Casey’s 11th Birthday

Casey’s 11th birthday is coming up in just a few weeks. Last year we were still in fog from losing her just before she turned 10. She LOVED her birthday! Every year we would go all out. She loved to see her friends and have a day all about her. We would usually have a party on a weekend near her birthday, and if her actual birthday was on a weekday we would take her to her favorite place for lunch. Casey loved going to Chili’s. We would get her some ice cream; she couldn’t eat food by mouth, but she could taste things on her tongue. She loved to read the colorful Chili’s menu. We have a lot of special birthday memories of her at Chili’s. One year she wasn’t up to going physically so Tim went to Chili’s and got take out. He told them how much Casey loved it there and that she just wasn’t feeling up to coming that year. They gave him a menu to take home so that she could still read it while she was resting. One year she and her nurse made their own Chili’s menu full of all the Casey flair we love so much. We still have both of these menus with Casey’s books.

Shortly after Casey passed away we created Casey’s Circle, a nonprofit, to serve as her legacy and to continue all of the work she inspired. To celebrate her 11th birthday we reached out to Chili’s. On Wednesday, April 19th, from open to close, Chili’s Round Rock will giving back to Casey’s Circle. You can dine-in or take-out at any time that day at the Round Rock location (2711 S Interstate 35, Round Rock, TX 78664). Be sure to tell them you are there for Casey’s Circle. You can download our flyer and hand it to them, or just mention that you are there for the Casey’s Circle Fundraiser. 10% of every purchase that mentions the fundraiser will be donated to Casey’s Circle. Help us celebrate Casey’s birthday this year at her favorite place. We hope to see you all there!

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GP’s First Anniversary

1 year ago today we lost my grandpa, Lin. He always signed his cards and preferred to be called GP. GP and Casey had a very special bond. They loved each other so much and would jump at the chance to spend time together. Casey loved to go visit his at the assisted living center down the road and when he would come over he would always want to sit right next to Casey. GP and my grandma were amazing grandparents for me. By the time I had Casey they were starting to have some health issues. I always wished that Casey could have known them the way that I did, but I know that she knew them in her own way.

I had taken GP to a doctor’s appointment, a routine appointment, just the day before. I knew he was having some issues breathing and hated to drag his oxygen with him, but over all he was doing pretty great for 92. When the nurse called that afternoon she didn’t want to say the words “your grandfather has passed away.” I could tell by the words that she did say that he was gone. I called for Tim to come sit with Casey and I got to GP’s minutes later.

His room was full of EMTs, fire, police, etc. I knew he would not want to be kept alive on machines so I begged them to stop and to let him have peace. I was there for a few hours answering questions, filling out paperwork, and doing everything that needed to be done. Tim stayed home with Casey and started to call the family.

I was not expecting GP to leave us when he did. I knew we didn’t have a lot of time left with him, but I was surprised when I got the call. I always knew when it was his time that he would go quick. I know he missed my grandma so much that his heart broke a little more each day. I hope that one day Tim and I will celebrate our 65th anniversary and still hold hands and love each other the way my grandparents did. I felt at peace knowing that the two were back together again. Surprised at how sudden it happened, but at peace that he went quick and that he was back with Grandma.

Exactly one month later Casey left us. It was during her final days that everything made sense. GP would do anything for her, and I think he went ahead to be there to wait for her. Losing my baby girl is something I will never recover from, but I know that G&G are taking good care of her. I am sure she and GP are causing all kinds of trouble. I miss them all so much. One day I will be able to join them, but until my time comes I know she is in good hands.

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Rants from a Woman About to Lose her S***

crazyI have had many moments in my adult life where I have had to step away and take a moment. It just amazes me though how clueless some people really are.

Let’s start 10 years ago. Tim and I were new parents and had a child with more medical issues that we had ever seen. We were learning how to use new equipment, all about the different types of specialists, diagnoses, treatments, etc. Every day was a struggle to keep our sweet little baby alive. Luckily social media was not what it is today- I really don’t think I could have tolerated social media at that time in my life. I would get so angry at friends and family that would complain about things I would have given anything to deal with. Maybe they were complaining that their child failed the driving test, or that little Johnny was almost 3 and they just can’t get him potty trained. Or maybe I would hear someone asking for prayers because they just could not get over a cold and they had a big meeting coming up at work. UGH!!!! Things things don’t matter! I would love to have a big work meeting coming up that I may miss due to a cold- but instead my concerns are over how to keep my child alive.

It took a while, but I eventually learned that people that do not have children with special needs have very different concerns than those of us that do. They don’t know what my life is like and their concerns were not intended to anger me. I eventually realized I was glad they did not know what my life was like. I don’t want other children to have to go through what mine is going through and if they were completely clueless to my concerns then maybe that was a good thing.

Around Casey’s second birthday I finally met other parents of children with special needs. This was a whole new world for me, I could talk about my fears and concerns and these other moms really understood what I meant. It was great, for a little while. Some of the moms have children with very complex needs and I felt like they did understand. However, there were other moms whose children had the label of special needs, but the child was very minimally impaired. I didn’t understand how a mom with ADHD could come into a group with moms like me and complain about her life. Again, her concerns sounded like a walk in the park and something I would have loved.

I took a step back and realized that in the special needs world things are very subjective. What may seem like the end of the world to one family is a breeze to another. However, we all have very similar emotion struggles. We all have a child dealing with something that we can’t simply fix. It’s not a broken bone that will heal, it’s not a cold that will be gone in a few days, we are all dealing with ongoing issues and we can’t fix it. I had to work really hard to appreciate that while their specific challenges (equipment, diagnosis, doctors, etc) may be very different they were hurting as a parent in a way very much like me.

Then came social media. I was so happy to see all of the different ways that the special needs community connected through social media. There were groups by location, diagnosis, general special needs, for school issues, for insurance, over time there has been a page or group for just about anything you can image. I would go to some of the diagnosis specific groups and get very angry. Casey’s diagnosis has varied effect. Some children or very complex and similar to Casey, but on the other end some children have very few issues at all and will be able to live very full and independent lives. When those families would complain I would lose my mind. Do they not know how lucky they are that their child is doing so well?! Then I would have friends (from the special needs community and from other areas of my life) in my news feed. Seeing people post happy celebrations was great. I am honestly happy for them. Seeing people complain about things that simple don’t matter was getting to me again, just like it had early on with Casey.

I had to learn to let things go, I left groups that I felt were causing me more anger than support. I removed some people from my news feed so that we were still friends, but I wouldn’t see their daily rants on topics that I felt were a waste of time and energy. After a while I was able to log on and not get angry.

Over the last year I have had to step back again many times. After we lost Casey in March I have had very little patience for people complaining about petty things. I want to scream at them and tell them that they have no idea what really matters in this world and that they need to be thankful for what they have. Quit complaining! Your family is healthy, you have a roof over your head and food on your table, life is good! Without fail though, people have no idea how silly they sound when they act as if the world is ending because someone messed up their order at McDonalds and the kids cried because they got fruit instead of fries with their happy meals. No, I will not boycott McDonalds with you over this, nor will I share your post and ask my friends to never go there. IT DOESN’T MATTER!

I had to learn to step away again and take a moment. I’m glad that these moms have children that can cry when they get the wrong order. I’m glad that these moms don’t know the pain that I carry with me every day. I wish that no parent ever had to lose their child. For that reason I am able to be happy that these people annoy me so much and make me want to scream at them. It’s still very hard to keep my composure though when I know what really matters in life and how fortunate these people really are.

I guess my perspective has changed a lot over the years. Casey has taught me to be thankful for everything and she has taught me what really matters in life. I like to think that if she had been healthy and my life had been different that maybe, just maybe, I wouldn’t be one of these clueless moms that drive me crazy. I hope that I would be one of the more compassionate and caring people.

If you have a friend or family member with a child that has special needs, or one that has lost a child. Try to keep that in mind. You don’t have to edit everything you say, but try to appreciate what you do have. We all have bad days, and we are all going to complain about things from time to time. Take a minute and realize what matters most to you. At the end of the day if what matters most is still there, it’s not that bad.

Preparing for the Holidays

angelOver the years we have shared posts that talk about some of the stress that came with the holidays. There were food centered holidays and we had to find ways to modify these so that Casey could participate. Then there was the issue of over stimulating Casey. When we would have a house full of family (and kids) it could get a lot louder than she was used to. She could usually handle this for a little while, but if it went on more than a few hours she would start to really struggle and her physical health was impacted. Usually over holidays Casey’s nurses would take time off. We always understood this; they all had families of their own. However, when they would take off that meant we had to stay up all night, or Tim would have to take off work, or a variety of other things that we would have to do to be able to still keep Casey’s care managed. Trying to manage all of Casey’s needs and then adding preparing family meals, getting the house ready for guests, etc. would often be stressful for all of us. However, we gladly added this stress because being able to bring the holidays to Casey in her home was the best way that she could be part of the celebrations. Our families and friends were always really good about understanding how doing things in her home made things easier for her (and for us).

This holiday season feels more stressful than any we have celebrated over the past. Casey loved Halloween and Christmas. The thought of celebrating these without her is very painful. A week before Halloween we went to a special needs Trunk or Treat and handed out goodies to other kids like Casey. We did this as part of the nonprofit we created to continue all of the work that Casey started. We had to kind of emotionally check out to get through this. We were there as a work event, but every fairy or wheelchair costume that we saw broke our hearts a little more. We were glad that we did it, but it was really hard. That wasn’t even on Halloween so when Halloween came around we felt completely lost. We opted to put a bowl of candy on the front porch with a sign to take one, then we went to dinner and killed as much time as we could before heading back home. Casey always loved handing out treats with us, or on days she was up for it, going trick or treating. On Halloween we always took treats to all of her doctors as well. We didn’t do that this year. We couldn’t. Part of us wanted to go see all of her doctors and to thank them again for all that they gave her and us over the years, but it was just too hard.

The palliative team is hosting a workshop/therapy group for families that have lost a child. We started last week and will go weekly through November. The focus of the group is to help us survive the holiday. There were other families in the group with us. Some of them have already been through multiply holidays and they still do not feel equipped or emotionally able to get through them. Hearing them talk about some of the things they have tried in years past made us feel a little less crazy, but knowing that they have been years in the trenches and still struggling makes our fears of the future even more real.

All Tim and I want to do is close and lock the doors and just be alone with Casey. We aren’t ready for big family celebrations. Before we had Casey we used to split the holidays. We would do Thanksgiving with one family and Christmas with the other. We tried to switch it back and forth each year traveling from Los Angeles to either Chicago or Austin. After Casey was born, travels stopped. Any celebration was done at home so that she could participate. The thought of traveling for a holiday and celebrating with family now makes me really sad. I feel like it is almost just going back to the way it was before and it almost negates her life all together. I know it doesn’t, but that’s how it feels. The thought of having the holidays at our home like we always did with her is too painful as well. How can we just do the same thing without her? I think eventually we will get there and we may be able to celebrate holidays in some capacity, but it’s going to take time. I have no idea how much time, but I know we need time to mourn and to heal in our own ways.

We know that the rest of our family is sad and misses her as well. We know that they want us to join them in the holidays. It’s different for us though. She was our entire world- our baby girl. It is just too painful.

With Thanksgiving and Christmas right around the corner Tim and I both find ourselves feeling a litmus of emotions. We are still devastated that our princess is not here each and every second of every day. We find ourselves picking up toys and clothes we see that make us think of her and want to put in her stocking or under the tree. Then we have to remind ourselves that she won’t be able to open her gifts this year. We find ourselves feeling guilty when we leave the house and don’t have to have a nurse and a backup in the ready for us to leave together. All the while we feel so fortunate that we were able to be her parents and that we had 10 amazing years with her. We feel proud of all that she was and all that she did. We go through all of these emotions a million times a day. With the holidays sneaking up on us the emotional roller coaster is only growing. I have no idea what we will find our selves doing over the holidays, regardless it’s going to be very difficult for us. Most likely I think we will use the time for quiet reflection and to continue to mourn and to heal. We’re not quite ready for big holiday celebrations just yet.

footstepsWe appreciate everyone inviting us to join them in holiday celebrations. We can’t do it this year, and it may be many years before we can, but we appreciate the invites. Please don’t take our declining as us not wanting to be there. We want to be able to celebrate with you all, we really do. Keep inviting us, and eventually we will accept. Please understand when we decline though, and please don’t pressure us to jump before we are ready.

Exactly one month before Casey passed away, we also lost my grandfather. He loved Casey so much and I know they are together now with my grandmother as well. That brings me some comfort. This is the first holiday without him as well. 2016 has been such a hard year (for so many people, not just us). I am ready for 2017. I wish I could just time warp ahead and skip over the holidays this year all together. We’re are doing the best that we can. We will find our way eventually.

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The Conversation

All of my life my mind has wondered. I think most of us do this at least some (maybe I do it more than others). When I am about to meet someone knew, go to a party, present to a group, etc I imagine the event and the dialog that goes with it. I will often imagine full conversations in my head, sometimes out loud (my husband has caught me talking to myself more times than I can count). When I was pregnant with Casey I imagined how conversations would go when I went into labor, telling our friends and family about our beautiful baby, I imagined much more than just conversations. While I was pregnant I imagined the rest of my life. All of the firsts: first word, first step, first day or school, first crush, etc.

It was clear right away that life as I had spent imaging it for those 36 weeks was not going to be anything like I had planned. It was hard to grieve the life that I had imagined, but I did. Eventually I embraced the live that I was given. I learned so much from Casey. She taught me what really matters in life, and about real true love. Every day that I was able to be her mother was gift, and I am so thankful for the nearly 10 years that I had with her.

It’s been over 6 months since Casey passed away. I have found that my mind still wonders, and I still imagine full conversations, but the dialog now is so different. I now imagine conversations that never crossed my mind before.

stock-vector-sad-smiley-emoticon-225052135There is the conversation with an old friend that I run into. I have not seen them since school and they have no idea about Casey and the shattered heart I now carry. When they ask “How have you been?” or “Do you have any kids now?” I imagine how I respond to that. Do I tell them about how I had the BEST kid and how lucky I was to be her mom? Do I tell them about the amazing things she did in her short life and the number of people she continues to inspire? Or, do I tell them about the challenges she faced (and often over came) and the emptiness I am left with in her absence? Or do I simply say, “I’m doing good. Yes, I have a daughter. How about you?” I don’t want pity, and I hate the “oh, I’m so sorry” face that comes with telling someone that your child passed away. I do want to tell the entire world about my kid, the BEST kid, and how amazing she was every single day. How do I tell her story, and not get “the face”?

superthumbI play out the conversation with strangers as well. How do I respond if a stranger asks if I have any kids? Do I say yes, do I say I did, do I say no, not anymore? How do I tell share Casey’s strength and story with the world, without becoming the saddest conversation that person has had all day? How do I get people to see her light, without seeing my darkness? I play the conversations out in my head, and no matter how many different ways I played it, I can’t seem to avoid “the face”. Time is never an issue in my imagination. In my imagination I am able to get the face and then recover by telling them all about how amazing she was and how she continues to inspire people every day.

I know I am still new at this. I hope that in time I am able to find the best way to share her story with the world and for them to see the amazing little girl she was- not just my broken heart. I’ll figure it out, and I am sure she is helping. If you see me and ask about her, please stick around and hear the whole story. I promise, it’s worth it.

Signs

I love getting signs from Casey. I don’t get them everyday, and sometimes I seem to get more than others, but I love the little messages she sends me to let me know she is okay. I always knew I would be here without her one day, and I did my best to make the most of the days we had while still preparing for our inevitable future. There were 2 things I always hoped for. First was that when she was ready and let me know, that I would not miss her signal or misinterpret it for selfish reasons. Second was that she would find a way to let me know she was okay and not suffering.

I asked Tim the other day if he gets little signs and he said not as often. I wish she could find a way to let him know she is okay too, but I am so thankful for the signs she sends me. A few days ago I was missing her a lot (that is every moment of every day really). One way I feel connected to her is to just float around in the pool. I was sitting in her chaise drying off after. She always loved to lay in the sun on those chairs. When I looked up into the sky there were perfect white fluffy clouds scattered across. Right in the middle, the clouds made a big “C”. I smiled and thought of her doing all of her arts & crafts and how much she loved her name and the letter “C”. Then I glanced back and the “C” had dissolved into a heart shaped cloud. I knew she did that; she knew I was missing her a lot right then. I see little things like this often and they help get me through the day.

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Some of Casey’s nurses, teachers and friends have told me they get little signs from Casey too. She is a busy girl up there. I treasure these signs. One of these days I will find a way to schedule a one-on-one appointment with the Long Island Medium and actually talk to Casey too.

Tim and I have been working hard to get Casey’s Circle going. We got our official non-profit status pretty quickly and have since been trying to lock in the events we want to do, some fundraising ideas, and ideas for online education to help kids like Casey as well. We have made some progress and it has been good to have a way to keep doing the work Casey started. It has been hard for me to get back into writing, but I am working on it and have some ideas.

We are working on confirming the dates for all of our holiday events now. Hopefully I will post a save-the-date with more details soon.

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Friendship Day

As everyone that knows Casey knows, she was a HUGE ‘My Little Pony Friendship is Magic’ fan (MLP). She may have even been the number 1 fan. MLP has a special event happening tomorrow, July 30th. It is Friendship day! There are a few things that MLP suggest people do to help celebrate. We LOVE this idea and think Casey would too. In order to help promote friendship and being good to one another we are offering a tshirt giveaway. MLP contacted us and threw in some MLP toys to go with the giveaway too! In order to enter share a picture of your child and his/her friend, or a picture doing one of the things MLP suggest in the image below. You can either post your pictures directly on Casey’s Circle Facebook Wall, or you can send us a picture by email – info@caseyscircle.org. Be sure to add #FrienditForward! Enter by 11:59PM 7/30 CST for a chance to win. Good luck, and happy Friendship Day!!!

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More details on the contest can be found on Casey’s Circle

3 Months

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.

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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.

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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.

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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.

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5K for Casey

IMG_2696There 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.

IMG_2697We 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.

Click here for Webinar

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.

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