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

Saturday, July 9, 2016

Hope Matters

I've secluded myself in a hotel room this weekend to work on writing stories for our book. Today I wrote one of my own stories. As I sit here reading it, it makes me cry. It makes me cry not only because of the importance of the message, but because I realize how incredibly fortunate we were to have some of the most amazing doctors care for Jack. They are not just amazing clinicians, they are amazing human beings. 

I really miss them. 

I want to share with you what I wrote today because, no matter the situation, hope matters.















I was sitting at my desk at work when my cell phone rang. I knew I had to answer it because my six-month old son, Jack, was in the Pediatric ICU (PICU) at our Children’s Hospital, where he had been for the last two months. The doctors didn’t know what was wrong with him or why he couldn’t wean off the hospital ventilator and breathe on his own. They were in the process of conducting a series of tests and, at the moment, he was stable, which made it possible for me to work a few hours each day.

I answered my phone fearful it might be a call from the hospital. On the line was the neurologist who was caring for Jack in the PICU. A week prior, a muscle biopsy was taken from Jack’s thigh to test for various known neuromuscular diseases. One of the diseases they were testing for was called Merosin Deficient Congenital Muscular Dystrophy (MDC1A). I was told up front by the neurologist that we did not want Jack to be positive for MDC1A because it was a devastating disease that would confine Jack to a wheelchair.

In a genuinely relieved voice, the neurologist told me that Jack did not have MDC1A. She was happy. I was happy. Although, I wasn’t convinced Jack had a muscle disease at all. He had a rough start to life – born seven weeks premature and then, when he was two months old, he had surgery to correct a congenital cardiac anomaly. He just needed time to grow and get stronger. The suggestion that he had a muscle disease wasn’t in my realm of possibilities.

After the neurologist shared the good news, I pushed her to give me answers I wanted to hear regarding Jack’s prognosis. Knowing now that Jack didn’t have MDC1A, I boldly said to her, “You can’t tell me that Jack won’t ever walk.”

This neurologist has years of experience specializing in neuromuscular diseases at one of the top medical institutions in the country. I suspect she had a good idea about Jack’s prognosis based on her evaluation of him, even if his specific disease was not yet identified. However, rather than tell me it was unlikely Jack would ever walk, she said to me, “I can tell you that I don’t have another patient exactly like Jack.” And she left it at that.

The impact of that simple statement was profound. What the neurologist gave me that day was hope. By not laying out all the possible negative scenarios for what Jack’s future might hold, she didn’t steal my hope that day.

Jack was ultimately diagnosed with a rare form of congenital muscular dystrophy when he was seven years old. Jack never walked. He never breathed on his own without the support of a ventilator and he never ate food by mouth. However, on that day I made my bold proclamation to the neurologist, had I been told that Jack would never walk, talk, eat or breathe on his own, I don’t know that I would have been able to get myself out of bed every day. By not taking away my hope, this doctor allowed me to believe that everything I did with Jack during his early years – trialing him off the ventilator, putting him in his stander, trying to get him to eat by mouth – were all worth the effort. She allowed me to accept Jack’s ultimate destiny in my own time and on my own terms. And in doing so, she allowed me to give Jack every possible chance to reach his full potential within his limitations.

The importance of hope cannot be overstated. Having hope does not mean having an unrealistic understanding of your child’s prognosis. We live the truth day in and day out. Parents are able to distinguish between hope and wishful thinking. Hope is what allows you to take a chance on the future. It’s what gave me, as the parent of a child with a devastating life-limiting disease, the strength to get up each day and “keep on keeping on.”

How information is conveyed by a physician can go a long way in preserving hope. By choosing words that didn’t steal my hope when Jack was six months old, Jack’s neurologist was instrumental in ensuring that Jack had the best quality of life for the fifteen years that he lived.


Hope matters.

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



Wednesday, January 6, 2016

Postscript

Yesterday the rain fell continuously for most of the day. Then around 4pm there was a break in the rain, so I went for a long solitary walk along the beach. At one point, I looked up and saw this:





A hole in the sky. 

Jack is most certainly looking down on me. 

All is well.

Onward. 

Tuesday, January 5, 2016

Two Years


Two years. It's incomprehensible that it's been two years since I held my sweet boy in my arms as he took his last breath on this earth. Mark and I both feel that the more time that passes, the further away from Jack we feel. And that is hard. People will say to me that Jack isn't gone, he's still in my heart. But the reality is, I don't feel Jack in my heart. I just feel a huge emptiness. I think part of why there is such emptiness is because I don't have memories of things Jack did or things he said that I can recall to bring me joy. My memories are all just my best guess of what Jack was thinking, feeling, and "saying." I don't really know what Jack thought of me, his life circumstances or the decisions we made for him. The further out I get from having the reassurance of those soulful eyes, the more doubt creeps in. It will be my lifetime struggle to keep the doubt at bay. 

I still cry every time I think of Jack, and I think of Jack every day. I mostly think of Jack when I look up at the sky. The clouds and limitlessness of the sky make me think of heaven and I wonder what it's like, how it feels and what the Jack on the other side looks like. I know he is with God and the one thing I can say with certainty is that as much as I miss him, I don't ever wish him back here. The tears that fall are for me and my loss. When I shift my focus from myself to Jack, the tears quickly dry because I truly find peace in knowing that Jack is in the most amazing place, he is healed and he is infinitely happy.

Despite the feelings of distance and emptiness, I do talk to Jack. I tell him I miss him. Every so often, I'll ask him to send me a sign, something to let me know that he hears me. For the most part, he ignores me, but every once in a while he comes through. Or at least I'd like to believe that he heard me. I do a lot of thinking and reflecting on my forty minute drive to and from the office. I work in a somewhat rural community and the view along my commute consists of open desert surrounded by mountains and a wide open sky. About a month ago, as I was driving into work it was an unusually cloudy morning with the sun's rays shining through the openings in the clouds. As I looked up at the sky, I pleaded with Jack to send me a sign. I really needed one heading into the difficult holiday season. Shortly after I got into the office, an email came across my phone from my friend Angie, who was also one of Jack's nurses that cared for him one day a week for several years. Angie moved to Minnesota shortly before Jack died, but she always had a very strong connection to Jack and was one of the few people who really got him and treated him like a typical kid. In her email, Angie sent me a link to a NPR story that was part of NPR's series called "StoryCorps" - a program that allows people to record, share and preserve stories about their lives. The story Angie linked was from a woman sharing memories of her grandmother. As I listened to the story, the author shared these words:

"She used to tell me that the sky was black velvet and the stars were holes that had been punched in the ceiling of heaven. And that was how our loved ones looked down at us and saw if we were doing wrong, or if we were doing right, or just check in on us every so often. So every time I look up at the sky, she's there."

Angie's email to me said "Listen to this story. I thought of Jack looking down at you through the holes in the fabric sky."

I sat there at my desk and cried. Jack gave me my sign. He assured me that, yes, every time I look up at the sky he's there, looking down on me. 

Two years. I love him and I miss him, but I know I'll see him again. In the meantime, I'll continue to look up and know he's there and he hears me. 

Onward my friends. 

Wednesday, November 4, 2015

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.  


Sunday, August 16, 2015

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 a complete stranger not knowing what they are going to do with your precious boy. 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.


Sunday, July 5, 2015

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.