This is what I shared over the past two days:
I am honored to be standing in front of you all tonight. All of you have given endless hours of your time and making a difference in the lives of the hospital’s children. Being a volunteer, I know you don’t just give your time, you give of your heart every time you walk through the atrium of the hospital.
The reason I am here tonight is my 9-years old son Jacob living with a Mitochondrial disease. His mitochondria in his cells are failing. When your mitochondria fail, your life is severely compromised. For Jacob it means he lives with severe epilepsy, chronic lung disease, ulcerative colitis, global developmental delays and many other diagnoses. Jacob has spent too many nights in this hospital for me to count them. He is seen in 15+ Clinics throughout the hospital, and there is never a month going by without doctor’s appointments on our schedule. In the last nine years, Children’s has become our second home. If we’re not home, we are at Children’s.
I want to bring you back to the time I started to volunteer for Children’s Hospital, the year was 2009. Jacob was struggling with uncontrolled seizures, and we had even attempted a medicine induced coma to stop the seizures, but nothing seemed to help. Jacob’s medical team didn't know if Jacob would survive the winter. We started having end of life discussions, and Jacob’s doctors were afraid Jacob would not celebrate his 4th birthday. I was devastated. I was heartbroken. I was told to take my boy home, and wait for him to pass. I am not exactly sure how you do that, but when you have a child who needs you every hour of the day, you still find a way to get out of bed and get through the day. I think it is called resilience. That winter, I started grieving Jacob even if he was still with us. In the middle of this grief process, I had this very strong desire to find a way to stay connected with Children’s. Maybe my son was not going to need this hospital any longer, but I needed Children’s Hospital in my life. That is the time I started to explore possibilities to volunteer in the hospital. My first project was with the Special Care Clinic collaborating on a national project to improve quality of care for children with epilepsy.
One thing led to another, and over the years I have become a Parent Partner of this hospital. I get to serve as the voice of parents and making sure this is the best hospital possible for our children. Not just for Jacob, but for all of them. I've been a Parent Chair of the Family Advisory Council for the last four years. It’s a great honor to lead this group of dedicated parents and hospital leaders. I am a Board Member of the Quality & Safety Committee of the Board. I have been sitting on endless committees making sure the parent perspective is provided. My biggest passion is patient safety – keeping our kids safe while in the hospital. I am also actively involved with the Mitochondrial Clinic, and partnering with the doctors in that clinic. My latest challenge is in the research field being a co-investigator on a multi-year project promoting patient engagement at every stage of this research project.
My volunteering started with a very strong feeling of survival to today answering emails daily from someone at Children’s and doing something for this hospital every week. The best part is that I get to play here at Children’s, and still have my inspiration, my son Jacob, in my life. I am also fortunate to have collaborated with so many of Children’s Hospital’s staff. From all my volunteering, some true friendships and great partnerships have blossomed.
This hospital is very fortunate to have so many dedicated volunteers. What is it that drives us to come here over and over again? I think I know.
I recently read an article about grief written by Paula Stephens. The article talks about the question why as part of the grief process. Why did this happen to me? Why often offers more questions than answers and keeps the grief in the rear view mirror. The author suggests to include the word how. How explores possibilities, and shines a light into the future. This spoke to me. When I accepted my why - why I have a son living with a life threatening progressive disorder with an uncertain future, and started focusing on the how – how to make a life with my son and enjoy every moment of it. I realized Children’s has become part of my how. My how to make life better for Jacob and so many other children.
Thank you Children’s Hospital for being my how, and for letting Jacob and my family be part of your vision from board to bedside. It means the world to me. Thank you so very much.
I was so happy Jacob made it to the lunch today. I also think my sometimes critical girl was proud of her mama. She even dressed up two days in a row without any complaints.
Have a great weekend everyone,