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!

Entry 88: Note to Brian

We take a break from Notes to Joan to bring you a note to Brian…

Dear Brian,

Our kid is the one the teachers love. She may not keep track or her belongings and she may draw on every paper she has, but she’s always the one doing what’s expected and the one that is seriously offended when the whole class gets a punishment since she knows she was being good. She’s the one who made her teacher laugh this week when she said, “You know what sounds good? A hot tub and a strawberry daiquiri.” She’s not wrong. 

The bad news is that like you, our baby is now on the medical roller coaster. Nothing life threatening but still not fun. As you can imagine as a mom all I want to do is make it better, let her have a normal life, and fight everyone who isn’t making that happen fast enough. I want you to be in the waiting rooms with me flirting with every worker so they treats us the most special. Making everyone laugh and making is not feel so heavy. Making everyone be our best friends whether they intended to or not. I miss you and wish you were her to do this week us.

Love always! 

P.S. Harps is struggling with some GI issues. She’ll have a scope Tuesday in hopes of getting more answers. Also she knows I wrote this and was okay with sharing. Just asked that you don’t tell any kids her age. 

Entry 87: Small World

 The best thing happened today! While sitting at Lily's lacrosse game, I talked to the mom sitting next to me. She seemed cool. Later in the game, she said, "You are SO familiar." I had had that same thought last week. Going through the normal questions like where do you work? Do you work out? What school do your kids go to? And we still couldn't figure it out. A few minutes later she said I worked at Community Hospice for 10 years. I said I am going to cry and then I am going to hug you. This mom sitting next to me today happened to be the most important person to me the 11 days Brian was at Hospice. She was the manager at that time. She was the one I cried to night one. The once I cussed to when feeling so overwhelmed. The one who made me feel normal when everything seemed so chaotic. The one who gave use the bonus "frat room" when we had so many visitors. The one my mom wrote a long letter to after everything happened. When you are in the chaos of all that occurs in Hospice, it is amazing to have someone there who knows the Hospice side of things. You abruptly leave when your time at Hospice is over. And although we did go back because Harper was asking questions, you don't get to tell the people how much they truly meant to you. Well, today I did. I got to look at this person in the face and tell her the impact she had on me all while we were trying to figure out the rules of lacrosse. I got to introduce her to Josh and Harper got to hear about her too. I love this small town and small world we live in. I am so thankful she said something out loud and that now I get to hang out with her on Sundays. My heart loves this so much!

Entry 86: Five Years

 What! How? It’s insane to think so much time and life has passed without Brian physically in it.

Grief looks different as the years go on. Memories of Brian and funny stories to tell about him still pop up very daily. The tears are more random and further apart but the missing is no less intense. My Timehop for the month of January is brutal and the picture from Hospice remind me of all the love but also show how cancer devastated Brian’s body.

It’s amazing to be loved by someone now who supports my grief and gets it.  When I randomly cry and Josh just hugs me and lets me feel my emotions. He gives comfort, listens to memories, and accepts it all. I wonder how I could so lucky to have both him and Brian. I am so loved. 

This morning, on the day I became a momma and the day I lost my love, I got to wake up in Colorado with our besties, the ones we inherited from Brian. We got here Thursday and I have almost peed my pants from laughter multiple times every day since. As Harper says, “I’m so happy to spend my birthday with our original family.” We get to talk about all our random memories from silly fights where I stormed out with a baby bag to ridiculous things Brian would do and say. They know him even better than me. They see Brian in Harper and love her so much.

I took a screenshot of every post that people posted after Brian died, and last night I read them through tears remembering just how many lives he touched. And as my life continues forward from that day in 2017, I realize I spend less time with the people who continue to mean so much to me. Who literally walked along side us every hard step of cancer. I love them so much and their continued support for us got us through.  I’m still so insanely thankful for them all. It would be easy to be sad today I am so so so thankful that I had Brian. And because of Brian my life is so blessed. And because of our love, I get to celebrate our baby turning eight! He would love everything about her. The fact that she has a favorite bad word, the fact that she nailed people with snowballs unexpectedly this weekend and laughed like a crazo about it, the fact that she gets awarded academic excellence for facing challenges well, that fact that she makes crazy faces and says the most ridiculous things, the fact that she’s very much a people person and loves so easily, and the fact that my new man loves her so well. 

So instead of being super sad all day, we are going to spend this day making more memories, having ridiculous fun, celebrating our eight year old, and hugging the people we love.