Entry 98: Camp Oasis

 When Brian first passed, I was writing blogs all the time. It is always for big feelings. Now it is typically when something heavy happens or on his anniversary, but this time it is for celebration.

I remember four and half years ago, sitting in the pediatrician's office and trying to figure out what was going on with Harper. We had tested everything and were just waiting for one more test result. The doctor hadn't received the results yet so I checked my Quest app and they were there. The number was high. Super high! And when I told the doctor I saw her face. I quickly read the little description Quest provides and knew we were looking at something life long. I remember feeling so devastated. Sad that my girl would have to deal with something her whole life.  Immediate grief. Immediate tears while still trying to spin it positively in front of an 8 year old who was listening to every word and reading all the faces in the room.  How silly of me. The grief!  Of course we would prefer to never have Crohn's but then that would mean no Camp Oasis and I am pretty sure Harper wouldn't trade Camp Oasis for anything even if it meant not having Crohn's and eating Honey nut Cheerios.

Camp Oasis is Harper's magical place. Have you ever had one of those? For me it was Cedarkirk. For Harps, it is Camp Oasis.  Camp is put on by the Crohn's and Colitis Foundation hosted at Camp Twin Lakes in Winder, GA.  Four years ago, it was her first sleep away camp. She barely hugged me goodbye as she ran off with her group. I waited til 2:00AM every night waiting for the email of daily photos, and I would scour them looking for even a glimpse of the side of her face. Again silly me to worry. She LOVED it.  Since the day she left camp 2023, she has looked forward to it every single year. She packs weeks before we are even set to leave. She has a group text of other kiddos from the camp and they start texting as camp gets closer.  She loves everything about it. But if you ask her what her favorite is, she will say the people.  If that isn't a reflection of her mom and dad I don't know what you would call it.

This year, as I waited in the long line with my ID at pick up, I couldn't wait to see my girl.  The woman checking my ID says, "Wait! You're Harper's mom?!"  Then she went on to tell me how much she enjoyed Harper. How Harper cracks her up and that she was such a trip. Her dad would've loved to hear that!  As I went to the nurse to pick up her cooler of food, the nurse stops me and says, "I have to tell you about your girl." Then she went on to explain how amazingly loving and kind an empathetic Harper was. Explaining that another camper was trying SCD but didn't have enough food packed and how Harper problem solved, shared her meals, and was genuinely concerned for her friend. She went on to say that she made sure all the staff knew and wishes she could reward her in some way. As you can imagine, that makes me beam. There is nothing I want more than to raise a kind

and caring kid. She comes by it naturally.  As I sat and listened to the chants, listened to them cheer as different pictures pop up in the slideshow, I couldn't help but think that they cheered a little extra loud when Harper's face came up. As I got a little choked up, I looked around the room and thought how amazing it is that all these kids and many of the counselors have Crohn's and colitis and get to come together and just be the same. To make memories. To experience magic. To look up to leaders. To experience joy. 

Tonight Harper is so sad. Not because she has Crohn's but because she is not at camp. My heart could not be happier. I have my girl back and she comes back changed. More connected. More proud. Fuller heart. Stinkier shoes. And more magic added to her favorite place on earth. So thank you Crohn's for changing my girls life.

Entry 97: Nine Years

Let's start by saying life is really really good. We are blessed beyond measure and there is too much happiness to even quantify. 

However, nine years! It's wild that it has been that long. Grief evolves and changes as the years pass. I don't think of Brian any less but it is different. We still talk about him all the time. All the little things remind me of him. But big, nonstop crying grief doesn't hit as often. Well except for this past Monday.  I wrote this when I was sad. Lots of grief. So be warned as you read!

To Brian:

What I miss:

• 
  I miss the way your mind worked. And how you could be the most insulting person ever but instead
  of hurt feelings you somehow left everyone feeling loved or noticed.
• The pure ridiculousness of you that could never be predicted because whose mind works like that?!?
• I miss hearing your voice. When I hear it on an old video I am blown away and it touches some place deep in my heart.
• I miss talking to you about FSDB. I'd love to know your take on so many thing!
• I miss your absolute obsession with Harper. You loved being her dad. So sad that you both miss out on each other. You'd be fighting all these middle school girls! And boys! 
• I miss you filling me in on all the details of everyone's life. Not having a guy in the group chat means missing out on important life updates of our people.
• I miss football Sundays. Football season always makes me miss you a little extra. 

What I want him to know:

• 
  We are so well loved. Beyond what you could've ever wanted and hoped for your girls. More than we even talked about in bed those final months. We are so well taken care of. You'd be so happy.
• Your people still show up for us in all the big ways and small ways. Just like they promised.
• Your girl is so amazing! Loves math, can sing like you and loves to be the teachers' favorite. She loves gymnastics. I can only imagine what you would yell at the competitions right before she vaults! You'd be in so much trouble. 
  
  
• We have a 12 year old! That's mind blowing too. Almost as mind blowing as the fact that you've been gone for nine years.
• She loves music. She may not know all the background and history of the lyrics, but she is really into it. You'd love it.
• Your family is still our family. We love the legacy and inheritance you have left for us that we get to do life with these people we love. 
• Our last together puppy crossed over the rainbow bridge. I hope you already know that because you are snuggling her and this is not news to you. 
• Your girl is ROCKING her Crohn's diagnosis. She is thriving and following SCD. The doctor wants her to grow a little more before puberty but I wish I could show them a picture of you, Gumby, so they will leave us alone!

Entry 96: Eight Years

 It is unimaginable that it has been eight years. As Harper and I were scrolling back through Instagram to find a baby picture for her teachers, I don’t only miss Brian, but I miss Harper even though she’s still alive and with me. I miss her as a baby. I miss her as a little who couldn’t say her Rs. I miss Brian as an adoring dad. I hate that I have to scroll so far to find a memory of all three of us together to share with Harper. I hate that there aren’t more of them to make together. I miss the one person who would enjoy her as much as I do. I miss them both and eight years feels like forever.

January my brain floods with Brian. Whether it’s the anticipation to Harper’s birthday that also paralleled with the anticipation of the end of the cancer/Hospice journey or some crazy way your body internalizes the heavy times, I don’t know. But I notice more things that remind me of him. Harper was picking pink paint for the walls of her room makeover. She picked a color and later realized it was called “elephant pink”. Brian has painted elephants on Harper’s pink nursery walls and she made the connection. Or Harper’s teacher emailed me and said, “She cracks me up all the time!” Brian would be so proud of the humor and I can’t help but to think that she got it from him. Or his friends gifting us their annual donation to Harper’s college fund at the end of their fantasy football season and thinking how damn special it is that they still take care of his girls and fulfill their promises even eight years later.or driving in the car and hearing our first dance song which he picked because duh, he loved music. But honestly the song isn’t that pretty, or easy to listen to, and doesn’t normally make me want to listen to the whole thing yet I really pay attention to the lyrics this time. 

I want somebody to share 

Share the rest of my life 

Share my innermost thoughts 

Know my intimate details 

Someone who’ll stand by my side 

And give me support 

And in return 

She’ll get my support

We had that! I got Brian and his support for the rest of his life. And how can I not be grateful that it was us and he was mine! The song goes on to say,

I want somebody who cares 

For me passionately 

With every thought and every breath 

We also had that! And for that I am lucky! 

Being flooded with memories and emotions is such a good way to remember him. What I wouldn’t give to ride around with him and for him to pause the song and tell me the meaning of the lyrics and all of the background story. I’d love to see what random prize he’d bring home for Harper from a work trip. I’d love to discuss the daily happenings at FSDB and get his take. I’d love to still know the details of his best friends’ lives because of their ongoing group text. I’d love to watch a Redskins game (because let’s be real he’d refuse to call them the Commanders) and have him lose his mind over all the last minute Jayden Daniels wins. I’d love for him to hack my Facebook and post something ridiculous yet have people still believing it was me who had posted. I’d love to see him harass Harper’s friends at her birthday party or be her biggest cheerleader at her gymnastics meet.

What the eight years have taught me though is to live. And gosh if my life isn’t pretty damn fantastic right now. Cherish those friendships because you never know when the last funny text or real hug comes. Do the adventures. Feel the feelings. And love super duper big. Also say the words. I’m so thankful that I screenshotted every text and post from eight years ago. Reading the amazing word and kind things people said about Brian and our family still touches me deeply. Those words still mean so much eight years later. Don’t hold back. Love you all.

Happy 11th birthday, Harper Newton, my best gift and his best legacy! 

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.