Thursday, June 26, 2014

Permission, Thank You and Signing Off

We are almost to the six month mark without my beautiful boy. I don't even know how I've survived this far in a semi-functioning state. If nothing else, the last fifteen years certainly prepared me to get up each day, put one foot in front of the other and keep on keeping on whether I want to or not. I guess I can do hard things, right?

Since Jack died, many people have shared with me their thoughts on where I should go from here, what I can do next and how I can share Jack's journey going forward. I love and appreciate the people who love and care for me. However, I decided early on that for at least the next year I'm giving myself permission to not have a plan. Permission to not try and make sense of this journey, of Jack's life or of Jack's death. I'm giving myself permission to grieve and be sad and unfocused and angry. You have to know that there is no one who places more demands on or who has higher expectations for me than me. But I'm cutting myself some slack because I just can't make sense of it all right now and I can't pretend everything is okay.

I started this blog almost eight years ago with the intention of keeping family and friends updated on Jack's spinal fusion surgery. After surgery, I continued to write and share Jack's journey and inevitably, my journey as Jack's mom.  Based on the connections I made through Jack's blog and the feedback from those who followed Jack's journey, I felt that I had something to offer. My experience as a seasoned parent of a child with complex medical needs helped some people. I appreciate that Jack and the Internet gave me that opportunity. I appreciate that people came to know and love Jack through this blog. But, Jack's journey is over. This blog was never about - or was never intended to be about, me. What made Jack's journey unique was Jack. I can assure you that there is nothing unique about my "journey" without Jack. One thing that has been made abundantly clear to me is that grief is universal, it's predictable and it's by the book. If you want to know how I'm doing, you can pick up any book on grief after the death of a loved one and you will know how I'm doing. I'm not unique. I'm by the book.

What I have learned over the last almost six months is that there is a threshold for how much of my story and my grief most people can bear to hear. I get it, I honestly do. I'm living the life that is every parent's worst nightmare. My child died. It's something many of my friends have contemplated, faced, and feared. I make it too real. I get it.

Which brings me to this: I'm giving myself permission to close out my writing on this blog. I really feel like there is nothing more I have to share. I miss Jack, I ache for Jack and I cry for Jack every single day. There are only so many ways I can say this. It will never change. I suppose that over time, my aching and crying may ebb, but my missing and grieving the loss of Jack will never end. I will never be the same person I was before Jack died. The grief of losing a child is inexplicably different than the grief that comes with being the parent of a child with special/health care needs.

I belong to a different club now. I went by the cemetery this evening on the way home from work. As I was sitting at Jack's grave, a woman came up to me and asked about Jack because she had noticed that he was young. I knew of her because I heard that she sits at her daughter's grave for hours every single day. I learned that her daughter was killed over two years ago in a car accident at the age of 20. I learned that her daughter attended the same high school as Hilary and Mary and was there the same time my girls were. I learned that years two and three post-death are harder than year one. I immediately connected with this woman and we talked for close to an hour because we belong to the same club. We are the mothers of children who died too soon.

I'm not going to stop writing, but moving forward, I will write privately and make decisions as time goes on as to what I want to do with what I've written over the last eight years and what I have yet to write. For those who are on Facebook, I will continue to share pictures and updates of our life without Jack. I'm not checking out - I'm just opting to be more private. I know I have in real life friends who aren't on Facebook and who follow this blog. For you, please feel free to email or call me anytime. I'm happy to share updates.

As I sign off, I tender a heartfelt "Thank You" to everyone who has followed Jack's journey. Your care, concern, support and love have unquestionably carried me through the most difficult times of my life. I love you and I appreciate you.

For the remainder of my days on this earth, I will miss my Jack, I will ache for my Jack and I will cry for my Jack. But, sustained by his spirit, I will continue to inch ONWARD.

ONWARD, my beautiful and amazing friends, ONWARD.

Friday, June 06, 2014

Heaven



When Jack was inpatient at Phoenix Children's Hospital those many weeks in August-September of 2012, someone brought me the book "Heaven is for Real" to read.  She said she pulled it off the shelf not knowing what my faith or beliefs were. It was exactly what I needed to read at the time. After reading that book, I searched out and read every book I could find about heaven. I read stories based on real life near death experiences and I read books based on a biblical foundation. Not surprisingly, I found the stories written by regular people who experienced near death experiences to be the most comforting.

Shortly after we transitioned Jack to palliative care and our focus shifted to less about intervention and more about comfort, I felt drawn to talk to Jack about heaven. There were so many times when I'd get up close to Jack's face, look into those soulful eyes and want to talk about heaven, but I couldn't get the words out. Talking to Jack about heaven meant that I had to acknowledge out loud that Jack was going to die. I didn't want him to think that I was ready for him to die or that I had given up on him.

Then, one day I was finally able to do it. I told Jack that there was this amazing place called heaven where he would be able to talk, and breathe without a machine. A place where he could run and jump and play. A place where there was no pain. I told him he didn't need to be afraid. The tears filled my eyes as I looked into Jack's eyes - those eyes that held more knowledge than I could begin to understand. I tell you in all honesty that no sooner had I uttered the word "heaven", then Jack's face lit up with a smile. Right then and there, I knew there was absolutely nothing I could tell Jack about heaven that he didn't already know. Right then and there, I knew with certainty that Jack was heaven sent and he knew exactly where he was going once he finished his earthly journey. From that point forward, I knew that no matter what, Jack was going to be okay. He knew it and I needed to believe it.

The tears that fall on a daily basis are not for Jack, they are for me. I miss Jack something fierce. Are there moments when I question whether there really is this place called heaven? Sure there are. But, then I close my eyes and picture that all-knowing smile Jack gave me when I talked to him about heaven, and I believe. I believe Jack is safely Home. He is Home and one day we will be together again. I believe it.

In the meantime, this pretty much sums it up ...


Homesick by MercyMe