Entry 95: BTN Harper’s Story

 Gosh! Sometimes you’re just reminded how lucky you are for the people who are in your life. You know it’s natural for widows to get lots of support and attention after a loved one passes. But whether it’s 7 days, 7 weeks or 7 months, that fades naturally. As life continues to go relationships change and at times this causes me to feel all those big grief feelings again. Worried about losing pieces of Brian along the way. But here we are 7 (almost 8) years later and the love and support continues to surround us. Shortly after Brian passed, Brent authored a book for Harper all about her dad from her own perspective. We often read it when she’s missing him extra. We’ve carefully treasured the copy we’ve had held together by staples and a thin piece of duct tape. Well today we received our official book book of Brent’s awesome story. We are

so thankful for this treasure that will now last forever. It’s also an amazing symbol of all the support that we continue to receive. How amazing that 7 years later, the attention and support for this widow and her girl hasn’t faded. We love the continued reminders of love, friendship and community. 

Entry 94: Hell in the Hallway

 With cancer, we always played the game of will cancer cancel/interrupt this plan we are making? Now with Crohn’s we play the game of is this a normal random thing that happens to a kid or is it Crohn’s? 

Harper has been having was we call “bubbles” in her mouth. They started out small, one at a time, inside her lip. They were clear and literally looked like a bubble landed there. Now she’s getting bigger ones on her lips and once one heals, the next one pops up. Pre-Crohn’s I would’ve thought nothing of it. I would’ve called it a canker sore and gone about our business. But now we have the game of is it Crohn’s? We asked the experts both GI and pediatrician. Next step is dentist. Luckily they don’t hurt her, they’re just annoying. But in the meantime they want to check Harper’s calprotectin again. That’s the original frozen poop test that showed us Harps Crohn’s. Her level was 4500 and 50 is normal. It’s also the test that gave us the magical 49 number showing she was in remission. I’m not excited to retest. It brings a lot of what ifs. And a lot of anxiety. My friend Cally said it best, “that the space between problem coming up and next steps is the hardest… you have gotten through this phase before and will again but it’s hell in the hallway right?!?!”

Amen! It is hell in the hallway. I don’t want to borrow trouble and if it is Crohn’s maybe it’s just a quick little round of steroids to zap it. But as we approach day 600 of SCD, a mighty feat in itself for a 10 year old, I pray that stupid test stays below 50, and we can look back at this hell in the hallway as a minor bubble. 

Entry 93: Seven Years

 It’s kind of unbelievable. Brian’s been gone for seven whole years and Harper has been alive for ten. It’s absolutely wild. Time does not stop. This anniversary has hit me harder. Is it because life is really really happy? Is it because this feels like a big milestone in Harper’s life, double digits? Is it because as time moves along I’m surrounded less by people who knew Brian and more around people who know of him? Is it because 7 years feels like such a long time to not see someone you love? Is it because he’s been gone longer than we were in a relationship?  I can’t say. What I can say is he would absolutely love his ten year old!

What Brian was super great at was relationships. Whether it was insulting texts, personal playlists, or reading name tags and using the name of any and every employee, he made people feel seen. I feel guilty/sad at times when it feels like I’m not doing as good of a job as he would at maintaining all of our super important relationships. However, he would love to see how Harper builds relationships with her friends. She’s so thoughtful and concerned how her friends are feeling. She is silly and constantly giggling with them. She’s totally obsessed with Taylor Swift and loves music in general. He would LOVE sharing details about each and every song with her. She’s freaking brave. Not only with her medical stuff but she tried out for drama having to sing a solo, do a monologue and a cold read all on stage by herself. He would eat it up to see her perform.

I feel sad for what he’s missing out on. He’d love to meet Andi, who is the cutest little “stinker” ever! He would make fun of Tori but also be so cute holding her new baby. He would absolutely love Adaline’s exuberant personality and would totally feed into her energy. I want to know what he thinks about all the changes at school. Would he be shocked I’m in admin? Would I even be if he was still alive? Like dad said, would they have even moved here? Thank God they did. I miss him keeping me in the loop on all the tiny details of the NFL. I miss the mundane. The sitting on the floor of Harper’s room and giving her all of our attention for hours with nothing else being important. I miss sitting on Trey and Suzy’s couch every weekend and doing life with them. I miss his ridiculous poses, his voice, his spontaneity, his wild ideas, and his randomness. 

There’s so much good that has come since he’s passed as well. I’m thankful for the perspective that Dr. Bubis gave us on focusing on quality of life in each and every decision even when they aren’t medical related. I thankful for all the travel I’ve been able to do to National Parks that he loved. I’m thankful for the new problems that pop up that don’t seem quite so important because what’s harder than losing your husband. I’m thankful for my new family and how loving and understanding of grief they are and how they treat Harper like she’s one of their own from he very beginning. I’m thankful for Josh who feels like he was picked specifically for me, for us. I’m thankful to be healthy and getting to exercise and feel stronger. I’m thankful for our home that I was only able to buy due to Brian’s passing. I’m thankful for how he continues to provide for Harper through the social security money that comes monthly. I’m thankful for being a support to other widows or even be able to love on friends who suffer big loses because I kind of get it. I’m thankful mom and dad moved close and are so generous with their time. I’m also thankful for this blog. To read back through the raw emotions of days after. To remember the strong feelings even if they make you sob all over again. To reread annual recaps and know that even though time moves on, like seven years of time, Brian’s memory lives on and the love never ever goes away. 

The best thing from him always and forever will be Harper and she is 10! A decade!  She’s incredible. She’s works hard. She loves school. She’s into everything: gymnastics, drama, chorus, rock climbing. She loves her momma so much and is so affirming. She aims to please which is sometimes hard for when she makes a mistake. We are working on it. She loves being around people and always wants to hang with friends. Her memory is ridiculous. She is so spoiled but so so grateful that you just keep doing more for her. We had an amazing time celebrating with her Buc-ee’s friend party and her surprise Disney weekend with some of the lightning squad. It felt so good to watch her aunt and uncle spoil her. It felt good to be around people who knew Brian even better than me. Even though this January 22nd feels harder than most, we celebrate. We celebrate Harper! We celebrate having such a great love that even seven years later it feels so hard to be without. We celebrate our new life and continued happiness.  I am

so thankful for everyone who loves us whether you knew Brian or not. I can only imagine him beaming about how well his girls are loved! As time moves on I’ll continue to ride the wave, where it takes me ❤️⚡️ 

Entry 92: Yes Day!

 365 days ago, the idea of making it to the one year mark on SCD happy, healthy, and full
seemed unfathomable. It all felt hard and so restrictive. Now, looking back, all I can see is what a strong, resilient, badass I am raising. In the beginning when we started the SCD diet, we celebrated every day and every week that we managed this new way of life. At 6 months we celebrated at Disney. We rewarded every win. Here we are at one, whole year. "Yes" Day!

At the doctors recently when discussing being in remission, Harps said to me, "I know you are proud mom, but it doesn't feel like a big accomplishment." If only she knew that using food as medicine to put yourself into remission when the world around you uses food so differently is a HUGE accomplishment. It's hard to feel left out, different, or even like you're missing out. But for 365 days this little chick has chosen to follow the rules and find joy in new food and treats. When I look back at our food photo diary from the early days, I am amazed by what she eats now. It is truly incredible. We honestly couldn't do it without our chef, Dot. He takes requests. He is creative with making recipes match the guidelines of SCD. He'll prepare seven days worth of meals to make overnight camp possible. He's had to change his lifestyle to support and accommodate our needs. He serves us so well. We are so lucky.

So today, 365 since we decided to try SCD to treat Harper's Crohn's, are celebrate with YES! Where the answer to every request is yes! Of course life cannot go as planned. Bella got injured this morning and needed the emergency vet. Of course I was an emotional hot mess and it happened right at the beginning of the day. She will be fine but I cried for all the reasons, but mostly for how much I was looking forward to celebrating Yes Day with my girl. Don't worry! Dot stepped up again saying yes while I was getting Bella tended to.

He said yes to:

• a make over complete with mascara
• playing tag in the house
• being a horse

When when I got home, the yeses continued! Here is what we said yes to celebrate our girl's giant accomplishment:

• a TV in her bedroom
• making her normal honey candies in the GIANT butterfly mold
• drawing Yes Day decorations as a family
• a new free app on her iPad
• Family tag in the house (this is the one that surprised me the most that she seemed to think was the best)
• Target shopping with friends
• a bike ride 
• Watching the movie Yes Day on her new bedroom TV
• Downloading Roblox for the day and playing with her
• Pouring a bucket of ice over Dot's head
• Nail Salon (closed by the time she asked for it, so we are saving it for later this week)
• Walmart Shopping complete with taco slippers
• Bluey watching PJ party with neighborhood buddies in her room
• a make over for mommy
• a sleepover in mommy's bed

I hadn't seen the Yes Day movie before today, but it said a Yes Day must be earned. She definitely earned this! Here's to hoping and praying that SCD continues to work. Harper continues to be strong and feel good. 

Entry 91: Six Years

 It’s kind of unfathomable that it’s been that long without the ridiculousness and love of Brian here with us everyday. In the season leading up to the actual day he died, I’m reminded of the amazing community he built for us. I was smart and during all the wait time in Hospice, I took a screenshot of all the kind words people posted on social media. A few days ago before work, as I read them in my car, I had one of those really good cries. You guys said the kindest things about us both. It touches me that these comments weren’t just said in the moment because we knew things weren’t going well. But these are the people who send words of affirmation (my favorite love language), who still check in, who still share special and sometimes inappropriate Brian memories. The people who surrounded us before, during, and after cancer. You continue to show up for our family and in turn show up for him.

Although grief never goes away, it does get more manageable. Those early days/months/years hurt tons. Today, although I get a lump in my throat and tears in my eyes while typing this, I can think of how grateful I am to have been his person. I was the lucky one.

I’d give all the things to have him experience Harper now. I think that’s what I miss most. Him being her dad. He would be more obsessed with her than he was when she was a baby. If you knew him then you would know he was beyond obsessed. He would love her humor. He would love the way she knows naughty things but is waaaaayyyy too good to ever use them an inappropriate times. He would love her stories about her random third grade drama. He would threaten to fight anyone who hurt her feelings. He would buy her anything she wanted and he’d probably have his own Roblox account to join her in her most recent obsession. Overall, he would love the heck out of her. I imagine too that he is so grateful for the way we are both loved now.

So today, six years after we all surrounded his bed in Hospice as he peacefully passed, we get to hang with his cousins. Harper wanted nothing more for her birthday than to be with them. What a legacy and what an inheritance for us to be have these people. To be able to love all the people he brought us. People who spoil us. People who research Harper’s diet and make sure there is plenty of food accessible to her. People who love us just as we are. Brian is happy today knowing we are here celebrating. He may want us to cry a little so he can feel the most special. We know he loved attention. But today we have joy and love. And so much thankfulness that we made this life together. It’s also unfathomable that our baby turns 9 today! Today we celebrate them both. 

Entry 90: 49!!!!!!!

 My new favorite number!

Medical info: So calprotectin is a test they do and you have to bring in a frozen stool sample. This was the test that alerted us that Harper’s struggles this summer were most likely Crohn’s. The first time I checked the results for this test was in August while I was sitting in the pediatrician’s office. I cried. Normal range is 50 or less, 50-120 is borderline. Harper’s was a whopping 4,560. This meant back on the medical rollercoaster. This meant so many new unknowns. Tears because ugh!!!! And because researching Crohn’s is scary.

Fast-forward to today. Today is week 13 of using food as medicine. We’ve both been doing the Specific Carbohydrate Diet super strictly. Harper has had to make many sacrifices, figure out new normals, and just suck it up a lot these past three months. She’s really expanded her pallet and thanks to our chef, Dot, we have so many delicious options. Harper retested and did bloodwork on December 27th. Of course I’ve been checking every day. Bloodwork came back looking pretty good according to my untrained eye and the ranges they give, but we kept waiting for calprotectin. I kept telling myself I’d be happy with anything under 500 reasoning that these things take time. Gut healing and such. Well friends, you can imagine the tears when I opened the app and the number was 49!!!!!!!! The word normal next to it. What the what?!?!? This is all worth it. I know there is a lot ahead of us and things can always change. But how incredible is the power of being fortunate enough to use food as medicine and avoid the harsher meds while we can. I have to keep telling myself that if we need biologics (immunosuppressant meds to treat Crohn’s) one day it won’t be a failure, but how exciting that today is not that day!!!

I’ve known my girl is resilient however being different in third grade is hard. Never having a cheat day to look forward to is hard. Missing bagels and cream cheese (her number one want) is hard. But this girl is rocking it and it is so so worth it! “Mom can you please make me kale chips?” This is a quote from Harper today that never would have been uttered three months ago. 

Although of course no Crohn’s would be better, it feels pretty darn good that this little chick can do hard things, have amazing results, get to feel better, and keep a pretty good attitude most days! Hallelujah!!! A special thanks to all the parents who have done this diet before us, have done the research, post great recipes online, and tips and tricks on the Facebook group. It is such a needed resource. Also did I mention I’d be in the fetal position on the kitchen floor if I had to do all the cooking?! So thankful for Josh! 

But by the way, 49!!!!!!!!!! 

Disclaimer: We don’t meet with the doctor until the end of January so who knows what will happen then. For now we celebrate 49!!!!!!!!

Entry 89: A Diagnosis

 Harps is ready to share. She has been diagnosed with Crohn's disease. She will be starting a very specific diet to try to kick this shit into remission. Literal shit! This diet includes no sugar at all. AHHH! And no cheat days. There is no specific cause and nothing she did caused it. It is just what we have.

I'd be lying if I said I wasn't mourning the loss of her normal childhood. One with ice cream dates, cupcakes for birthdays at school, and not having to worry about anything but homework. Whoa is me! She already doesn't have her dad and now no sugar. Those are two of the best things. As always we are choosing a super positive approach. She and I have already brainstormed ideas like an edible arrangement for her birthday (her idea), trading in her trick or treat bag for money, and Target trips on those super hard day when she can't partake in things other kids are experiencing. If you have other fun ideas let us know! Luckily my life partner is basically a chef! 

Our care team is incredible and we got to meet them all. We also don't mind if you research but please don't share your findings with us. We've had experience navigating the medical roller coaster. I am so lucky to have such a positive, optimistic, and resilient little chick to do this with! The evening after her procedure she said, "Today was a good day!" May we all adopt Harper's attitude when life throws you curve balls!

Love to you all. No "aww poor Harpers" allowed. Positivity and fun ideas ahead! Also this momma promised to do the diet with her so here we come!