From the wee hours of Thursday the 5th of September I forced myself to keep the homecoming  day at a distance. I shoved my laptop away and thought don’t think about Summit Blvd and nothing can interfere with our final day. Then came my birthday at the end of August. As a kid it was…

Most of our lives we sling words around without understanding their power. Words like: joy-pain, courage-accept, beauty-sacrifice, celebrate-honor. At my son’s side this past summer, I have lived out the definitions of these words. I appreciate how difficult it is to produce a smile while maintaining a household, process the daily routine after a life…

Day 89 of 90 brings the most significant bronch/biopsy in our schedule.Until the phone rings in the late afternoon with a confident voice relaying “A=0, B=0 “indicating no signs of rejection, my gut will stay on spin cycle. That is the last box to check before we change our address. Albeit always a hue of…

June 20th  Leaving on Easter Sunday, Will and I have been determined to transform this city into ours. But in two weeks, it’s the Fourth of July and progress has been slow at owning our place. Although we have reminders of home and have added touches of style, filling the void of the dearest things…

Early on the morning of June 8th: Give.  Offer something you have so others may benefit. Give for those without the means of survival. Give for those without a voice. Give especially when that voice rings loud with the courage to ask for help. Give so a son can enjoy a different life, a long…

July 20th Truly the dog days of Summer from the Lou:Will has been admitted back to the the hospital during the hottest weekend of the year. His lungs are great and from a pulmonary standpoint post transplant, he remains on tract for recovery. However, his nausea and vomiting is still uncontrollable. He’s lost a fair…

After a long anticipated wait, we received a phone call on June 7th at 14:08 informing us that a donor offer for double lung transplant had been accepted by the St. Louis team. The lungs are the last organs removed and survive out of the body for a mere four hours. Given that, OR timing…

https://www.stlouischildrens.org

June 14th:Will is truly one of a kind. In all the struggles of his life thus far, he has overcome those moments with a lousy pair of lungs. At just 14 due to a bacterial war in his lungs, cystic fibrosis was calling the shots. Although they said they have seen worse, he definitely ranked…