This is not going to be a “happily ever after” post, because this is a reality of our lives. Most of the time, I am able to easily see the good. Most of the time I don’t pay attention to the” hard” things that we have to deal with, because to us, it’s really not that big of a deal. The positive nearly ALWAYS outweighs the negative. But that is not always the whole picture. Often we don’t speak of these things because it is a deep vulnerability that cuts and bites to the core. It is a stark look at reality and mortality. That doesn’t mean I walk around with a cloud of doom and gloom, but sometimes, somethings hit hard. This is a snap shot of those heart-rending moments.

Something that is fairly difficult for me to explain or talk much about is how the month of July is really hard for me to get through. I love summer, July is my birthday month and it was always a great time of year growing up. The last few years though have brought a different perspective to my life.

July 16, 2014 is when my baby was born. I wasn’t able to hold Kadlin till she was cleaned up and stabilized. Which I’m not complaining about, kinda. We don’t know if those few minutes would have made a difference or not, better safe than sorry! But, I wasn’t the first one to hold her. I didn’t get to hold her more than a minute or two before they took her again. I couldn’t hold her again for another few hours while she was being taken care of and tested, ultrasounds, CT scan, IVs, had a mask attached to her face so she could breathe ( C-Pap). Even when I held her I had to ask permission. She was soooo tiny. She was locked away and I wasn’t allowed to feed her or change her diaper. I couldn’t hold her hand or touch her at all. I didn’t have her in our hospital room together. The day I discharged from Utah Valley Hospital was the day Kadlin transferred to Primary Children’s. This was the start of a long, for us, stay in the NICU.

Through the rest of July we didn’t really know what was going on or if she’d ever live outside of the hospital. This continued for a while, but eventually we realized she wasn’t going to die right away and we could start really planning for her to come home with us.

We went home in October and stayed out for a few months. The end of May 2015 started a rash of short inpatient trips. We made it through her birthday at home. Not many days later she coughed and gagged and turned blue on me. I suctioned her as fast as I could and we rushed to our hospital. We were then sent to be inpatient in the PICU at Primary’s. She was just getting worse and worse. She was so sick. She had one on one nursing. The nurse couldn’t leave the room, including going to the bathroom, unless they had a replacement to stand by and watch.

July 23rd we were told it would not be a surprise if she died. It was said much kinder, but that is all it boiled down to. I have never been more heartbroken. I was devastated. There are no words adequate to describe the loss. She was able to pull out of it, but not without A LOT more work and time. Eventually we went home. Just to be sent back 36 hours later. We figured out that she was having feeding issues and that’s what caused the illness that nearly took her. We got it worked out and went home again.

There were more in and outs on the inpatient side. Beginning of March 2016, surprise surprise, Kadlin got crazy sick again. She lost her drive to breathe on her own during that illness. April we got her trach. We discharged.

And then not even a full day later we were life flighted to Primary’s. It was at that point Kadlin became a hospice patient. That July, again there’s that July, Kadlin did a new trick of bleeding from her stomach. AND… Back to Primary’s we went.

It was a pretty close debate whether this was the time to just let her go. Because it wasn’t respiratory, we decided that we would go and see where it lead us. Thankfully, it lead to just a few days and we went home.

Last year, 2017, was AMAZING!! I don’t think we had any serious hospitalizations. Summer was an adventure time! Kadlin had her cochlear implant surgery, but that was the biggest thing.

Now, this July we are fighting with an issue on her poor little thumb. I spoke with one of her Drs at Primary’s yesterday and it was pretty close call to hospitalize and get IV antibiotics. And its still on the table. We have been on the fence a bit today about me just going up and getting her checked in.

So, all of these situations have made July a bit of a roller coaster ride. For those who don’t know me, I HATE roller coasters. They don’t FEEL safe (statistically they are much safer than driving, so I’m told), I get physically ill. The feelings I get when I see the memories pop up in my Facebook are pretty similar. I’m not ignoring all the wonderful things in my life. I’m not passing over the good.

But I get caught in a tight snarl of emotions where I have to force myself to breathe and focus on the fact that my girl is STILL HERE. I may or may not fight the tears that come with these memories. I physically feel knotted up inside. My body REMEMBERS how it feels to be in the ICU holding Kadlin’s hand. Knowing that I might not see her awake ever again.

This is what I remember when I think of July. It’s not a fun summer month. It’s the month that has been one to barely survive.

After the moment passes I go to Kadlin and see her as she is now. Mostly health, mostly well, mostly happy. If she agrees to it, I hold her. I cling to her life as it is now, vibrant and colorful.

I am trying to “combat” the difficulties of the last few years by filling our days with fun. We have gone hiking, mini golfing, playing outside almost every day. Taking Kadlin out and making her life more than something defined by how long her hospital stay was “this time”. She goes on the swings, down the slide, up and down ramps in her chair, walks, movies, dying our hair together. Just truly attempting to fill our days with as much fun and life as we can. I can’t drown the memories, but I can gently help them to the past where they will always be a part of me, but not moments that I use to define my life.