Broken Hearts Christmas Day, 2010
Rare Disease is usually not curable or treatable but often it is manageable. Over the last 11 years, I have had the privilege of watching and learning about the extraordinary journey of families who have to often fight to care and treat their children with rare diseases. It is so complex. There is the medical community to contend with, the school system to work or fight with, and the physical and emotional demands that often destroy marriages. The divorce rate is somewhere between 75-80% depending on who you ask. There is also the financial strain families deal with in providing care. Then there is the heart of a parent that is advocating for her child with rare disease, fragile and weak at times, strong, and steady at others. The road for families with rare disease is unique and not well traveled. There are daily battles and burdens quite different than one would expect. My own journey began 5 years ago and continues. The road is difficult but doable with GOD, family, and friends who travel with me. The hardest days are the days when we hit heartache, like the loss of a loved one on the journey. While we know they are free of pain and suffering and now are TRULY whole in a heavenly body, the deep loss still hurts as we look in the eyes of another who knows our battle in the fight to care for our kids. Even when we recognize that heaven is now their home, it doesn’t take away the sting from the loss and the years fought in caring for them. My heart is enlarged tonight for a family, near and dear, who today is yet again fighting a new fight of disappointment and grief as they have said goodbye here on earth. My prayer for all of us, who battle daily in rare disease, is that we would continue to stand strong in faith, with out-stretched arms and hearts in the hour of need. That we would love, laugh, cry and draw from God on the journey to help us win the race and continue to do what is needed in caring for our kids and helping each other. Frase family, we stand with you, arms open and hearts enlarged as you grieve the loss of a champion and a hero to every one of us. Josh we miss you so and will one day see you again, dear friend. www.joshuafrase.org
