How do we tell our daughters how much we love them? How do we describe how deep our desire is for them to be happy and live full, adventurous and glorious lives? It’s almost overwhelming.

When my daughter was just a few weeks old I was diagnosed with a chronic and terminal autoimmune disorder. There are no words to describe the absolute terror I felt – not of death, but of not being there for her as she grew up, or when she got married or had children. I was 31 years old, and the day of my diagnosis, as I was holding my newborn baby in my arms, my world view changed forever.

I began purchasing books and films I wanted her to watch as she grew up. I didn’t know how long I would live, so I planned far into the future. I remember purchasing the remake of “A Little Princess” and “The Secret Garden,” films with strong, kind female protagonists. I perused used book stores and bought every Newberry Award winning book ever written.  I feared I wouldn’t be alive to share these things with her, so I hoarded every book and movie I wanted her to experience in her childhood.

I made the most of every second. I refused to go back to work until she was in kindergarten. Every day was an adventure. We read books, baked cookies, had tea parties, made outdoor picnics in the summer and baked gingerbread in the winter. I savored every second with her. As she grew older and was in grade school, we would spend at least two hours every night reading – often finishing a Nancy Drew book or an American Girl book every evening. We didn’t have enough shelf space to hold all the books collected. Even in middle school, I would read the Harry Potter books to her every night—always in the appropriate regional British accent.

My parenting style was driven by the prognosis that I could die at any time. It sounds dramatic, but it was my reality. When I didn’t die without drastic intervention (organ transplant), my doctors were astounded. The truth is, my dire prognosis was a gift. My husband at the time would disagree whole-heartedly, as he took my illness as a personal affront to his happiness. It was rough at times, no doubt. My severe insomnia led to a tragic addiction to prescription medication to help me sleep. Without the support I needed to find a better solution, my marriage failed, and unfortunately, so did the relationship between my daughter and her father. We became an obstacle to his happiness, and as it turns out, he was an obstacle to ours.

Twenty years later I’m still here and I don’t regret how my diagnosis affected my parenting.  It still affects my parenting, even though my daughter is now an adult. This year we took a trip to Paris and Casablanca. I applied for a credit card with no interest for 16 months and loaded it up in exchange for the most incredible ten days with my favorite girl. I had others tell me it was a bad idea—that I should save the money and then take the trip. Oh hell no, I could be dead by then. It’s been three months since our trip of a lifetime and my credit card will be paid off in a couple of months. Do you know what that means? Yep, that means another trip of a lifetime with my daughter.  Fuck retirement. I’m not going to live that long anyway.

I hope I’m around to be with my daughter through future milestones and celebratory events in her life, especially since I’m now her only parent for all intents and purposes. However if I’m not, I believe she will always know how much I love her and despite my mistakes, faults and imperfections, I hope she loves me back even half as much.