A Beautifully Broken Life.

04/27/2026

Waiting to get put under for her MRI today at Children’s hospital.

03/06/2026

First week back after three weeks off school. Has been a little rough going back. Today she shared how she felt about being at school on her device.

03/03/2026

Princess decided she wanted to snuggle in the couch after school instead of watching tv in bed.

I tell her I love her more than life it self
She tells me NO
I tell her she can’t tell me I don’t love her. I love her the most. She starts laughing at me.

02/17/2026

So hospital stays are boring. Ella sleeps or watches tv so there is a LOT of down time for me.
In the last week i have :
Read several books
Watched a million fb reels
Planned my next several tattoos
Planned some matching tattoos with people
Ignored the financial part of tattoos
Started playing old schools words against friends
Played several other games on my phone
Sent a lot of memes to people

If you have spent a lot of time in the hospital what do you do?

02/16/2026

Life at the hospital is so much better with my own blanket. Why have I never done this before?!? You would think after 15 yrs I’d be better at this hospital stay stuff.

02/12/2026

I am somebody that runs hot. It’s winter and I will have the fan on. Sitting in the hospital room and I am freezing. Whoever designed the rooms decided to put a vent blowing cold air right above the couch I sit and sleep on then give you thin blankets. This is comforter weather in here. I need a beenie and some gloves. Maybe start a little fire over here in my corner. They tell me the temp is 72 degrees in the room but if I could get Amazon to deliver a temp gauge to my room I would just to prove it’s like 30 over on this side of the room.

02/12/2026

When admitted to the hospital i become addicted to MyChart. As soon as there is a new test result or message i am logged on. Today I got a message that I had new Education…….

Feeding tube education. They are about 14yrs behind. I think I have mastered the class at this point

01/25/2026

Or the very real reality of having to say goodbye one day.

01/14/2026

Today we did a video appt with the anesthesia clinic to discuss our 15th surgery at the end of the month. Just another this our life moment.

01/11/2026

Mama got away for the night to the beach and came back to a kiddo with 105 fever. She likes to get sick when I go away. Thank goodness she has somebody who loves her like her own and takes care of her. It’s nice to know my daughter is taken care of no matter what.

01/09/2026

01/04/2026

Those damn meds. I curse them every morning. We are down to only a few in the am yet I still hate doing them Its not hard so I don’t know why I hate it so much.