Some days it feels like Casey has been gone for so long, and others it feels like it just happened. Time has really been messing with my head. We are still doing our best to keep ourselves busy and distracted from reality, but some days just suck. We get through them and do our best to make our baby girl proud.

Friday was 3 months. It was a hard and a good day at the same time. Tim found himself face-to-face with one of the suction machines and couldn’t help but push the button to see if the battery was still charged. I’m glad of glad it wasn’t. I think that sound may have been more than I could have handled. When he pointed out that the batteries no longer held a charge we realized it was the 10th and both of us were hit with the 3 month reminder as we stood there staring at each other and the machines.

We had a special event to attend over lunch for Casey, so that helped a lot. Casey’s girl scout troop was at camp all last week. There were lots of other troops there as well- about 150 kids total. The camp does a service project each year and this year they chose Casey’s Circle. Since we do the holiday party and Santa gives all the kids books, the scouts all made special book marks. They were all so sweet and we loved each and every one of them. The last day of camp was Friday and Tim and I were invited to pick-up the bookmarks as part of their closing ceremonies. All of the scouts knew about Casey and put their hearts into their project. It was really special for us. We explained to the group that Casey loved reading, arts and crafts & being a scout. It was pretty cool that they were able to combine 3 of her favorite things into that one project.

The campers and staff all wore camp tshirts all week. On the last day all of the kids signed each others shirts. One little girl in Casey’s troop reminded her mom, the troop leader, that they needed 9 shirts not 8. Casey was going to camp with them. She told her mom Casey would be up in the clouds watching over them all week. They got a shirt for Casey and everyone signed it for her. We brought it home and hung it up in her closet. She got a camp badge too. I still need to put her cookie badges her vest too. One day I will be able to do it. Right now the badges are just waiting for me in her girl scout box.

Casey’s friend Giuli passed on July 10th, almost 3 years ago now. Giuli would have turned 9 earlier this month. Giuli’s brother and sister also have June birthdays so their parents did a big party for all 3 kids this weekend. Before everyone went home they had a special balloon release for Giuli and her mom mentioned that she and Casey were up in heaven celebrating together. I hate that they are going through so much pain as well. Yet, I am thankful to have them as such close friends though. They understand what we are going through and have helped us a lot. It brings me a lot of peace to know Casey is not alone up there. Next month the 10th is going to be hard. It will be 3 years since Giuli passed and 4 months for Casey.

A lot of people ask if it gets better over time, or if things are slowly getting easier. No, not really. There are good days and bad, but I may have a week where I feel like I am doing okay and then out of no where I am just overcome with emotions. There will never be a day that I am not missing Casey. Some days I will be better at hiding my pain, or staying busy so I am not focused on it, but it will never be the same. I am a better person because of Casey. After losing her I am still that better person, just missing a piece. I will never be whole, and I have to learn to live with that.

There is a group here in town called sMiles 4 Sammy. They are the group we have partnered with the past couple of years to host the special angel ornament event and they do a lot for families like ours. Their annual fundraiser was last weekend. They had an auction on Friday night at their high school’s football scrimmage. Then on Saturday they had a 5K. The weather turned out perfect; we were a little worried it may get rained out.

The founder of the organization reached out to us, as well as the other families they helped over the year, and we were special guests at the 5K. They had an area where they had framed pictures and stories for all of kids that they serve, and a special list to honor those that have passed.

We had just gotten our t shirts made for Casey’s Circle. We and some of our friends (and Casey’s friends) decided to wear our shirts to the race as ‘Team Casey”. When we first got there I knew Casey’s picture and story were going to be hanging. I had to take a few deep breaths and prepare myself. I was worried I was going to get a little emotional, but I kept it together. The tribute to all of the kids was beautiful and I was honored that they included Casey.

Mornings are still really hard for me, there isn’t a moment Casey is not on my mind. It’s nice to have special things to do to honor her and to keep her memory and spirit alive. We are looking forward to doing the 5K again next year.

On Thursday of last year I shared Casey’s story as part of a webinar series for Neotech. This was only my second time telling her story with an ending. I ended up going over on time and had to rush the end a little, but it kind of helped. I was rushing and didn’t get a chance to get to worked up. The first time I told it I had all the time I wanted/needed and the last 6 months were hard to share. I will keep telling her story to anyone that will listen. She taught us all so much and touched so many lives. There are still countless lessons to be learned from Casey.

If you want to see the webinar, it is free to watch and will be online through June. If you need a CEU credit, there is an option to get one after watching as well.

We are working hard on setting up some events for Casey’s Circle. We did get our nonprofit status, so that is pretty exciting. Be sure to check out the new site if you have not already. It will be were we host tools, resources, and general special needs content as well as events and future CEUs. We will continue to use CaseyBarnes.org as our personal blog to share her memory and our lives.

We have been talking about it for years, but we have finally made some real progress in setting up a nonprofit in Casey’s name. We rolled out the new logo and website yesterday and we are well into the process of filing the official nonprofit paperwork.

All of the tools that we have built over the years have been updated and put on the new website. In addition the new site will also have all of the details for events we hosts, local resources, and of course our general special needs blog.

CaseyBarnes.org is not going anywhere. We plan to continue to use this site as our personal page. We will continue to share pictures and videos of Casey here, we will share updates on our personal lives as we grieve and honor the life of Casey. We’ll still have our guestbook so you can say hello at anytime as well. If you are looking for the tools and the non-Casey specific features that used to be here, please check Casey’s Circle.

Over the past ten years I have told Casey’s story more times than I could possibly count. Depending on the audience and time I have to share I may focus on different points of her story, but regardless I always ended the same way “No one knows what the future holds for Casey. Only time will tell.”

Sometimes I speak to large audiences, some small, some public and some even here in our home. I have always liked to share Casey’s story. I feel that by sharing her story, we can help teach caregivers how to best care for complex children like her. I also feel that by sharing we can connect with other parents and offer some hope or just let them know they are not alone.

One specialty that played a HUGE role in Casey’s life, and helped us to provide a good quality of life for her is often seen in a negative light. Ever since we learned how much Palliative Care helps families and children like Casey we have worked very hard to try and help eliminate that stigma any chance we get. Before, people heard palliative and immediately thought, hospice, death and dying, and it was a last resort specialty. That’s no longer the case. Palliative is not about death, they are about life. This specialty exists to improve the quality of life for complex patients. Yes, they also play a big role in hospice, but we were with palliative for the last 7 years of Casey’s life (that’s MOST of her life). Hospice was less than 24 hours.

Anyhow, about a month before Casey passed I was asked to speak to a group of nursing students about palliative’s role in Casey’s life. I agreed and confirmed the presentation for 4/28/16. A few weeks ago they reached out to remind me and provide some additional details on where and exact times. I had forgotten I agreed to do this at first, and then I felt very torn. This is a topic we feel very strong about and we see Casey’s life as a great example of the effects of palliative. It has only been a little over a month though, and we just celebrated her first birthday in heaven. I wasn’t sure if I was up for it.

I explained my situation to the organizer, and decided I DID still want to share. Some of my friends told me it was a bad idea, and tried to talk me out of it. I nearly cancelled many times. I talked to Tim about it, and if it was any other topic I would have cancelled, but it was a small group and a story we feel that needs to be told. I made my way to UT School of Nursing yesterday afternoon with determination and trepidation.

I’m not sure how I was able to keep it together, Casey probably helped with that, but somehow I got through it. I told the students before hand that I have told this story countless times, but that this is the first time I am telling the story with an ending. I did get a little emotional, and had to work really hard to stay focused, but I did it. Telling the story with an ending is very different. Everything felt so final and real. No matter how Casey was doing (good or bad) in the past, the story always ended with hope.

Casey’s story does have an ending now and that is something I will have to adjust to. The ending does still offer hope though. Through the help of palliative we had nearly 10 years with Casey- 10 wonderful years & a lifetime of memories we now cherish. With the added help of hospice at the end, Casey’s death was beautiful and peaceful in so many ways. It was intimate with just the 3 of us together. We got to say goodbye. Casey was able to tell us it was time, and everything was done her way. There were no sirens, no hospitals, just love. We have used her life as a positive example for so many years (and we will continue doing so), but her death can now serve as an example as well.

I miss her so much, but I am so proud of her. The work she inspired during her short time here on earth will continue in her name. She continues to touch and improve lives everyday. She was the most amazing person I was ever lucky enough to know. Keep up the good work, Pumpkin, we love you so much!

Thank you so much to everyone that helped us make Casey’s first birthday in heaven extra special. We were so touched by all of the people that participated and sent us pictures and videos. We know some of you participated, but were not able to get pictures, and we appreciate all of you as well.

Casey and Tim used to play guitar in the evenings while I cooked dinner. They usually used an app called Yousician and Casey LOVED one song created by this app call ‘My Kinda Party’. Tim reached out and they were so generous to let us use that song as the background for her birthday montage. Here is the final cut, enjoy…

We are not sure who sent us the 2 elephant balloons; there was not a note. We included them in our release and we are sure Casey loved them. Thank you. Also, some of the photos and videos sent did not make it onto the montage. You can see the full albums and playlists below.

Complete Photo Album

Original/Full Video Playlist:

I wasn’t sure if I was going to be able to make it through the day yesterday. It was Casey’s 10th birthday and her first birthday in heaven. Casey always loved her birthday and balloons. We couldn’t celebrate her birthday without including balloons. I would plan her parties for months and look forward to her excited little face as she got ready to see her friends. This year we had planned a sock hop. I hope she got to do lots of dancing yesterday, free of all of the limitations her body had here on this earth. I hope Elvis came and sang to her (she was a huge fan).

My heart was so full with each new picture or video that I saw of someone sending Casey birthday wishes. While it filled my heart, I couldn’t help but cry with most of them as well. I know she is happy, but these are the types of things I would sit next to her on the sofa and show her on her iPad. I’m sure she saw them all and had a full day collecting all of the balloons that came her way. It was just really hard not having her here to celebrate with us.

Someone sent us 2 elephant balloons to include in our release. There was no note so we are not sure who to thank, but they were so cute. Thank you to whom ever sent them. I am sure she loved them.

Some of Casey’s friends (and our friends- their parents) came over to do the balloon release with us in the backyard (Casey’s favorite place). I am so glad that they came to join us. Having the kids laughing and swimming and enjoying the beautiful day was a perfect distraction for us. It really was a perfect day, one Casey would have loved.

We are still receiving more pictures and videos. We’ll wait a few more days to be sure we have them all before putting a montage together. You can see a lot that were shared on Casey’s Facebook Page. We’ll share the final/complete montage here in the next few days.

Thank you so much to everyone that participated. It means a lot to me to see how many people love and were thinking of our baby girl. We were so lucky to be her parents for nearly 10 years. I can’t begin to tell you all how proud we are of her and the lives she touched.

I use the motto ‘Do it for her…” quite a bit. I actually stole it from my all time favorite Simpsons episode “And Maggie Makes Three”. I adopted as my motto since everything I do I do for Casey. I have been talking about wanting to do a tribute tattoo for Casey for years. I told Tim that I was going to give it to myself for my 40th birthday.

I always expected Casey to be there when I turned 40 and to come home and show her the tattoo in her honor. After she passed I decided I didn’t want to wait for 40 anymore, I wanted to go ahead and get it done.

I saw a girl with a tattoo that I really liked and she sent me to her guy that I felt totally heard me and understood what I was looking for. I am NO artists, so I really relied on him to come up with the actual image.

Yesterday I took a friend with and we spent a few hours at the tattoo parlor. I did it all for her, and I think it she would love it.

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.