I recently realized that I haven’t updated my blog on Avery for the last 9 months or so…oops. As you can see by the title of this blog, we have been a little busy. The last update was at the beginning of December when we were trying to figure out why she was vomiting… Continue reading Surgeries, seizures, and strokes…seriously, I wish this was a joke!

Collateral Damage With any hard-fought war, there is pain and suffering and destruction unintentionally inflicted upon the areas surrounding, but not directly on the battlefield. “Collateral damage,” they call it. There has been so much in the way of collateral damage when it comes to Avery’s health journey, but what I’m referring to isn’t so… Continue reading Collateral Damage

Coming to terms with, learning to live with, and becoming resigned to. These are all ways to describe the word acceptance. Reading the title of this blog, I am sure that many of you were expecting to read about how I have finally made peace with the reality of our situation. I haven’t. And I… Continue reading Acceptance

It was still there. It was all still just how we had left it two weeks earlier. Red solo cups, a bottle of vodka, some plates and napkins, and, of course, the spot on the carpet. The relief I felt getting out of the hospital and finally being, as I call it, “home sweet home,”… Continue reading The Spot on the Carpet

I have been filled with an unfamiliar feeling these days and only recently did I understand where that feeling comes from, or better yet, what that feeling is made of. Tears. I am filled inside with the tears that I haven’t yet had time to cry. I have this heavy sensation deep inside my chest… Continue reading No Time To Cry

  This Friday Avery will participate in her schools annual PTO fundraiser which is a “Fun Run” where the kids raise money based on the number of laps they can run around the school gym. It may seem odd to invest so much thought into a fundraising run, but I have both dreaded and looked… Continue reading Fun Run

**This is a very long and detailed account of the major events of Avery’s surgery and post-operative complications. I can’t even begin to get into the emotions of the past 7 weeks because we are still here in the middle of it, and if I let that wall down, I won’t be able to get… Continue reading 32 days and counting…

My daughter is going to start pooping in a bag. There, I said it. I still don't want to believe it, but if I say it enough maybe I will get my head around it. I need to. And fast. Tomorrow, Avery is scheduled for surgery to create an ileostomy. An ile-what?? Ileostomy. That's right,… Continue reading Shit Happens

I'm throwing myself a party. A pity party. There will be plenty of whine. Instead of streamers and balloons, I am going to decorate with all of the most heart-breaking photos that depict Avery's pain and remind me of all that she has been through. I need to do this. While it most definitely seems… Continue reading Pity Party

This face. Her beautiful, light-hearted, smiling face. This is the girl I'm searching for. This is the girl that I have slowly lost over years and years of pain and medical interventions. Each blood draw and IV and NG-tube and injection and surgery and procedure and test and hospital stay she has gone through has… Continue reading The girl I’m “searching” for