I feel like this story has gone on for so long that the details have become fuzzy and I honestly didn't know where to start. So I decided to start in the present because it's clear and it's joyful and empowering.
I am a mom of two; a twelve year old son and a forever thirteen year old daughter. While I'm only in charge of the care of my son, I am no less of a mother to my daughter who earned her angel wings less than two years ago. Just writing that, I don't even know how that's possible. How can I not have touched her for almost two years? How has it been that long since I held her, painted her nails or reminded her to take a pill? It's unreal, yet at the same time, it's very much my reality. It's also what empowers me to live the biggest life possible. In the last year my business has boomed, I have traveled to many places and I took a chance and started my own "cooking show" on Facebook called The Joy Kitchen. I had never been the girl to live outside the box, but now I'm not afraid to be bold and live life to the fullest. I am laser focused on choosing joy each day and teaching others to do the same. This is my daughter's legacy and knowing that, I can do anything, and I will keep that legacy alive.
As for all the fuzzy details leading up to this incredible empowerment...the years run together. It all began when my daughter, Reese, was just about to turn 4. She had some rather large lymph nodes that we had to have biopsied. This was the first time I had ever sent a child off to surgery. It was so incredibly hard. Little did I know, I would lose count of the number of times I sent Reese into surgery. Reese was diagnosed with leukemia. Instantly, life changed. Who I was changed. We were hopeful that this would be a bump in the road because her odds were good. She never even lost her hair through almost three years of treatment. We celebrated and thought we had won the war. However, we had only won the first battle. Reese relapsed and had to undergo harsher chemo. This time, the hair did fall out. While undergoing treatment she developed a secondary diagnoses of MDS; her bone marrow had quit working. The best course of action was what I thought was my worst nightmare; a bone marrow transplant. I had followed others who had been through this and I knew it would be scary and difficult. For us it also meant leaving home behind for three months and being separated from my son, with only a handful of visits. The hair that had managed to grow back, fell out once again. Less than two years after the transplant, Reese's MDS relapsed and our hope was dwindling fast. We fought to use some new medicine, that wasn't designed for children, in order to prepare Reese for another bone marrow transplant. By this time, Reese's hair had grown in and was down to her shoulders and curly. She had never had curly hair before and we hadn't been able to do her hair in ages. Brushing, clipping, using the iron, buying a blow dryer...these were huge moments for us. Sadly those curls fell during the second transplant.
This never got easier. We came home in February after the second transplant and by April had another MDS relapse. We were out of options. We could do some scary hard chemo for a chance at a bandaid fix or we could give her quality of life and days full of joy. It was so difficult to follow Reese's lead to just finding joy. Should we have convinced her to go for the long shot temporary fix? Should we have made her verbally say exactly what she wanted? So many questions will sit in our hearts forever. We followed our hearts, our guts, and our daughter. She was ready for fun and for joy. We jammed so many memories and good times into the next 4 months. We rarely said no and we were surrounded by people near and far. There were days around Reese's 13th birthday in July when there was so much mail that it didn't fit in our mailbox. As we moved through July and August, Reese was needing lots of extra care. She had moved into bed with me and needed constant pain medicine. When she left our room, we would move the oversized chair up to the dining room table so she could be with us even if she was sleeping. She didn't have much to say, but she liked being where her people were.
On August 5th, 2016 Reese was tired of fighting and hurting. This time she used her words and said, "'Mom, I'm done." I did the only thing I could do. I told her that was okay and that I would be right there with her, and that's exactly what I did. And in the early morning hours of August 6th, we held her and heard her final breath. I had never felt so paralyzed in my life. I was the nurse, the rock, the organizer, the mom. In that moment, I was just destroyed.
I operated in a fog for a long time. I held onto part of my life that kept me from living in my closet, but I really don't remember much clearly. We held onto joy like a life raft. People would send us things that said joy or tag me on Facebook in a picture of something with joy. Her legacy was there and I knew my job was still to be Reese's protector, carrier of her legacy, and her mom.
This journey since 2007 has a purpose and that is to empower others and spread the message of choosing joy. Joy is different than happiness because it's a choice and not dependent on circumstances. You can grieve and still choose joy. You can be sad and still choose joy. You can be lonely and still choose joy. I never understood that I could could feel such joy and such deep grief at the same time. Realizing that was so powerful. Joy is power! My job is to spread that message. Now the title for my Facebook cooking page, 'The Joy Kitchen' makes more sense. Reese and I loved baking and watching cooking tv shows. I went live a few times cooking in my kitchen and just knew this was an the right avenue of spreading Reese's legacy. Friends, acquaintances, and strangers come up to me and tell me how I have inspired them to choose joy and get through the hard times. In my head all I can think is, I'm exactly where I'm supposed to be. I'm living authentic. I'm living big. I hope Reese is so proud.