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

Sunday, August 6, 2017

Grief (Three Years Later)

Three years ago, my grief felt like this.   

Today, my grief is tempered. It doesn't feel as desperate or insurmountable. I no longer wake up each day wanting to die so that I can be with Jack. I now wake up every day and think to myself, "Today is another opportunity to give it my best shot. Another opportunity to be a reflection of all Jack was and all he taught me". Most days I fall short, but every new day that I'm given is another day to try and get it right. 

I recently had lunch with a friend who I hadn't seen in a couple of years. She asked me what I thought about Jack dying. (This friend is an emergency department physician who has seen more than her fair share of death. She is also the parent of a child with a congenital muscular dystrophy.) I thought about it briefly and then answered, pragmatically, "Jack was always going to die." It shouldn't be news to any of us that we are all going to die. Jack dying wasn't something that wasn't going to happen. I just wasn't chosen to be one of the fortunate parents who gets to live long enough to see their child grow up and then gets to die before their child dies.

I can now see and accept that Jack's earthly journey was perfectly born and perfectly completed. He earned the right to lay down his sword and rest. When the guilt starts to creep in and the "what ifs" surface, I take a deep breath and remind myself that none of us gets to live forever. I also remind myself that I'm not and never was in control. 

This is not to say that I don't miss Jack. I desperately miss Jack and I'm certain I always will. There are some who say Jack is not gone, he's still with me. He's in my heart and in the signs I receive. And while that may be true, there are many days when that's just not enough. I miss his physical presence tremendously. I miss looking into those soulful eyes. I miss running my fingers through his awesome head of hair. I miss holding his soft hand and wrapping my fingers around his strong and crooked fingers. I miss making him laugh. I miss his smile. I will always mourn the loss of Jack's physical presence.

I still cry almost every day when I think of Jack. I have Jack's picture on my phone and every time I look at his beautiful face, I get tears in my eyes. But as my good friend tells me, tears are holy water. They heal, they restore, they give strength. I hope I never stop crying when I think of Jack.

Today, I welcome life, but I do not fear death. I survive on the hope of heaven. The belief that one day I will see Jack again. I pray every day, "please God, let heaven be for real because I absolutely have to see my sweet boy again." I need the hope of heaven more than I need earthly signs and I hold on to that hope with every ounce of my being.

Today, I still grieve. But I find joy, and light, and love in life too.

Today, I hope Onward!

Saturday, April 15, 2017

I Loved Him Home

Last weekend I attended a retreat for mothers whose children have died from congenital heart disease and other chronic illnesses. I didn't search out this retreat, you could say it found me and I said "Yes". The Restoring a Mother's Heart retreat is put on by the Ethan M. Lindberg Foundation, a foundation established by Jessica and Erik Lindberg to honor the life of their son, Ethan. Ethan was born with congenital heart disease and he died on June 12, 2012 at the age of seven. Jessica and Erik have four sons. Ethan is their oldest son. Last December, Jessica contacted me via Facebook to share with me that she had read my blog and was touched by Jack's story and understood the grief of living with the death of a child. Jessica also shared with me that her youngest son, Bodey, who is two years old, was born with a Congenital Muscular Dystrophy. I never asked Jessica how she found Jack's blog, but I'm guessing it was from the Cure CMD website. After Jessica and I connected via Facebook, I discovered the link to her Foundation and read every page on the website. I clicked on the tab titled "Retreat" and found these words:

During our time together we will encourage you to cultivate your infinite relationship with your child. We will ask our hearts' deep questions and share practical tools to navigate this journey. This retreat is an invitation to continue your infinite relationship with your child. As a participant, you will be reminded that your story, while painful, is certainly not over. And in fact, it has great purpose. Come share, learn, care for yourself and feel the support of a community of women who understand. 

As soon as I read those words, my heart said "you need to do this."  

The weekend was spent in the presence of beautiful mothers from all across the country. We shared our children with each other, we laughed, we cried, we meditated, we listened, we reflected, and we ate (a lot!) We were students and we were teachers. I came away from the weekend feeling validated and honored. I also came away with work to do. One of the messages that resounded with me is that while Jack's story may be over, mine is not. Three years after Jack's death and I still struggle with "who am I and what am I supposed to do with the rest of my life?" That's where I need to put in my work. I need to find and focus on my purpose and that's not easy when it doesn't include Jack - at least not in the way it included Jack for the 15 years of our lives together. 

The speakers were all incredible and spoke from experience and with love. One of the speakers was Tom Zuba. Shortly after Jack died, I bought Tom's book Permission to Mourn. A New Way to Do Grief. When I first read it, I had a hard time connecting to his words. When I found out that Tom was speaking at the retreat, I pulled out the book and read it again. The second time around, so much of what Tom wrote resonated with me. I was in a much different place three months after Jack died than I am now - three years later. Tom has experienced incredible loss in his life and he knows of what he speaks. It was a privilege to listen and learn from him.

On the second day of the retreat, one of the sessions lead by Tom dealt with God (or Spirit or Light or whatever you may believe) and how He was present (or not) when our child died. The answers to this question were as varied as the experiences we each had surrounding our child's death. I came away from this session with my most profound takeaway from the retreat.

When I think back over Jack's life, I don't think there was ever a time I was angry with God. In those first few months of Jack's life, I prayed fervently that Jack would be strong enough to get off the ventilator. When my prayers weren't answered, I wasn't angry, I was resigned. By the time Jack was born, I was well beyond Plan B for my life, so it wasn't a big surprise that I didn't get what I prayed for. I wasn't happy about the hand that Jack and I (and our family) had been dealt, but it never rose to the level of being angry with God. Instead, for the majority of Jack's life I decided that I'd just "take it from here" since God clearly wasn't going to help out (how very wrong I was in this belief!) I was under the illusion that I was in control and that I'd just have to get Jack walking, talking, eating and breathing without the ventilator all on my own. This illusion of control most certainly preserved my sanity. Then in 2012 Jack began suffering from kidney stones and the downward spiral began. I still had my "I'm in control" hat on as I navigated Jack's care and talked with doctors in St. Louis, doctors in Phoenix, former doctors, current doctors and made sure that Jack had the best care possible. But it wasn't enough. Jack continued to suffer and I couldn't stop it. I reached the point where I literally fell to my knees begging God for guidance and to release Jack from his pain. I never felt compelled to ask God to "fix" Jack because I knew it wasn't possible. Jack was born with a devastating neuromuscular disease, he wasn't going to get better. I needed God's guidance as Mark and I made the most difficult decisions any parents should have to make for their child. I believe that those difficult decisions were God-driven decisions. Jack was suffering and when he died I felt with all my heart that God was with us every step of the way

When I shared my thoughts on this question as it pertained to my experiences with Jack, I heard the words "you loved him home." Those words touched me to my core. Yes, with God's grace and guidance, I did love Jack Home. Three years after Jack died, I finally heard the words that give me peace. I didn't choose to let Jack die; I chose to LOVE HIM HOME. 

Thank you Jessica. Thank you Tom, Lexi and Sara. And thank you to each and every brave mother who had the courage to show up and share her heart, her words, her pain and her love. Our stories are not over. Indeed, they are not.


Thursday, March 2, 2017



I use that word a lot. I had a friend tell me that he doesn't like that word. He doesn't want to push onward, he wants to stay in the present and feel deeply and fully the emotions of the moment. To me, "onward" doesn't mean to not be in the present or to move on or to get over it. Rather, it means to Get.Up. and Put.One.Foot.In.Front.Of.The.Other. If I didn't encourage myself to push onward, I don't think I'd ever get out of bed.

I know that you never get over or move on from the grief of losing a child (or anyone you love deeply, for that matter). But lately I feel like I'm spending so much of my time looking back instead of looking to the future. This fourth year without Jack has been a particularly tough year so far - it seems more difficult than last year was. I've been going back and reviewing the last years of Jack's life - the difficult years. (The history detailed in Jack's blog is both a blessing and a curse.) I haven't felt much like marching onward.

If you follow me on Facebook you know that almost everything I post has to do with Jack. I share pictures of the good years, the good memories, the happy Jack. It's as if I'm trying to remind myself that, yes, there were good years. Why is it that I can only focus on the hard stuff and question everything I did and didn't do instead of focusing on the good stuff? I guess because my child died. Because when your child dies you can't help but wonder what you did wrong or could have done differently. Because when you spend fifteen years giving every fiber of your mind, body and soul to keep your child alive, he's not supposed to die.

I think the obvious reason I spend so much time in the past is because that's where Jack is. Old pictures and memories are all I have of him. You have no idea how much I wish I could share current pictures of Jack. I know he's still with me - he's in my heart and his spirit drives me in everything I do each and every day. But sometimes that's not enough. I ache to touch him and look into those beautiful, soulful eyes. And because I can't touch him, I have to settle with seeing him in pictures. In the past. It's all I've got.

For all of you who continue to share Jack with me, who enjoy looking back with me and who continue to let me know how much he touched you and how much you miss him - I cannot thank you enough. You truly give me the strength to continue to Get.Up. and Put.One.Foot.In.Front.Of.The.Other.

There are times I wish that "onward" did mean moving on and getting over it. I'd love to stop hurting. But that's not the case and never will be the case. I will never get over, move on or stop hurting from the loss of Jack.

But with the love and support of friends, and by the grace of God and the hope of heaven . . .

Onward it is.