Welcome to My Father’s Daughter! I’m nothing if not my Heavenly Father’s Daughter!
I’ve created this blog to help people find peace in the midst of the sufferings in this life and to also offer hope to individuals that suffer from the rare neurological diseases that have caused so much of my own suffering, specifically Symptomatic Tarlov Cyst Disease.
I decided to create this place to share the lessons that I have learned throughout a life that has been filled with struggles of every type. I have two objectives. To share my life of faith and to share the medical expertise that I have had to fight to gain over decades of living with rare, misunderstood diseases. I’m not very tech savvy so I didn’t want to create two separate spaces. Besides, in my journey, the two have been experienced side by side. Maybe eventually I will create a stand alone “medical blog” but for now it will all be on this site. I’ve lead a very unique life of both suffering and the miraculous. People have told me for decades now that I needed to write a book but I never felt like my Heavenly Father had released me to do so. He was telling me “Not now daughter”. I knew that when it was His will for me to publicly share my journey and the lessons learned through it, He would release His words within my spirit and it would be easy. That’s one thing that I’ve learned in my years of ministry. When it’s His will, and His timing, it’s easy. No matter how great the task, when we are walking in His perfect will, it doesn’t feel like a burden or work. I have been married for 32 years to my husband Steve, and we’ve been blessed with 3 children. Our first son Robby was my greatest “professor” of life, medicine, and theology. He was born at 25 weeks, at 1lb 12oz, and had a very difficult life, dying at 2 years old. Then came my second son, my “joy after sorrow” who is now 25 years old and still a joy. Lastly is my daughter, who was the completion of my “million dollar” perfect family, and at 23 is the kindest human being that I’ve ever met. She’s my biggest supporter, but she’s everyone’s biggest supporter! Our family is also blessed to have my mother and stepfather live with us and my wonderful Mother in Law, who my children live with and help take care of. After Robby’s death I attended seminary and became a hospital chaplain. I started and ran a support group for parents whose children had died, before social media, and would also go into hospitals when a child was brain injured or I was needed to help parents of sick or dying children. I had determined that I would “Be a better person because he lived, not a bitter person because he died”. I was a part of that ministry for almost a decade until my own medical mysteries began to slow me down, eventually robbing me of all “vocational ministry” abilities. I eventually had to physically leave the church but I never left my faith. Many of the “religious people” inside the Church both judged me as “backslidden” and abandoned me in friendship. It was a very lonely and sad time for me but my Father never abandoned me and actually had a plan for this separation. I forgave everyone who hurt me and submitted myself to the new call that my Father had planned for me. I spent the next decade working to find my mystery illness, which I figured out on my own. I was fortunate to have resources available to me that most people don’t have because of connections through my husband’s job. I was able to work with leading researchers and doctors who were studying these conditions and eventually became my own expert, helping many with my conditions and also helping local doctors if they had patients diagnosed with these diseases. Today I’m living a blessed life, after being partially paralyzed and homebound for over 5 years. In that time I have had the time to study, pray and write many lessons learned through the journey of suffering. I hope that these writing will help many others as well. I’m going to be writing about spiritual lessons learned and also have space for medical information regarding my medical journey too.
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