17 Years

Happy 17th Birthday to my sweet Jack. His beautiful spirit continues to inspire me, give me hope and courage and guide me as I inch Onward in his absence. I love him and miss him with every breath I take.  

Strong

One month ago I joined a gym. That in and of itself is not a big deal. But for me, it was a monumental step forward in this grief journey. It was a decision based on my acknowledgment that while Jack is no longer here on this earth, I am and it's very possible that I might be here for awhile yet so I need to take care of me. I'm a different kind of tired these days. I'm tired of the relentless looking back and agonizing over everything I did or didn't do and everything the medical professionals did or didn't do. I'm tired of the guilt, the "if onlys", and of being stuck in the hell of Jack's last two years. There are no do-overs. I can't change what is. I believe with all my heart that Jack really is okay. He has moved on to a most amazing place and I know we will be reunited some day. Although I will always miss him; I will always ache for his presence; and the tears will continue to fall, I need to be willing to imagine a future without Jack that involves more than just getting through each day. I need to be willing to find purpose and joy in life again. I've reached the point where I am willing.

There were many times during Jack's life that I was told I am strong. Yet, I never felt strong because it wasn't strength that carried me through the fifteen years of Jack's life. It was Love. It wasn't strength that held me up during those many months sitting by Jack's bedside in the Pediatric Intensive Care Unit, or that allowed me to sign consent form after consent form giving doctors permission to cut on Jack time and time again. It wasn't strength that carried me through countless sleepless nights of suctioning, treatments, bagging, alarms and worry. It wasn't strength that traveled with us 1500 miles cross country year after year to give Jack the best medical care possible. It wasn't strength that allowed me to say enough and give Jack permission to go Home. It was Love. Love that transcended words and was given unconditionally through those beautiful, soulful eyes.

What takes strength is handing your child's body over to the mortuary people knowing you will never see or touch your precious boy again. It takes strength to plan your child's funeral and watch his physical remains be lowered into the ground. It takes strength to open the envelope that contains your child's death certificate. It takes strength to get up every day and go to a job that feels meaningless in the face of such overwhelming loss. It takes strength to keep your heart open to the pain and hardships of other parents who are still in the trenches. It takes strength to smile, laugh and find moments of joy in life. It takes extraordinary strength to choose to live a life of joy after the death of your child.

So today, I admit that I feel strong. It has taken superhuman strength to get through the last nineteen months without Jack. But I've done it. And I'm still standing. While I no longer have those loving eyes to carry me through, I have the love and grace of God and the unending love and support of amazing friends and family.

Today I feel strong. And I'm willing to imagine a life of purpose and joy in the absence of my sweet boy.

Onward.

1.5 Years

It's been 1.5 years; 18 months; 546 days; 13,104 hours, et al. without him. But who's counting. Fact is, I'm counting. I've moved beyond counting the hours and the days, but I'm still counting the months. My social worker reminds me that my grief journey is still very new. She gives me permission to be hyper-focused on the passage of time. Actually, my grief journey isn't new, it began over 16 years ago. Nevertheless, this grief journey is new and I appreciate more than she'll ever understand the support of this person who validates my extreme mood swings as I trudge through this interminable grief journey. 

Some may perceive the picture above as a sad picture. I do not. I have this picture on my desk at work as a reminder of the gift it represents. As Jack's mom, I had the privilege of not only ushering my beautiful boy into this world, but also the extraordinary privilege of holding him securely in my arms as he was ushered out of this world. Would I have preferred to not have had to experience the latter privilege at all? Of course. But Jack wasn't born with the gift of health and it was not his destiny to live out a long life. When I think of all the possible scenarios that could have played out on Jack's last day, I could not have orchestrated a more perfect passing than that depicted in the above picture. And that picture might not have happened but for a telephone conversation I had earlier that day with Jack's neurologist. When I called her to let her know what was going on with Jack and where we thought things were heading, I will never forget her voice cracking as she commanded "You make sure you hold your boy".  What a gift those words were because in the moments of Jack's final hour it was all very surreal and I wasn't in any frame of mind to think clearly about what was unfolding. When they moved Jack's bed to the Sanctuary room, the only thing that was clear were the words "hold your boy".  And I did. And I will be forever grateful for Jack's neurologist and for my niece who captured this moment unbeknownst to me at the time. 

Last week at work, I was going through my archived emails and happened upon an email that was sent to me in 2010 by one of the Ryan House staff. She told me that they were beginning the process of collecting stories about their experiences with families so that twenty years down the road, they can share their journey. Here is part of what she wrote about Jack:

When I first met this wonderful 11 year old, I wondered what he thought of coming to Ryan House. Would he be as comfortable as he is at home?  Would he like to try new things?  How could we make this the first of many great weekends together? While he is unable to tell us verbally what is on his mind, it is clear his eyes tell us all.  I first learned this while sitting with him, examining the laser stars we had projected on the walls.  As I pointed to various ones around the room, he watched and looked at me as if to agree they were creating a magical place just for him.  I recall the night nurse telling me that he got such a kick out of her Spongebob impersonations...who knew she could sound like Spongebob?  

While out and about in his wheelchair the next day, enjoying the sunshine and the playground, we soon found out that one of his favorite things is to be read to...and not just by anyone...but by our volunteer Beverly.  Something clicked between those two. It wasn't long before she was reading to him for hours, gliding up and down the halls together, and most of all dancing with him in the music room.  She turned the player piano on, gently took hold of his hands, and began swaying and twirling away.  His eyes were just fixed on her, and there was a gentle smile that could not be denied.  

I don't know if Jack's story is still among the archives of the Ryan House stories, but I do know that this was something I needed to read. I needed to read words written about Jack at a time when he was still here with us. I needed to hear how Jack touched lives and made a difference. I miss him more with each passing day, but I find some comfort in knowing that "We can be. Be and be better" because he existed.

I miss him. I ache for him. I cry for him. Always.

Onward it is.

Enduring Ties

One of the many special spaces at Ryan House is the Memorial Garden. It is a secluded and quiet place you enter (appropriately) through the Sanctuary Room. Along the walls of the Memorial Garden are beautiful hand-painted ceramic tiles, each uniquely decorated tile chosen by the family holds the name of their child who has passed away at Ryan House. For much of the last year I have been pestering everyone I know at Ryan House asking when Jack’s tile would be placed. The date was pushed up several times and with every delay, I felt both a sense of disappointment and urgency.

Last weekend, Jack's tile and the tiles of other children who have passed away in 2014 were finally placed. I went by Ryan House today to see Jack's tile. When I walked into the garden, Kasia, one of the CNAs who has been with Ryan House from the very beginning and who knows Jack well, was out there sitting with one of the children she was caring for. She smiled and gave me a warm embrace. She told me that she has been thinking a lot about Jack and showed me where his tile was on the wall. Compared to most of the tiles, Jack's is fairly plain - a simple white dove with a colored ribbon around its neck. But its simplicity makes it stand out among the more colorful tiles. I think it's beautiful and I feel a sense of peace knowing that it's finally up on the wall. Kasia shared with me that she spends a lot of time in the garden and when she's there she never feels sad, rather she feels the presence of all the children who have passed on and memories of them make her happy. It warms my heart to know that she remembers Jack and thinks about him when she's in the garden.

I’ve thought a lot about why it's so important for me to have a tile with Jack's name placed on the Memorial Garden wall. Ryan House's philosophy has always been “once a Ryan House family, always a Ryan House family”, so I know that I'm always welcome at Ryan House even though Jack no longer spends time there. I still stop by Ryan House every so often, usually when I have a friend in from out of town who I want to share Ryan House with. But since Jack died, there have been changes in staff and most of the people who are there now don't know Jack or me. I think that's why having Jack's name in the Memorial Garden means so much to me - it seals our connection with Ryan House. There's something very sacred about the place where your child died and that simple ceramic tile inscribed with Jack's name creates an enduring tie with Ryan House that can never be broken. No matter how many years pass, and regardless of whether there is anyone working there that I know, I will always have the right to enter the doors of Ryan House, walk down the hall, enter the Sanctuary Room (the room where Jack died) and pass through the door to the Memorial Garden where Jack is remembered by a beautiful white dove dancing on the wall. That permanent connection with Ryan House is something I need.

Kasia told me that next time I visit I should try and come by in the late afternoon, between 4 and 5pm, because a white dove regularly shows up and perches itself on the fountain located in the center of the garden around that time.

A white dove.

My heart.

Jack's Room

I started the process of changing Jack's room from a place where Jack lived to a place where I could write. It sounded good in theory. In reality, not so much. Despite the furniture change, the added "Willow Tree" touches and an abundance of Jack's things - the room is too quiet and too empty. It's still Jack's room and it's still very much missing Jack. I was so hopeful. But I'm not convinced it will ever be a place where I can hang out and write. I'm not sorry I made the changes because, if nothing else, the changes temper the "gut punch" we get every time we walk into the house from the garage and see into Jack's room. 

For now, I have to find a place to write. I think I will be spending a lot of weekends "off site" as I work on my book. Many thanks to the parents who've already sent me their preliminary stories. I'm looking forward to receiving more stories from other parents I've reached out to. (If you are interested in participating in the book, please contact me.) I feel strongly that this book is meant to be. Some day I'll share with you how the book idea came to be and why I feel so strongly about it. It's going to take a village to make this book happen - so thank you to everyone who is on board with me.

Despite its emptiness, I'm happy with the changes to Jack's room. I had someone paint a willow tree scene on one of Jack's walls. I think it looks great, but I see that I'm going to have to paint the other walls in the room because they don't go with the new look. I'll get around to it in time. For now, I've made all the changes my heart can handle. 

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I found willow tree branches to replace the leaves that were originally on the tree

(the light is always on)

Onward. 

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.

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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