The Journey of Living Again

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.

_________________________________________

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.

One Year

January 5, 2015.

One year. One year since I last held my sweet boy in my arms. Three Hundred Sixty Five Days since I last looked into those beautiful, soulful eyes. This last year has been the hardest - and the darkest - year of my life. While there were many tough years during Jack's lifetime, I always had Jack to give me the strength and the light to carry me through. When Jack died, the light went out and I didn't have the strength or even the desire to find my way out of the darkness. It's called grief. I've always been someone who tackles life's challenges head on and just deals with them. But grief is not amenable to being dealt with or fixed - it must simply be endured. This last year I gave myself permission to not be strong, not be focused and not have a plan. I allowed myself to just "be" and feel and grieve. I have now survived the year of "firsts" without Jack and having made it through this last year, I feel a sense of relief. I approach this next year with an attitude of hope. I'm hopeful that this next year will bring a little more light and a lot less darkness. I'm hopeful that I can find joy and purpose in my life again. There is a tremendous amount of guilt that comes with choosing to find joy in a life without your child. But I didn't get to die with Jack, so I have no choice but to carry on. I have to make peace with a life where grief will always coexist with joy. I pray for the strength to be Jack's legacy, to be Jack's voice and to honor Jack's life by living again. 

I knew that I had to get out of town for the first anniversary of Jack's death. The place that brings me the most peace is the ocean. So we rented a condo and spent seven days together as a family on Coronado Island. We saw seven beautiful sunsets. We went to bed early, we woke up late, we biked around the island and we enjoyed stress-free time together as a family. It was amazing and restorative. 

I was prepared for January 5th to be a day of great sadness and grief. But it turned out to be quite the opposite. Mark, Mary and I got up early and biked down to the beach where we walked along the shore for several hours, each lost in our own thoughts. We then went back and got Hilary and Eric (who were glued to their electronics) and made them come to the beach with us. We spent the afternoon looking for sea shells and sand dollars, we played frisbee, we laughed and we enjoyed each other's company. I wanted to be sad, I thought I was supposed to be sad, but it was hard to find sadness on a beautiful, warm sunny day at the beach watching my kids have fun together. I can't tell you the last time (if ever) that I saw my kids have fun together. We had several things planned to remember and honor Jack. One of the things we did was decorate a rock and write on it something that was meaningful to us - whether it had to do with Jack or just with ourselves and then at sunset we tossed our rocks into the ocean. After that we had a private bonfire and s'mores party courtesy of the Hotel Del Coronado. We roasted marshmallows and raised our glasses to Jack. Some of us raised a glass of Irish Whiskey and some of us raised a glass of grape cider! We ended the evening by writing on prayer papers that a friend of mine sent me several months ago. The idea was to write on the paper, light it and watch it float away. The floating away part didn't quite happen like it was supposed to, but the symbolism was there. It was a full day and we came home tired and content.

Only after everyone was in bed and the quiet and darkness fell, did my tears fall. I miss Jack so much and I always will. But I know with all my heart that he is okay. Jack IS okay. I find that my tears fall the most when I pray. I think it's because God has Jack and I don't. But the knowledge that Jack is healed and in God's presence is what will sustain me the rest of my days on this earth. 

I look forward to the day I get to see my sweet boy again. But in the meantime, 

Onward it is.

_________________________________________

Pictures from our week away

About an hour into our drive to California, a rain storm rolled across the desert and we were graced with this image. A Jack-wink? I'd like to think so.

beach sunset our first night 

The kids playing frisbee on the beach

each of our stones

throwing our stones into the ocean

S'mores on the beach

A toast to our sweet Jack

A sandcastle on the beach. The words and the date captured our sentiments exactly

another beautiful sunset

relaxing and taking in the view

mom and Mary selfie

Give Sorrow Words

Give sorrow words, the grief that does not speak whispers the o'er fraught heart and bids it break. 

-William Shakespeare

The quote above was shared with me by a mom who lives in South Africa, who follows my blog and who has also lost a child.  It is those words that compelled me to keep writing after Jack died. I felt like I needed to continue to write because to silence my grief would most certainly cause my heart to break. 

But the reality is, my heart is broken. Period. Regardless of whether I write or not. And lately, I haven't felt much like writing. I've done a considerable amount of reading about loss and grief over the last several months. Much of what I've read has been helpful and comforting, however, I've also discovered that much of what is written on the subject is an attempt to get others to understand the grief of losing a child. And the fact is, no one can ever truly understand who hasn't lost a child. I believe it's impossible for a parent's mind to even conceive of the pain of losing a child because the pain is incomprehensible. Therefore, it's not even in the realm of possibilities for others to understand our loss. I was holding Jack in my arms after his heart stopped beating and I still didn't comprehend that he was gone. It simply wasn't conceivable in that moment. 

I'm not suggesting that people shouldn't write about their grief or that people shouldn't try and understand as best they can. But, for me, I'm becoming weary of reading about grief and I don't feel that documenting my grief is the direction my writing is supposed to take. Yes, I still need to deal with, work through and talk about my grief. If I've heard it once, I've heard it a hundred times - grief is a process. You can't shut it down or put it on hold. You must allow yourself to experience it to survive it. And experiencing grief, I am. Profoundly and intensely. 

So, what exactly is the point of this post? I suppose, in part, to offer an explanation to those who follow the blog as to why my writings have been few and far between and why they will likely continue to be few and far between. That being said, I'm not finished writing. I started writing on this public forum over eight years ago because of a beautiful little boy named Jack. I shared not only Jack's journey, but also the many life lessons that little boy taught me as we journeyed fifteen remarkable years together. I believe it's what Jack taught me (and so many others) that needs to be shared. 

I pray daily for guidance and clarity and the strength to "switch from the fixing, fully understanding, and controlling mode to the trusting, listening, and allowing mode."  During this time of allowing myself to simply "be" and to trust and listen, I was recently asked about collaborating on a book by one of Jack's former doctors. This book idea is in the very preliminary stages - as in, it's just an idea at this point. But we plan to meet after the first of the year to discuss the details and I'm excited about the prospect. I'm trusting that I've been given the clarity and direction I prayed for. Stay tuned.

Rather than give my sorrow words, I'd prefer instead to give words to the wisdom and lessons of Jack's life.

Onward it is. 

Jack's 16th Birthday

Yesterday was Jack's 16th birthday. Here are pictures of how we celebrated this special, yet difficult day.

Birthday balloons

We hiked the same trail we hiked in January for Jack's memorial hike

and we released 16 butterflies in honor of Jack's 16th birthday

this butterfly hung around for awhile before he flew away 

A birthday cake to celebrate the 16th year of my beautiful boy's birth

Good night sweet prince. We miss you and love you always 

For Everything There Is A Season

For everything there is a season,

and a time for every matter under heaven.

A time to be born and a time to die. 

How This Feels

Willow tree sighting sent by my friend Karen from somewhere near Seattle

Last week while we were sitting at Eric's swim meet, Mark said to me "I can't do this anymore." I asked him if he meant he couldn't sit through another swim meet anymore and he said, "No, I can't live without Jack anymore."

That's how this feels. 

Every day you wake up wishing you could die. Not because you don't want to live, but because you are so desperate to see your child again. As another grieving mom stated so perfectly:

"I have the hope of heaven, and like many bereaved moms, I operate with one foot here and one foot there. Death holds no sting or fear for me at all anymore."

I have three other children to love and care for, so I have to keep living because I need to be here for them. I also know that the gift of Jack didn't end with Jack and I believe there is something more I'm supposed to do with the lessons and the love that Jack gave me. Yet, the torment of wanting so desperately to be with Jack while recognizing that my work here is not finished can be unbearable at times. 

That's how this feels. 

I've been able to talk with other moms who have lost children and what I'm learning is that there is no right way, no wrong way and no easy way through this. There is no survival guide. There is only our own unique way to press on, to get up each day and put one foot in front of the other. There's no moving on, no getting over it, no putting this behind you. There's only living through it. You can't think too far ahead because imaging another twenty or thirty years without Jack is inconceivable. My biggest fear is that people will forget Jack. And the reality is, people will forget Jack. Five years from now, it's possible I will have friends who won't know me as Jack's mom, who will have never known Jack. When I imagine a time when people won't remember or know Jack, it takes my breath away, literally.

That's how this feels.

What saves me in this moment is that I can talk about Jack and about my grief and there are people who will listen. It also helps to write. I don't know who all is reading, but I'm going to believe that despite how repetitive and uninspiring my writing is these days, there are people who are reading and listening. It's what gives me the strength to carry on. That, and the hope of heaven.

The four most important words you can say to a grieving parent are "How are you doing?" and then be willing to simply listen to the raw truth about how this feels.

Inching Onward by the grace of those who ask and then listen.

Jack-Winks

To say the last nine months have been tough is an understatement. Some days I wonder if I'm going to survive this. But consistently, on those days when life feels the most unbearable, at just the right moment, I'll receive a text from a friend letting me know they are thinking of me. Other times, a picture of a willow tree shows up on Facebook or my phone with the note "made me think of you and Jack". The notes, pictures and reminders of Jack - what I like to call "Jack-Winks", are without question what have carried me through this last year. Thank you for sharing your Jack-Winks and please keep them coming. I'm really going to need a lot of Jack-Winks to carry me through the upcoming months that include Jack's birthday, the holidays and the first anniversary of Jack's death. 

Here are some of the Jack-Winks that have been shared with me over this last year:

South Dakota willow tree from my friend Katie.

(beautiful picture!)

Austin, Texas willow tree from my friend Barb.

Atlanta, Georgia - shared by my friend Erica.

Sedona cairn - from Erica

My friend Jean traveled to Spain to walk the Camino de Santiago. 

She placed Jack's stone along the Camino.

Jean shared this willow tree - Astorga, Spain.

Willow tree and my friend Ben at Eckerts Apple Orchard in Illinois (I think).

On a day when I was having a rough morning at work and had just walked out of the office because I couldn't get the tears under control, a text message came across my phone with this picture and the message "thinking of you and Jack" from my friend Ali in St. Louis. When I told her that her timing was perfect, she responded with "I believe I was prompted by an angel."  A definite Jack-Wink!

From the campus of Washington University Medical School/St. Louis Children's Hospital - my friend Jenny sent me this picture and asked, "Is this Jack's tree?" Yes, this is unofficially Jack's Tree at Wash U/SLCH!

Connecticut willow tree - thanks Christina!

Bethesda, Maryland "Jack banner" from my friend Diane. 

Inching Onward with the help of all the shared Jack-Winks. xo