I don’t know how it has already been one month since my sweet girl earned her wings. I would give anything to know that she is happy and free now. We put a handful of videos on a YouTube Playlist recently with all kinds of things we found. One of the videos has Casey coloring pictures back when she was able to move her arms a little more. One of Casey’s friends would see Casey’s art hung on our walls every time she was here and asked me repeatedly “Did Casey really draw those?” or “How did Casey draw those?”. She didn’t know Casey when she was able to move her arms a little so the idea of Casey drawing was always hard for her to imagine. I sent her mom the video and asked her to show it to Casey’s friend. Later that night the mom called the girls in (including the little sister – also a friend of Casey’s and in her girl scout troop) and told them that she wanted to show them a video of Casey coloring. The little sister asked “Here, or in Heaven?” I wish so much I could see Casey in Heaven. I think the idea of a Heavenly YouTube channel sounds pretty great!
Tim went back to work last week (he works from home, so he isn’t leaving me alone at home- don’t worry). He is slowly getting back into the swing of things there. He did already miss one early morning meeting. I used to be up by 6 everyday to go talk to the night nurse and take over Casey’s care so they could get home. Early morning meetings were never an issue since I was up already. We’ll figure out our new routine eventually, it’s still going to take some time through.
Tim and I are very different in many ways. When I am sad, sick, etc all I want to do is sleep or hide from the world in my bed. Tim is opposite, he wants to walk, run, ride his bike, etc. The only part we seem to share is the hiding from the world on bad days part. It’s good though, he is getting me up and I need that, and I am slowing him down and he needs that. We seem to have found a median that is keeping us both productive, but also not letting us overdo things.
The house is so quiet- too quiet. Tim has started to leave on the TV or radio to try and fill some of the void, but it’s so weird. We have listened to the constant suctioning, the breathing of the concentrator, Casey’s iPad playing one of her many shows or movies, and the nurses stirring about for YEARS! Granted, the concentrator just for the past 6-9 months, but the rest was our background sound for years. We still expect to walk into the living room to find Casey watching ponies and giving her nurses a hard time. Each time we walk in and she’s not there is very painful. I have watched all of the videos we found over and over again to hear her sounds and her voice. It’s not the same though.
We are doing our best to keep busy. We officially filed our paperwork for Casey’s nonprofit last week. The initial phase went well and now it goes to the comptroller who will assign & send out a taxid for Texas. We really hope this can happen before Casey’s birthday this year. After we get all of the state stuff done we will start to tackle the federal paperwork. That’s a lot more work.
A lot of people have told me that they will be participating in the balloon launch for Casey on her birthday. I think Casey will love getting all of the balloons sent her way. She always loved balloons. If you participate, be sure to send us videos and/or pictures. You can email them to us at info@caseybarnes.org or you can post them on her facebook page. We will collect them all and compile them for a birthday montage for Casey.
Thank you to everyone that has been sending cards and/or flowers, checking in on us, bringing us food, making donations in Casey’s name, and everything else. We really do appreciate all of the support, kind words, positive thoughts and prayers. We have appreciated everyone’s support over the past 10 years, but especially during this very difficult time.
Other than keeping busy focusing on Casey’s nonprofit, there has been one other thing that has been helping me a lot. So many people have told me about ways Casey’s touched their lives, or something they recently saw/heard that made them think of her. Knowing that her memory and her impact live on in all of the lives she touched means a lot to me. I may cry when you tell me this, but it’s “Liquid Pride” as I learned from her favorite pony episode. Please continue to keep her in your hearts and thoughts. She was such an amazing little girl. I miss her so much and this 1 month date is harder than I expected (and I knew it was going to be rough).
I had a dream around the time of Casey’s service. It was very peaceful and beautiful. She was standing, glowing on a beach and she looked a lot like this drawing. Her long hair flowing in the breeze of the sea as she stood and just radiated. She didn’t speak, and her face still looked the same, but she was standing and had wings. I just wanted to share this drawing with you all.
I feel like I have rambled on a lot more than I intended. Really I just wanted to let everyone know we are still healing, but that we are making progress. Some days (like today) just suck! We are going to be okay though. We have to be, it’s all still for her.