I will be writing about the joys and challenges of parenting a child with a chronic and progressive disability. If not for my son, I would have never known how often children and adults with disabilities are discriminated against and not truly valued in our society and world. I have never been good with injustice.
Hayes was four years and nine months old when we got the diagnosis, and he would be starting kindergarten in five months. The recent medical evaluations qualified him as a preschooler with special education needs. (If this is your first visit to my website, you… Read More »Preschoolers With Special Education Needs
Which Will You Choose? In deep sorrow, choosing Peace or Grief seems like a no-brainer, but it is not. Your heart leads you one way while your mind takes you in a different direction. After our son’s diagnosis, I often felt like I was losing… Read More »Peace Or Grief
The Neurologist The three of us went to the neurologist appointment. Pete and I had no idea this appointment would be the continuation of a four year diagnostic process to determine whether Hayes had Duchenne or Becker muscular dystrophy. The neurologist was great with Hayes,… Read More »Four Year Diagnostic Process
This post is the second in a series following previously published Diagnosis And Death Certificate. All I could feel was an urgency to go to the Muscular Dystrophy Association office. The ride from the pediatric orthopedic surgeon’s appointment to pick Hayes up from the Mother’s… Read More »Muscular Dystrophy Association
Nobody ever thinks this will happen to them. This survival tale is what I call The Day of Diagnosis and Death Certificate. I guess every house has a history of smiles and tears. We had lived in our fixer-upper emerging home for four years, as… Read More »Diagnosis And Death Certificate
This blog survival tale begins where Fixer Upper Part Two ended. When Hayes was about 18 months old, Pete’s dad surprised us by expressing interest in meeting his grandson and seeing our house. I remember it as the fun visit and Frog’s Farewell. Frog Is… Read More »Frog’s Farewell
About two years after Mom passed away in her sleep, I turned to my Aunt Dolores in my desperation to meet my lingering sorrow and fears head-on. She lived in Florida and I was in Albuquerque. My aunt sent the letter that saved my life.… Read More »The Letter That Saved My Life
The mission of How To Survive After Finding A Loved One’s Body and each of my stories is to show what happened to me, share what I learned, and encourage others to keep moving forward from life’s most unexpected challenges. As I wrote about in… Read More »How To Survive After Finding A Loved One’s Body
Unspeakable Secrets and Forgiveness collided. Everything came undone when I thought our family finally had it all. The visual of seeing my mom’s lifeless body in bed completely overtook my ability to function. I desperately wanted to remember that she passed away peacefully in her… Read More »Unspeakable Secrets And Forgiveness
This story from our fixer-upper days, Sledgehammers and Silent Night, illuminates our challenges. Some were visible, and one required a 911 call. Sledgehammers We had lived in our house for about ten days. Pete was worn out and home sick with the flu. He made… Read More »Sledgehammers And Silent Night