dinner, made student loan payments for us, sent us cards and gifts and flowers. Sweet friends and family have given us memories, help with the boys, and my sweet sister-in-law even refused to let me pay her when she did my hair!

Brandon and I got a phone call this week that I almost can’t believe even happened. What this person said to me was so kind and so unexpected and means so much to us that when I got off the phone, we kind of had this eerie moment where we both agreed that things like that don’t happen to us. We usually do that sort of thing for other people! We feel guilty accepting help from others because we still feel so blessed. God has shown us that even though it doesn’t make sense on paper, He will provide. When we’re busy scrambling to figure out how to make groceries and bills and everything else work out, He’s smiling as He watches the UPS guy literally deliver dinner to our front doorstep.

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Our God is so good and I can’t help but praise Him for His goodness! My sweet family has been taken care of and so loved on, and even in the midst of uncertainty, I can rest in knowing I serve a great and mighty God.

I can’t wait to share some of the details of the last few weeks with you guys. You might not even believe it!

 

Crohn’s Awareness

Someone shared a Crohn’s story with me today, that has gone viral over the last week. The story describes a young man who has Crohn’s disease and his insisting that Crohn’s needs more awareness.

I was moved by his story for several reasons. It resonates with me. With us. Outwardly, Brandon may look fine to you. But what you may not see is that we always sit near the back, him on the end, at church, sports events, concerts, and other crowded events. Why? Because Crohn’s is a cruel, unpredictable disease that rears its ugly head anywhere.

We choose to drive our own vehicle if we’re going somewhere with anyone. Why? So we can have control over pulling over if we need to take a bathroom break.

He makes food choices, good and bad, that he sometimes agonizes over. Until this past weekend, Brandon hadn’t had a salad for months. He loves salad, but sometimes salad doesn’t love him.

What you may not see, are all the clinic visits, and the routine labwork done. When you’re watching your favorite tv show at night, we’re talking about costly injections and infusions and lab results and googling support groups and poring over Crohn’s forums.

On the outside, you see a fun, loving, handsome, able-bodied Brandon. You might not see the anxiety, or the heart-wrenching confessions of his fears.

Another reason this moved me, is this is what we’re afraid of Brandon’s future looking like. Did you know there is such a thing as people surviving by nutrition via feeding tube and never.eating.again? In a society that is so centered around food, this seems to be one of the cruelest things that could happen. Maybe I’m being shallow, but I want my husband to live a vibrant, full life, complete with food.

Thanks to us, you probably now know about Crohn’s disease, if you didn’t before. We are proud to be part of the movement in Crohn’s awareness, but sad that we have no choice but to be along for the ride.

Read this man’s story and let me reiterate and emphasize, Crohn’s is a cruel and chronic condition, and whenever you see Brandon, even if he looks fine, please continue to pray for him, because the invisible illness is very real and very present.

You can read more about our Crohn’s journey here.

A Week of Ups and Downs

This week was a bit of a roller coaster. I love roller coasters. Usually. Most of the time. If it involves Disney World. Not if it involves my emotions, or my family.

We went into the week really excited about our family photoshoot with Captured Love Photography. We had tried to plan a shoot before Brandon went into the hospital the first time this fall, but our plans were a little derailed and then after that, with surgery looming, we decided to put it on the back burner, because it wasn’t a priority financially. I’ll write more about this later but, for now, just know that we were able to schedule a date for a shoot, and the fabulous Erica was able to capture these beautiful moments of our family.

These two boys are our world.

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I love that almost 10 years later, we still giggle together.

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This baby makes my soul happy…

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Oh, only the heartbeat of this girl each day…

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I’ll share more of these gems in another post (they’re really all so good that I am restraining myself from Delk Family Photo Overload for you!) but wanted to share more of our roller coaster week with you.

Tuesday, Brandon went for his follow up GI Surgery appointment and was cleared to begin working again, with the very strong caution to remember that he was only barely 3 weeks post major abdominal surgery. Wednesday, my brave and handsome husband woke to his early alarm, got dressed, and hustled out the door to work. He was exhausted by the end of the day, but managed to make it the full work day.

Thursday, he got up and went back to work again, and ended up having to work late. I was really worried he was overdoing it, so soon after returning to work. During the day, he called UNC and was trying to figure out when to begin his Humira injections, as well as his other injection (the low-dose chemo medication). They arranged for him to come in for a follow up appointment the next day and suggested that his treatment plan would be changing.

Friday,during my lunch break, I drove to Target and Brandon called as he was getting out of his doctor’s appointment. He sounded so discouraged. I knew immediately that his appointment had gone in a different direction than we were hoping. He then proceeded to tell me that his GI doctor wants him to begin Remicade infusions, a drug called 6-MP, and another drug. The Remicade infusions would take the place of the Humira injections, and the 6-MP is another type of low-dose chemotherapy, and the other medication he wants to put Brandon on is for the visceral pain, which is basically like phantom pain, the pain that an amputee might feel on a limb they no longer have. Brandon has been worried over the last 2 weeks because he has felt pain, and thought that he may have another obstruction. Honestly, he was almost panicked over having this pain, and his doctor explained it this way: Brandon’s nerves in his intestines have only felt pain for so long, that that is the only thing his nerves know how to feel. This third medication is supposed to “reset” his nerves, so that they learn how to feel normally again.

Allow me to interject for a moment here… my husband has been in such intense pain for so long, that all his nerves know how to feel… is pain?! Even after the problem is gone, all his body knows is that it has been fighting itself. This thought alone is enough to make me weep. And weep I did. I put myself on mute, listening to my sweet husband recount his doctor’s appointment and then his feelings about it all, during my lunch break, sitting in the Target parking lot.

I listened to him tell me that the Remicade infusions take about 4 hours to infuse, and that he would have to take a half day off of work each time in order to go to the hospital to sit for these infusions. I wept – you know, the big ugly-cry kind of weeping – watching happy people go in and out of Target, and thinking about how sad I was at the thought that my strong, brave, handsome husband would have to strap himself into a hospital chair every other month to sit, weak and tired and defeated, to have a drug infused, on the off chance that it might work. Of course I couldn’t let him know how upset I was, and I had already used 7 Chick fil a napkins to blow my nose and wipe what was left of my makeup off my face. He asked me what I thought, and all I could get out was that I didn’t think I wanted to go into Target. I put the car in reverse, and drove back to work.

We are so discouraged. I’m discouraged for several reasons…

When Brandon was first put on Humira we were told that these types of medications were “use it or lose it” drugs. Meaning, once you get off of one of the medications, your body begins to build up antibodies to it and you can no longer use it because your body will reject it. The surgeon told us after his surgery 3 weeks ago that he was encouraged because it looks like the Humira was working.

So, let’s pause for a minute and talk about this…

Brandon has surgery in August of 2014. Was put on medication for long-term treatment in December of 2014. In January of 2014 Brandon couldn’t take that medication any longer because it made him feel so bad (extreme fatigue and nausea so bad it would wake him up in the middle of the night, and driving for work was absolutely miserable). Fast forward to the beginning of May when Brandon had to go to UNC for another scan (almost ending up in surgery then!) and was immediately put on Humira, and methotrexate was introduced at the end of July. The way we see it, Brandon was not on medication to manage the active Crohn’s for 9 months post his first bowel resection, and therefore the disease had time to manifest and cause another obstruction, then when he was put on Humira (and another round of steroids at the same time, too) it was able to control the obstruction until September. Since his surgeon saw no other places of active crohn’s while he was in surgery, we think the Humira WAS WORKING.

What we can’t figure out is why his GI doc wants to switch medications, and have us potentially lose that medication forever (remember, the antibodies? ^Read above again if you aren’t following). Plus, giving himself injections every Friday night isn’t the most fun thing in the world to do, but it sure beats having to take a half day off of work each time, to go and sit for 4 hours at a hospital, find a parking spot in the crazy parking deck (which he will have to pay for each time), AND pay hospital bills each time in addition to the new cost of this drug, which we were told could be anywhere from $6k-20k per infusion. Let that sink in for just a second. Yep, she told us it could cost up to TWENTY THOUSAND DOLLARS per infusion. C-R-A-Z-Y. Seriously.Crazy.

At this point I’m not even worried about the financial aspect of it all (the nurse is working on insurance and assistance programs yada yada yada, but our God can do anything and $20k is child’s play to him). I’m more concerned about switching medications and the lifestyle change (read: INCONVENIENCE), and how he’ll feel afterwards. Everything I’ve read so far indicates that he will be extremely fatigued the day he has an infusion, and lots of patients have said they get feverish/chills and some have to take Benedryl or other allergy medication to combat the side effects. UGH.

This is such a long post, and I’m sorry if I’m boring you, but I’m writing it for a purpose. I’d love for you to help us share this post in hopes that we get some feedback from patients with Crohn’s Disease that may have been through a similar experience. If you want to help us, please share this post with your friends to see if anyone can give us any advice. Our preference is for him to stay on the Humira and methotrexate and start the medication for the visceral pain.

I’m afraid that if we switch to Remicade and it doesn’t work, then we will have lost two of the biggest/best drugs out there for Crohns because he won’t be able to go back to Humira either.

I want his physician to see him not as just a small intestine that he has to control inflammation in, but as someone’s husband, someone’s son, someone’s father. My heart breaks at how discouraged he has been since his appointment, and I am trying not to show how anxious I am over it all. Tensions are running high and on the way home Friday night, Brandon was going to go to CVS to pick up 2 of the new medications, but I kind of panicked and suggested that we wait to talk with his physician again on Monday, because I just feel so unsettled about this course of treatment.

Maybe we’re all just a little tired, and ready to put this all behind us, but we really need some real life advice. If you can help us spread the word and get some advice from people who have experience with Remicade infusions, Humira injections, or Crohns in general, we would really appreciate it.

Confessions of an Imperfect Transition

Everyone has been so complimentary of us through all of this. They send sweet messages or call with kind words…

“You are so strong.”

“You are such a good wife.”

“You handle all of this with such grace.”

I feel like a fraud. If only they knew. If only they could see inside. If only they saw the selfish side of the “graceful girl.” The one who groans when the toddler gets up in the middle of the night… again… and she has to get up with him because Brandon can’t lift anything heavier than 10 pounds for the next 6 weeks. The one who picked up a pizza because cooking seemed too daunting.

My house has been a mess more days than its been clean since we’ve been home from the hospital. I blame it on the two little tornadoes I have, but really, I’m so exhausted I choose laying down over unloading the dishwasher, and today was the first time I washed a load of towels in over a week. I’ve let other people feed our family, and I’ve been really good at pouting and being grumpy.

I actually feel embarrassed that people think I’m handling this all so well. I felt so guilty that I actually apologized to Brandon (twice) this weekend for being such a crank. I knew I was in a mood and having a ‘tude, and it was like I just couldn’t get over it. Part of the ‘tude was the frustration over being trapped inside all beautiful, gorgeous fall perfect-for-apple-picking-or-pumpkin-patchin’-festival-going-or-outside-bein’ weekend long with a sick baby (who literally wouldn’t let me put him down), a recovering hubby, and a very energetic 5-year-old.

If you guys only knew…

I hope I’m not the only one out there that feels like this, but in the thick of it all, it certainly feels like I’m a failure. Like I’m a beautiful work of art with a tiny crack that’s threatening to splinter and shatter the whole thing into a million ugly pieces. I mean, dishes piled in the sink, books and toys and shoes scattered all over the floor, picking tomorrow’s clothes out from the clean laundry pile that’s taken up residence on the couch. Walking past the dish towel on the floor because the toddler is just going to pull it down again anyway. Grumbling that the trash is overflowing, and then realizing that I’m the only one who can take it out for the next 6 weeks since he can’t lift it. Resolving to put my big girl pants on and mow the grass myself in practically the same breath that I’m vowing to let it grow, because danggit we’re going thru a season here, people, and if the HOA has something to say about it, then say it!

A mess. I’m a mess yall. This smile and straightened hair is all part of a facade. Please don’t think I have it all together. Don’t look to me and say “such grace” or anything along those lines, because honestly I feel like a flop. There are days when I semi have it together, and moments where I feel encouraged and like I can conquer the world… and then I spill coffee on my shirt on the way to work.

At this point, I’m just asking God to keep Brandon from getting whatever plague the toddler’s daycare friends decided to share with him, and for matching socks for the kids each day. I consider it a bonus if I’m dressed and out the door on time. Because let’s be real, a lot of times, I’m dressed, but I’m not on time. Like that one time – last week – when MY CHILD GOT HIS FIRST TARDY at school. Yep, mom of the year award. I felt like I was branding my child with a scarlet letter when the school secretary handed over a FLORESCENT LIME GREEN tardy pass for him to carry all the way down the hall. Fact: Paxton asked me this morning if he was going to be tardy again, and if I was going to be frustrated about it again. Oops, guess I didn’t hide the fact that I was a little more than irritated that I made my child late for school for the first time ever. Ugh. Mom fail.

I can’t wait for things to be back to normal… whatever that is. I was off to a good start when I threw 3 ingredients in the crockpot and called it dinner. Yep, I was rocking it. Delicious victory was mine…

But on a serious note, through my cranky-feel-like-a-failure moments, I have come to realize that in my own might, I will fail, but if I rely on the Lord, He will certainly do more in and through me than I could ever do on my own. I am reminded of one of my favorite verses:

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

I think I’ve been tired… emotionally, spiritually tired. I whispered weary prayers to the Lord in most waking moments over the last few weeks, but I don’t know that I’ve fully surrendered the battle to Him. I’ve tried so hard to do so much by myself, but He’s there waiting… wanting to bear the load for me. If you’re tired, you should try it. Surrender your burdens to the Lord, and see how he renews your strength. How you will feel refreshed, and like new. In Luke, we’re told to daily take up the cross and follow Him.

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. John 16:33

Well that’s encouraging! The one who has overcome the world is on our side and wants to carry our burdens. I feel refreshed and renewed and I hope that if you’ve been trying to carry it all on your own – all your family’s worries and burdens – I hope you’ll be able to lay it down.