They say there are five stages of grief. I suppose there’s science behind it and the framework holds true for many people, but I’ve only known one stage since we first learned four months ago that Stephanie’s life would be cut short… heartbreak. It’s what I immediately felt on that cold Sunday morning in late January when we learned she had a rare liver disease, Primary Sclerosing Cholangitis. Continue reading “I Know the Exact Moment I Lost Hope”
Our Worst Nightmares Don’t End When We Open Our Eyes
The ten weeks since our daughter, Stephanie, was diagnosed with primary sclerosing cholangitis (PSC) have been a blur of hospitals, tests, and surgical procedures. A steady stream of GI specialists, radiologists and surgeons have poked, prodded and asked the same questions over and over. But despite their collective wisdom, they seemed to have no idea why Stephanie appeared to have skipped over the beginning stages of this normally slowly progressing liver disease and landed somewhere closer to the end.
Well, that’s not exactly true . . . they had one idea. Continue reading “Our Worst Nightmares Don’t End When We Open Our Eyes”
New York City Through the Eyes of My Forever Child
This trip was years in the making and like most weekend jaunts, just as we picked up the pulse of the city it was over. But then I never have enough time in New York City. Fortunately for my daughter, Stephanie, it was everything she had dreamed it would be and since this getaway had one specific purpose – to celebrate her thirtieth birthday – having it live up to her expectations was all that mattered. Continue reading “New York City Through the Eyes of My Forever Child”
World Down Syndrome Day: My Thirty Year Perspective
I did not invite Down syndrome into my life; it crashed my party. In that devastating moment when my hopes and dreams for my newborn daughter were ripped away, I couldn’t imagine anything could be worse. Fast forward thirty years, and hindsight, as it often does, has replaced the pain and fear I felt in those early days after Stephanie was born with appreciation for an amazing journey that with all its challenges and flaws has made us a stronger family and me a better person.
Today is World Down Syndrome Day and I suspect the average person woke up this morning not knowing that; I certainly had no idea. Continue reading “World Down Syndrome Day: My Thirty Year Perspective”