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.