Picking Up the Pieces After Losing My Daughter to a Life-Limiting Illness

I have had a lot of family and friends come by, call, email, text, etc. to make sure I am OK. I don’t really know how to answer them. I am alive, and I am doing my best to move forward. But no, I am not OK. I don’t know that I ever will be.

Casey hated when people would cry or get angry near her, so I know she would be furious with me if I spent all day, every day just crying and being angry at the world for taking my baby from me. I also want to make her proud of me. I want to continue the work she inspired within the special needs community. I want to keep her name and her memory alive by helping as many families like ours as I can. So for these reasons, I get up every morning (if I slept that night); I get dressed, and I do my best to move forward.

I have spent the past 10 years with one single motivating factor: Everything I did, I did for her. I know, I know, queue the Bryan Adams song. It’s true though. If I was home, I was managing her airway, protecting her skin, giving medications and food by her feeding tube, changing diapers, and working on her schedule. When I was out, I was usually picking up something she needed or working on setting up something special for her and her friends. There were a few occasions I would do something for myself, but even then, it was still “kind of” for her. I had to keep my own health (physical and mental) in check in order to be able to care for her. Luckily we had an amazing team of nurses to help with all of this as well. Even with the nurses here though, the last six to 12 months often required the nurses and myself to tend to Casey’s needs.

For 10 years all I have known is caring for Casey. Being there, caring for her is all I wanted. I knew from the moment she was born that every moment with her was a gift. She was never expected to go home at all. Making it to almost 10 years is nothing short of a miracle.

I have talked about and am slowly working on setting up a nonprofit in Casey’s name to carry on all of the projects she inspired over the years. A lot of people worry what I will do now. Well, part of what I do now is create a legacy for my baby girl that will make her proud.

Losing a child is not black and white. You don’t grieve for a few days and then snap out of it. There are little sounds I hear, things I see  — sometimes I have no idea what sets off a sadness that overcomes me. My heart is broken, and as I held her during her last hours on Earth, I could feel her spirit lifting away. As she lifted away, she took a very large part of me with her. That part will never be filled. I can function without it, and I can find happiness without it. I can live with a part of my soul missing. It will forever hurt, and I will always hope to see her when I open my eyes, enter a room, or drift off to sleep. I try to focus on our good memories and her sparkle. She really did light up every room she entered.

It’s going to take some time to find “me” again, but I will get there. After doing the same thing every day for 10 years, it’s hard to just change. I still head toward the medicine cabinet at 5 p.m. to draw up her medication. When I wake in the middle of the night, I still listen for the sound of her breathing through the monitors. I still expect to hear a knock at the door when the nurses would typically arrive. All of these things will take time.

I feel kind of like a reflection in a broken mirror. You can kind of tell it’s me, but there are parts missing. As time goes by, some of the pieces will be able to be repaired, but not all of them.

Many people want to know when we are going on a vacation. I understand this question. We haven’t really done anything like that in the past 10 years. However, going on a vacation is not on our list of things to do right away. We are taking baby steps. We are getting out and around town now, and maybe later this summer we will do a day trip or two. We’ll work our way up to a vacation.

The first week after Casey passed, we could not eat or sleep at all. After Casey’s service we were able to bring her ashes home, which has helped me so much. Our house was not right without her here, but after bringing her home I was able to sleep and eat a little more. Some of Casey’s friends who have come by the house go directly to her urn and talk to her. I don’t know how they know to do this, but seeing this fills me with so much love.

We appreciate all of the meals, cards and everyone checking in on us. We think we are doing pretty good on most days, and we just ask that you bear with us. Say her name. Share memories you have of her. Send us pictures you have of her. Let us know if you saw something that made you think of her. We miss her every second of every day. It’s OK to let us be sad. We have to work through it, and some days (or moments) are just going to be hard for us. We don’t have the answers any more than you do. Everyone grieves in their own ways and in their own time.

Luckily, in a way, we had 10 years prepare. And during our last two hours snuggled together as a family, we were able to say everything that needed to be said.

Follow this journey on Casey Barnes.