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.