It has been quite some time since I've attended a place of worship and while I have a strong faith, I don't have a strong attraction to buildings where people gather to worship. However, while in St. Louis, I took the opportunity to attend two different services, both of which seemed to speak to me. On Friday evening, I attended Shabbat service with our friends David and Amy. I loved everything about it - the music, the readings and the feeling of community. During the d'var Torah (sermon), the Rabbi shared a story of a family in the congregation who had recently lost their son to cancer and the message was about being there for others in their time of loss. Such an appropriate message as I sat between my two dear friends who have been there for us and supported us since the day Jack was born.
On Sunday, I spent the entire day with Jack's neurologist. When I asked her if she would have some time to see me during my visit, I didn't expect her to give me an entire day of her time. We started the day by attending Mass together at a beautiful old Catholic church on the campus of St. Louis University. The sermon that day was about friendship. The message wasn't lost on of either of us, as we both recognized the friendship we share. We spent the rest of the day together - talking, visiting the Missouri Botanical Gardens and raising our beer glasses in a toast to Jack at a local Irish pub. While we talked about many things, I did ask her to put on her physician hat at one point because there were two things I needed to know from her: (1) what she believed caused Jack to be in so much pain; and (2) why was Jack no longer able to be supported by the ventilator at the end. In her opinion, both came down to heart failure. What she explained to me made sense. (She is one of the top neurologists in the country, so I suppose she should make sense.) I needed to know and believe that there wasn't anything more I could have done for Jack - something I hadn't yet been able to find peace with. She gave me answers that I could accept.
During my week in St. Louis, I shared memories and tears with some of Jack's former nurses, both home health nurses and hospital nurses. I spent a couple of days with Peg, enjoyed time with my sweet friend Jenny, went on a couple of great hikes and was pampered by our friends, David and Amy. I'm so grateful for all the love and memories shared with "Jack's people".
The most emotional day for me was the day I spent on the St. Louis Children's Hospital campus. I started the day by meeting Jack's neurologist for an early lunch (apparently, she wasn't tired of me yet). As we were walking back from lunch, she pointed out a willow tree, not knowing its significance to me. I didn't recall seeing the willow tree during our last visit to Children's and I probably wouldn't have even noticed it if Jack's neurologist hadn't pointed it out to me.
After saying good-bye to Jack's neurologist, I went by the eye clinic and left an "Onward" stone for Jack's ophthalmologist and then to the ENT clinic where I gave an Onward stone to the trach nurse and also left one for Jack's ENT. I included a note with the stones so they would know the meaning behind the "Onward" message. I walked around the hospital, as much as I could, and spent some time in the chapel where I had prayed so many unanswered prayers. I walked around the Washington University Medical School campus and went by the Central Institute for the Deaf - the place that brought us to St. Louis in the first place. So many memories as I was walking around. Thinking more about the significance of the willow tree on the campus of St. Louis Children's Hospital, I felt moved to bury an Onward stone at the base of the tree. What better way to move Onward than to leave all the burdens and painful memories with the willow tree. Ever Bending, Never Breaking. A sign from Jack? I'd like to believe so.
After I buried the stone, I stood by the tree and listened to a song on my playlist titled "Fly Away". The song is on an album of lullabies that I would listen to with Jack. When that song would come on, especially during Jack's final days, I would imagine Jack flying away to heaven - away from all the pain and hardships of his life. I stood by the tree and allowed the tears to fall.
I will be honest and tell you that after being back at St. Louis Children's and seeing so many children who are enduring many of the same challenges as my sweet Jack, I walked out of the doors for the last time knowing that I'm glad to be done with it all. I'm glad for Jack to be done with it all. No more medical people. No more x-rays, ct scans, echos, bronchs, anesthesia, surgeries, blood draws, IVs, wheelchairs, trachs and vents. No more trying to outrun a disease that was always going to win in the end. Yes, I would do it all over again and yes, I would continue to do it all if Jack was still here. Yes, I will always profoundly miss my beautiful son, but I don't wish him back here. He is free and that gives me peace.
Spending last week in St. Louis was very healing for me. The word that best describes how I feel after talking with Jack's neurologist and getting the answers to my questions, after being back at Children's Hospital, and after leaving it all at the base of the willow tree is "UNBURDENED". I feel like I was able to let go of so many emotions - not the least of which is guilt. I finally feel some peace for Jack and for me. I also feel like I'm going to be okay.
I've heard people say that a cardinal represents a loved one who has died. The picture at the top of this post was taken while walking through the Missouri Botanical Gardens with Jack's neurologist. A sign from Jack? I'd like to believe so.