Life Doesn't Have to be Perfect to be Beautiful. That saying is all over my house and on my mind. It is not the motto I have always lived by, but it was my daughters. At age 21 she began her journey of what became every parent's nightmare. It took 2 years to be formally diagnosed with a terminal lung disease that would ultimately lead to a double lung transplant on April 28,2017. I will share more of her story on her diseases later, she had her own blog and I read it over and over, along with her journals. I am privileged to share her faith, her hope and beauty as well as my struggles and grief. Madi challenged many people to live by her motto but most of all her dad and I. We are inspired during the hardest days to know how hard she fought to live physically and make the most of the moments she had. In September, I joked she was a quarter of a century, I never imagined that 2 months after she blew out her birthday candles she would take her last breath.
I grieve not only the loss of Madi but my own life as well. This is our first summer without Madi here, as well as, her 2 precious children ages 5 and 7 have moved 2 hours away, and my son is at college. If you knew my house and life the last 4 years you would know that there was a revolving door of people that came to help with Madi and the kids. There was always chaos. It seemed we were never at a truly peaceful moment for long. She would get better and then suddenly be sick again. If you are a caregiver or live with someone who is chronically ill you know what I mean. Our life changed those 4 years as well, we were not free to be empty nesters and take vacations or go out with friends because we were usually called back to care for Madi. I know she hated that part, I hated it too, but I would do anything to have it back.
I have always loved to write, it is therapeutic. My first goal is to record for my grandchildren what an amazing woman their mother is, how much she loves them and could never leave them. Her fight to physically stay here was nothing short of heroic. If in that ambition, I help myself or others along the way then it will be all the more a testament to the inspiration that Madi has left us all.