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.

There 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”?

I 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.

Our daughter Casey had a traumatic birth that caused a severe brain injury. Her doctors didn’t think she would ever go home, but her whole life she proved them wrong. Once we got home, Marty and I had to handle not only the medical issues, but also wanted to help Casey do the things she loved as often as she could. This was challenging as it was very difficult for Casey to show or tell us when she liked something. But it was amazing what she could tell us and the choices she could make with only small movements or sounds.

Casey’s doctors would say that she was clinically deaf, but that was mostly because she didn’t have the physical control to pass a hearing test. Anyone that spent time with Casey knew that she could hear you very well. She could tell the difference between people’s voices and would let you know if she liked or didn’t like something you were saying.

When Casey was very young, we discovered that she really enjoyed music. She had so many toys that played music and we would sit with her and watch how happy she was hearing all these new and different sounds. She had an Elmo toy that had different buttons that played short songs with Elmo singing – one for country, hip hop, rock, and a couple others. Casey really liked the hip hop button. She didn’t get that from her parents, but it made her happy so we listened to it as much as she wanted.

At the time Casey was born, I probably had owned a guitar for about 8 years. I knew some chords and could play a few popular songs, but for the most part my guitar sat there by my desk gathering dust. As Casey got older, we started having a music therapist come to see her every couple weeks. Her therapist, Danielle, played guitar and also introduced Casey to drums, piano, maracas, a ukulele and so many more instruments. Danielle also has a beautiful singing voice, and Casey loved to sing with her.

After seeing how much Casey loved music therapy, I gradually dusted off my guitar and started to play again with Casey. I wasn’t near as good as Danielle, and Casey could tell, but she didn’t give me too hard of a time. Danielle kept coming to see Casey every other week, and Casey and I would have our own “rockin’ out with Daddy” sessions. As the years rolled on, we went from playing every other week, to every week, to eventually every day. We played Spanish songs, country songs, rock and pop, blues, and occasionally some (quietly played) metal if Marty let us. I even learned some My Little Pony’s songs for her, and she knew all the words to those.

Many days after work while Marty was cooking dinner, I would hang out with Casey on the couch with my guitar and her ipad. We would go through a bunch of songs and she would tell me which ones she wanted to hear. It didn’t matter if the song wasn’t my style or too easy/hard to play. If Casey liked a song, then I would try to play it for her. And if she was feeling well enough, she would try to sing it to me. This was our special time, easily the highlight of my day, and I am thankful we did this so often the last couple years.

The night before Casey passed away, I sat with her and my guitar on the couch while Marty was taking a break. She was on her bipap machine, too tired to sing along or pick her songs anymore, but I played a few of her favorites. I played my acoustic guitar so she could feel the songs, since her loud equipment made it harder to hear. It felt different than all the other times. I remember being scared that it could be the last time I played for her, and it turns out it was.

I didn’t know if I would ever pick up my guitar again, because I thought it would be too painful or lonely to play without her next to me. But eventually it became too painful not to play. I missed all the songs we shared and didn’t want to forget how to play them. I started slowly, and stayed away from a few songs that were her absolute favorites because they would be too hard to get through. I do miss her when I play, but find more comfort than sadness. I try to remember her beautiful eyes looking up at me and the way her hand felt on my lap and of course the sound of her voice singing.

I still play guitar every day, more than I ever did before. Marty got me some guitar picks made with Casey’s fingerprint on them, so now when I play it’s like we are still holding hands. Every time I learn a new song, I think about whether it would be one of Casey’s new favorites and how many times we would play it together on the couch while Marty cooked dinner.