God knows I need to be still.
God knows my heart must be so filled
that I won't curse the dark, but that I will embark
on the journey of living again.
So listen, my angel, come.
Help me up, help me walk, help me run.
If you're here by my side, joy will rise
and I'll feel like I am living again.
(from "I Know Where You've Gone" by David Kauffman)
The words quoted above are from a song my friend Jenny shared with me last summer. The song is powerful, spot on and incredibly moving. I sobbed the first time I listened to it. Now, months later, the song resonates with me even more as I embark on the journey of living again.
As I shared in my last post, after having made it through the year of "firsts", I feel like the black cloud that hovered over me and weighed me down all of last year has shifted away ever so slightly. The tears still fall every day, I still go by the cemetery almost every day, and I still miss my boy something fierce. But on the other hand, I feel "lighter", I have more energy and I have the strength to do more than just get out of bed and get through each day.
As I re-enter the world of living again, I'm excited and humbled by the opportunities that have come my way. Opportunities that will keep me busy, allow service to others and that honor and remember Jack.
Willow Tree Foundation
Last Fall, The Willow Tree Foundation received its very first grant from an organization called Mother's Grace. It's always been my hope that through The Willow Tree Foundation I could bring parents of medically fragile children (more commonly known today as parents of children with special health care needs) together. So many of us are members of online support groups - which are great, but I know from my experience with my trach (tracheostomy.com) moms, that in-person connections create bonds and meet needs that Internet connections cannot. With the Mother's Grace grant funds, The Willow Tree Foundation is holding its first Mom's Day Retreat in a few weeks. I'm hoping the day retreat will be a springboard for more regular group events where parents can gather for moments of calm and fellowship. I now have the time I didn't have when Jack was alive to devote to my foundation - an organization I founded over ten years ago. It's been said that The Willow Tree Foundation is the best kept secret in town. I hope to change that in this coming year as I spread my wings and reach out to more parents and more referral sources. Anyone looking for a great non-profit to support, The Willow Tree Foundation is always in need of your financial support.
Cure CMD Family Conference - June 26-28, 2015
Two years ago, I attended the Cure CMD Family Conference that was held at the National Institutes of Health in Bethesda, MD. It was a great opportunity to hear from the best in the field of CMD (congenital muscular dystrophy) and to meet other parents. All of the past family conferences have been held on the East coast. This year the conference is moving West - to Arizona. I offered to help with the planning and I get the sense I may have gotten myself in for more than I anticipated, but it's all good. We are still soliciting sponsors and working on the agenda. But without question, the best of the best when it comes to CMD research and management will be in attendance. I've even been talked into co-presenting on the importance of self-care for caregivers. I keep telling myself that I'm not a public speaker, yet I keep finding myself in public speaking roles. Totally out of my comfort zone, but totally a "Jack-thing". He pushed me out of my comfort zone the day he was born, so why stop now, eh?
The Book
Probably the most exciting thing for me in this coming year (and years to come) is a book that I'm co-writing with one of Jack's former doctors - a both sides of the story kind of book. A parent's perspective versus a physician's perspective in caring for a chronically/critically ill child. I've always felt like there is a book in me that needs to be written, but I've never felt that a memoir-type book is what I'm supposed to write. When this book idea was shared with me, it was an unequivocal YES, I want to do this. It's an opportunity to both teach and learn and I can think of no greater legacy for Jack. The book will not just be about my own personal parent/physician experiences. I'm also reaching out to other parents who are willing to share their stories.
As I prepare myself to sit down and write (really write), I have taken the monumental step of transforming Jack's room into my writing space. The hardest thing we had to do was give away Jack's bed. Oh.my.heart. I bought a writing desk, some new furniture and have toned down the jungle-theme of Jack's room just a bit. But there's still a lot of Jack left in the room, not the least of which are the many memories made in our favorite gathering place. I haven't yet finished with the room makeover, but I'll be sure and share pictures once the process is completed.
I'm doing my best to be Jack's legacy, to be Jack's voice and to allow Jack to live on in me. I'm fortunate that I didn't have to make the choice to learn to live again all on my own. Others reached out to me and encouraged me to participate in life again - in the most remarkable of ways. And I think I just might be able to do this.
Inching Onward by the grace of God and the love and support of so many.
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If you want to hear the song that the words I shared above came from, here you go. But be forewarned, you will cry, especially if you are the parent who has lost a child and who believes in God and heaven. It's a beautifully moving song.
