In the medically complex community losing our babies is too often a reality. I meet a lot of parents that have lost their child and I hate that this really screwed up club continues to grow. It’s nice that we all support each other, but I really wish none of us had to go through this type of loss.

In all the different books, and groups there is a common message. There is no right or wrong way to grieve. That is so true. All of go through our own process and in our own time. So what does grief look like? I think it looks like life. All of us still have a lot of our own life to live and we have to find ways to carry our pain but get up and keep going. We have to find ways to appreciate life again and to find joy again. It’s beyond difficult to find joy. When we catch ourselves smiling, laughing or just feeling happy we then are overcome with a wave of guilt for feeling like this without our baby. It’s a really messed up emotional struggle we all go through.

I want to say this, and want to say it loud enough for all the grieving parents to hear- You are allowed to be happy again! Finding joy, being happy, and living your life to the fullest is not an insult to the child you lost. It’s the opposite actually. You have to do these things- for your child. You have to have the experiences they didn’t get; you have to love and laugh and live fully FOR them. Your child’s life and their memory is not served by sitting at home feeling sorry for yourself. You are allowed a pity party as often as you need one, but don’t beat yourself up for finding joy.

For those that don’t already know, I do a lot of public speaking where I share Casey’s story. I talk with nursing students, med students, and on occasion I even talk to primary schools. I use the good and bad lessons from Casey’s life to help mold future providers and to prepare them to be the best nurse or doctor that they can be. I always told her story during her life, and while she is no longer in my arms every day, she can still be an amazing teacher and source of inspiration for others.

One of the things I find myself saying a lot is that time is no longer my friend. I think to really understand what I mean by this you have to have lost a child or someone very close to you. It’s really weird. Sometimes it feels like ages have passed and it’s only been days while other times it feels like only a moment has passed and it has been years. The concept of time when such a huge part of you is missing just doesn’t work anymore.

After Casey passed I could not bring myself to drive the accessible van anymore. Tim and I had to find another vehicle. Driving her car without her was too much for me. We bought a really basic little car that I have been driving since. Every time I notice the odometer however I feel crushed. Each mile is one more mile away from Casey. We just passed the 3rd anniversary of her passing in March and I just passed 30K miles on the car. Each of those milestones makes my stomach ache.

I have found myself coming to this website to post updates many times as well, and often can’t bring myself to publish the post. It’s one more update on life without her. Yes, I know, it’s life without her physically and that I am never without her, but I’m sure you all know what I mean.

A lot of things are happening in my life right now, and as great as these things are all I want to do is share them with her. She is my reason for everything. I would give anything to hold her and kiss those perfect little cheeks just one more time.

Yesterday was a really nice day, it’s been a while since I turned off my school/work mode and just enjoyed a day. The weather was perfect, and everything was exactly what I needed.

We started off the day by heading to a park nearby that Casey always loved. It’s called the Play for All Park and it is a park that is fully adapted so that kids of ALL abilities and ALL ages can play together. There was a wheelchair swing there that Casey could hang out on all day. Her last birthday party was at this park as well. Shortly after Casey passed away we saw that they were doing a major expansion on this park. We decided to donate to the expansion and part of the donation included a special bench placed in Casey’s favorite area just for her. The grand re-opening of the park was yesterday and we finally got to see her bench. It came out better than we could have ever imagined. The Round Rock Parks do a lot for the special needs community and we love being part of this community.

We told our families about the bench and my mom and step-father were able to come to town to attend the event with us. We had no idea we were going to be part of the event. They actually had a special presentation where all of the donors were given framed photos of the park. The news was there and about half of Round Rock. Some of our friends came along as well. It was a great way to start the day.

You can see the news footage here:
KVUE- Play for All
At the end of the clip you can see the bench behind the 2 little girls on the swing. You can see John and Elmo (the poodle) at one point too.

After we left the park we all went to Torchy’s for lunch. I love Torchy’s! We sat outside and just relaxed and enjoyed everyone’s company while we ate lunch. After lunch we came home to change clothes and take my mom and John out to see the farm. While at home we picked up the second half of the books donated and wrapped by HMH for the upcoming Casey’s Christmas party. HMH is such a generous company and we are so lucky to have them as one of our supporters.

On our way out to the farm we drove through Killeen so that we could visit my grandparents graves. The VA cemetery is so well taken care of and it’s always nice to stop by for a visit. We haven’t made it out there in a while so I was glad we added that to our day.

My mom and John seemed to like the farm. John is an electrical engineer and has restored some really old houses himself so it was helpful to get his take on some of our projects out there. I am sure we will be dragging them both back out there frequently while we work on the wiring.

After we got back home a lovely couple that we met around this time last year came by to drop off ornaments for the families that attend our bereavement Angel Ornament Dinner for Casey’s Circle. The wife heard about us through Hallmark and reached out to donate ornaments and lots of goodies for the families last year. This year they totally outdid themselves. She was able to get a special ornament and modify it so that it will be a gift all of the families will be able to take home. She even had special ribbon made for the ornaments and updated the boxes- no detail was missed. They donated a bunch of other ornaments, gifts for the kids and families, and even reached out to another couple that donated a bunch of goodies too.

Spending the day with close friends and family, and topping it off with the generosity of wonderful friends we have made through Casey’s Circle made yesterday a pretty great day. We felt very blessed, and felt very close to Casey and my grandparents yesterday. Today we get back to work. Tim has some orders to fill for Timber Hearts, I have test on Monday and lots of work to do for Casey’s Circle, Navigate Life and of course around the house and the farm (as always).

I haven’t updated this site in a while for a few reasons. I have been pretty busy, doing a lot of different things. And, I have’t known what to say. It’s hard to write about my feelings, and we aren’t going on Casey adventures anymore. There have been many times I have come to write something but have opted not to. Everyday is still very challenging for me. I try to keep busy so that I don’t fall into a pit of despair, but everything catches up to me anytime that I stop. My heart is still in a million pieces and I do my best to keep it together, but I am still very broken.

I recently went back to school full time. Going back to work in the tech industry didn’t feel right for me anymore. I really want to stay in the special needs community and with Casey’s friends and other kids like her. I have decided I want to work toward becoming a pediatric nurse practitioner and work with Palliative specializing in complex kids. It’s a LOT of work to get there though so I decided to dive in and get started. I should finish all of my non-nursing classes and pre-reqs this semester to officially appply (and hopefully get in to) the nursing program. The first step will be to get my BSN. This will get me the credentials to work in the hospitals or clinics. I plan/hope to work in the hospitals for about a year and then get into the masters program to get the next level- nurse practitioner.

Shortly after Casey passed away we decided to continue all of the programs, events, etc that we started with and for her in her name. We created a nonprofit and named it Casey’s Circle. Keeping up with the nonprofit details, planning events, enhancing tools, building community relationships and all of the many different things needed to run a nonprofit keep Tim and I both pretty busy. The annual holiday party is coming up in about a month. It’s our biggest event, but something Casey always loved. It’s an emotional event for us to do without her, but it’s something we promised her we would keep doing for her.

Tim is still working full time, but he helps a lot with Casey’s Circle stuff in his free time and he has created his own little side project that he does in his free time too- Timber Hearts. He got really good at woodworking (mostly to make stuff for Casey and me) and decided to start selling some of his stuff. He had his first booth at a local school festival a few weekends ago and it went really well.

Then, if work, school, Casey’s Circle and Timber Hearts isn’t enough, we also decided to buy a farm/ranch. Some friends of ours bought a ranch about 2 years ago and we both really liked being able to get away from everything and spend time with them out in the middle of nowhere. Tim watched land sales for a long time, and then we kind of fell into a perfect place. It was not even listed. There is a 75 year old house on it that needs to be fully gutted and there are 2 really old (probably closer to 100 year old) barns that are pretty cool too (also, need a lot of work). The land needs a lot of work. There are lots of dead trees that need to be pulled, cactus over growth, fences that need to be replaced/removed/installed, and lots more. We needed a project. We needed something we could do together, something that would get us away from everything, and something that with a lot of work and time we could later use to help us continue to heal and grieve. A place where we could turn off the phones, and reconnect with Casey on a more spiritual level.

We are still learning as we go. There is no right or wrong way to grieve, and we know that we will never stop grieving. We are trying really hard to keep moving forward though. The holidays coming up are really hard for us. Casey LOVED October-December.

Casey would always get excited to dress up for Halloween and go see her doctors and nurses. This was our second Halloween without her and we still could not handle being home and answering the door for trick-or-treaters. Casey loved helping us hand out candy and treats each year. Last year we went to dinner and a movie and just stayed out all evening to avoid them. This year we decided to drive out to the farm and just hang out for a few hours.

Thanksgiving was always Casey and my day. Tim would take my grandpa (or grandparents when they were both here) over to my sister’s house and Casey and I would have the day to ourselves. We would watch the parade together, snuggle on the couch, and just relax and enjoy time together. Tim would bring me a to-go plate when he came home, but Thanksgiving for me over the past years has been about a quiet day to reflect on things I’m thankful for (especially time with Casey). Last year Tim’s brother had just moved to Texas and his oldest daughter was turning 16 a few days after Thanksgiving. Tim’s mom flew in for the holiday and sweet 16 and his brother wanted us to come up to Dallas to join in. We told them we were not ready for holidays, but we would come the day after for the birthday party. The birthday got moved to Thanksgiving day and we ended up going. It was really hard for us. Christmas was even harder. This year my sister wants us to both come to her house for Thanksgiving. I really wish people understood why this is something we simply aren’t ready for, and may never be.

Going back to spending the holidays the way we did before Casey feels like we are totally discounting that she was ever here. It just feels wrong to go back to the way things used to be. Doing things the same as we did with her is really hard too. How we can go through the same motions we did with her- without her now?! Nothing feels right.

Last year we started going to a holiday support group and we were with other families that had lost a child. Some recent, some a while back. Holidays were still hard for those that were not new to this as well, and we all said the same thing. Nothing feels right and just going back to the way it was is not the answer.

We need to find a new way to celebrate the holidays. Something that includes the family, but that doesn’t feel like what we did before Casey or with Casey. We need new traditions and to change things up.

For this year, we just need time to grieve without the added guilt that we aren’t joining the family gatherings. It’s not personal. It’s not that we don’t want to be with family- we do want to spend time with family. We just aren’t ready for the holidays at all.

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.

Over 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.

We 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.

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.

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.