I live in Chandler, Arizona and am mom to four children. My third child, Jack, was born with a rare form of congenital muscular dystrophy. Because of his disease, Jack suffered from severe muscular weakness that caused him to need a tracheostomy and the assistance of a ventilator to help him breathe. Jack was unable to walk or talk, he was fed through a feeding tube and he was dependent on others in every aspect of his life. Despite being born with a disease that stole so much from him, Jack radiated love every day of his life. He had eyes that smiled and stole your heart away. On January 5, 2014, Jack passed away at the age of 15 from complications related to his disease.
During Jack’s lifetime, I came to know other parents of medically fragile children like Jack. Through my own experiences, I understood the tremendous stresses placed on parents caring for children with complex medical needs. Recognizing the need for parents to take “time out” from the relentless demands of caring for their children, I founded the Willow Tree Foundation — an organization that funds respite activities for parents of medically fragile children. In Jack’s honor, I continue to do “our” work through the Foundation, sustained by his indomitable spirit and guided by his light.
- After Jack died, I connected with people who knew him — which in my case was through Facebook, email and in-person connections. I returned to Ryan House, which is the respite/hospice facility that Jack stayed at many times for respite and is also where he died. The staff knew him and were willing to talk to me about him. I also traveled back to St. Louis, which is where Jack’s primary doctors were, to visit with his doctors and tell them how thankful I was for all they did for Jack over the many years they cared for him. I made one last visit to St. Louis Children’s Hospital and knew, when I walked out the doors, it would be my last time. A little background — Jack was born in St. Louis, but when he was three years old, we moved back home to Arizona. But I was never able to find the quality of care in Phoenix that we had had in St. Louis, so we traveled back to St. Louis almost every year (sometimes we could go two years) for all of Jack’s care. We traveled 3,000 miles by car (round trip) so he could be cared for by doctors who cared! Two of his doctors from St. Louis came to Phoenix for his funeral, and one of them spoke at his funeral — truly remarkable.
- We had stones with the word “Onward” engraved on one side and “Love Jack” on the other. We handed these out at Jack’s funeral. But I also gave them to his doctors and other people who knew Jack but weren’t able to make it to his funeral. I literally sent them all over the country to every doctor who cared for Jack over the years — many of whom were no longer at St. Louis Children’s. Every one of the doctors was appreciative of the gesture and emailed to tell me how touched they were; this gave me so much strength — knowing that Jack was remembered by so many of his former doctors. I also buried an “Onward” stone at the base of a willow tree on the campus of St. Louis Children’s Hospital/Washington University Medical School when I went back for my final visit after Jack died — that was very healing.
- I also reached out to the Ryan House staff a few months after Jack died and asked them if they could put me in touch with another mom whose medically complex child had died. I really wanted to connect with someone who had lived a similar life in caring for a chronically ill/medically complex child for years and then had to learn how to live life without her child and the life that had defined her for so many years. My exact words were, “I need to know that I can survive this.” It was extremely helpful to meet another mom who was a few years out from the death of her child and who really understood what I was experiencing. Ironically, she and her daughter were at Ryan House for respite the same weekend Jack and I were when Ryan House opened in 2010. I remembered her, and she remembered me.
- The first year, we went out of town or avoided family get togethers on the major holidays. I come from a large family (I have five siblings, and between us, there are 20 kids). Holidays are a big deal as most of us live in the same city. But I just couldn’t do it. Breaking tradition helped me get through the holidays.
- I got out of town A LOT. Having the ability to travel was a freedom I really didn’t have during Jack’s life because getting nursing coverage was always a challenge. And, being home was too much of a reminder of Jack because he was home/bed bound most of the last year. So, just getting away from the house and out of town helped (some might say it was escapism, but the fact is, I needed to escape to survive, and I was fortunate I had a job that allowed me to take the time off and the financial resources to get the hell out of town).
- During the first few months after Jack died, I found Karen Gerstenberger and her blog, and I reached out to her via her blog and email. She was so kind and compassionate and willing to help me through those difficult months with her kind words and suggestions of where to reach out (she directed me to a grief website but I don’t recall which one). She was so validating of what I was feeling. I connected with Karen from the beginning. I read her book, I stayed in contact with her and she helped me walk through some very difficult times.
- I have a friend who I’ve hiked with almost every Sunday morning for many, many years. I made sure that I continued to get outside and hike. Plus, my hiking partner is my very best friend, and she was incredibly supportive during that first year. She “rescued” me more than once.
- I continued to blog and share how I was feeling with the many people who knew Jack from my online presence; they were (and continue to be) very supportive. They miss Jack, too.
- The cemetery Jack is buried in is about a mile and a half from my house, so I would go by every morning on my way to work and every evening on my way home. I just needed to “check on him” as unreasonable as that sounded to the average person. Just making sure his grave site and marker were clean and kept up made me feel like I was doing something for Jack. It helped a lot.