Thursday, September 22, 2022

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!

Tuesday, September 13, 2022

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.