And when great souls die, after a period peace blooms, slowly and always irregularly. Our senses, restored, never to be the same, whisper to us. They existed. They existed. We can be. Be and be better. For they existed.
-Maya Angelou

Monday, April 25, 2016

Blog Silence

I realize it's been months since I've written anything on the blog. I've started several blog posts, but can't seem to finish them. Lately, I've felt the pull to sit down and blog. So, here I am. 

I left off in early January and the two year mark without our sweet Jack. 

The first weekend in February I attended a three-day religious/spiritual retreat for women that was put on by my friend Jenny's Catholic Church in St. Louis. Jenny went on the retreat the year before and listening to her share how impactful the weekend was for her, it didn't take much to convince me to sign up. To say I was profoundly moved and uplifted is an understatement. The weekend had Jack written all over it. There was a part of the retreat when family and friends came to sing and celebrate with us. Of course, being from out of town, my family wasn't there. It was a bit overwhelming and I was just taking it all in when Jenny tapped me on the shoulder and pointed to someone in the crowd. I looked in the direction she pointed and there was Jack's neurologist. She showed up to support me. I was so moved and humbled by her act of kindness. To quote my friend, Jean - Why me?

During one of our longer break times, I went outside to walk around the grounds. At the entrance of the retreat center was a willow tree. 

It's a little anemic because it's Winter, but I promise it is a willow tree. 

At one point I look up to the clouds and saw this -
a heart.

Then, on the last day of the retreat as we were waiting to enter the church for mass, I met a woman who was part of the team that facilitated the weekend. She mentioned to Jenny that she recognized me, but she couldn't place me. Jenny filled her in on who I was. Come to find out that she was part of the pain management team that cared for Jack at St. Louis Children's Hospital when he had his spinal fusion surgery in 2006. She knew who Jack was and remembered him. Another Wow! moment. 

I suppose some will say that we "see" the signs we want to see and there's nothing more to it than that. But I can tell you that I went to the retreat with no expectations, but with an open heart and open mind. The weekend exceeded anything I could have ever imagined. I left feeling uplifted and loved. They told us at the end of the retreat that we had to be prepared to "come down from the mountain." I carried the awesomeness of that weekend with me for a long time. But, I think it's safe to say, I've now come down from the mountain. 

I prefer the top of the mountain.

I'm spending most of my weekends working on my book and another writing project. Several people have mentioned to me that they thought I'm writing a book about "Jack's Journey." I'm not. I'm collaborating on a book with one of Jack's former doctors. My part of the book involves writing parent stories involving physician encounters that had a significant impact on them (both positive and not-so-positive). I'm writing stories about my own encounters with doctors over the years, and I'm getting stories from other parents of medically fragile/complex children. Once I finish my first group of stories, I'll get them to my co-author and he will write the physician's side of the encounter. Obviously, he isn't the actual physician involved in the story, but he will write based on his many years of experience. The idea is definitely unique. I think it will be a great opportunity to educate both physicians and parents. I hope to finish my first round of stories within the next month or two. It's taking me much longer than I want to finish my part, but I'm trying to exercise patience. Not one of my stronger attributes.

I was also invited to help write a chapter in a book for medical professionals that deals with the management of neuromuscular diseases in children. Our chapter is the parents' perspective. The section I'm working on is "preparing for death." It sounds worse than it is. I'm writing about advance directives. It's all research based, so I've read many journal articles to support what I write. Incidentally, anyone who thinks lawyers write to make things unintelligible clearly haven't read medical journals!

How am I doing? I miss Jack as much today as I did the moment I walked out of Ryan House without him. There are still hard days and many hard moments. There are also good days and many good moments. The blanket of grief is ever present, but it's not as heavy today as it was a year ago. I'm learning to live life without Jack. I do best when I'm active. Hiking has been my lifeline. If things go according to plan, I will be able to cross hiking the North Rim of the Grand Canyon to the South Rim off my bucket list in the near future. With thousands of people vying for a limited number of backpacking permits, we can only hope we get one of the coveted permits. We should know within the next month.

I had surgery a week and a half ago to have my gallbladder removed. It's been bothering me for over a year and I decided to just get it out because I didn't want to risk having an emergent situation at the bottom of the Grand Canyon. The first few days after surgery when pain was an issue (I'm fine now), all I could think of was Jack and all the painful surgeries and procedures we put him through. There were many tears ... not for my pain, but for Jack's. I still struggle with focusing on the hard times and all the ways I feel like I failed Jack. It brings me to my knees every time. I can't seem to shift my focus to the good memories. I'm not sure when or if I'll ever get there.  

On that note, I think I've rambled on long enough. Consider yourself randomly updated.  

Until next time,

Inching Onward


  1. As usual I couldn't stop reading once I started and then wanted more when I finished. I had looked at this post several times during the day but I waited until I had time to savor every word. Your writing inspires me to think about my own life and struggles I have had in a much different view. I appreciate you more than you can ever know.

  2. Thanks Julia. It felt good to blog. I'm going to try and update the blog more often. It's a different kind of writing than my writing projects and it's what has sustained me through the years. I need to keep it up. Thank you for reading.