Sunday, November 02, 2014
Wednesday, September 10, 2014
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 ...
Thursday, May 29, 2014
Jack's Journey - The Early Years Part III
Stay tuned.
Sunday, May 18, 2014
My Truth
It's been said that writing is storytelling that connects people through telling one's truth. So, I write what has been foremost in my mind lately. It's not exactly an uplifting piece, but it's my story. My truth.
As I held Jack in my arms during his final hours, all I could say to him over and over again was "I'm Sorry".
Since that day, I've thought a lot about what I'm sorry for.
I'm sorry he was born with such an unforgiving disease.
I'm sorry he was hurting and he couldn't tell me where it hurt or how it felt.
I'm sorry I couldn't stop the pain.
I'm sorry I couldn't make him better.
I'm sorry I couldn't find doctors who could make him better.
I'm sorry for all the things he tried to tell me and I didn't understand.
I'm sorry for those times I wasn't as patient and gentle with him as I could have been.
I'm sorry I went to work and didn't stay home with him those last months of his life.
I'm sorry I didn't spend every night sleeping with him during his final months.
I'm sorry I didn't crawl into bed with him at Ryan House and hold him every second of his final days.
I was sorry I left his side at all during his final days.
I'm sorry I didn't talk to him more his last day.
I'm sorry I didn't touch him more his last day.
I'm sorry I didn't know it was going to be his last day.
But, despite all the things I'm sorry for,
I can say with certainty what I'm not sorry for.
I'm not sorry that January 5th was his last day
Because,
I'm not sorry that he is no longer hurting.
I'm not sorry that he is in his heavenly home and experiencing the joy of eternal life.
I'm not sorry he is finally free.
I miss him. I ache for him. I cry for him. Every single day.
But, I'm not sorry he is finally free.
Wednesday, May 07, 2014
Ryan House Speech
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Good morning. It’s an honor to share with you our family’s Ryan House story.
Sunday, May 04, 2014
Inching Onward
Understandably, I do better when I'm away from what holds the most memories of Jack. The hardest place for me to be is home. But, I can't escape out of town every weekend, so I've got to learn how to be home and be okay. I've just now gotten to where I can sit down in the family room and turn on the television. Television and Jack go hand in hand because it's what he enjoyed most. I don't sit for very long, but at least I'm sitting down with the television on. I don't know if I'll ever be able to watch another Disney movie again, though. I've heard good things about the movie, Frozen, but Mark and I can't bring ourselves to buy it because Jack is not here to watch it with us.
I'm finally able to spend some time in Jack's room. Jack's room is the master bedroom on the first floor and I'm forcing myself to carry the clean clothes from the laundry room into Jack's room where I'll fold them on his bed. I need to make myself spend time in Jack's empty room because maybe, just maybe, one day I'll be able to feel Jack's presence surround me there.
I've also been able to go through Jack's clothes. Jack's neurologist offered to have her sister make me a blanket out of Jack's shirts and other special items of clothing. Unfortunately, I got rid of many of my favorite shirts of his over the years because he outgrew them. (Silly me, I should have known that I was going to need those shirts for a memory blanket one day!)
This weekend, I took the monumental step of giving away most of Jack's vent, trach and feeding supplies. I gave them to a family who lives near me and whose daughter also suffers from a muscular dystrophy and is on the same vent as Jack was. I kept some supplies because I'm just not ready to let everything go. It took me years to accept so much of what was necessary to keep Jack alive and it might just take me years to let it all go.
Next weekend we have an appointment to finalize the design of Jack's headstone and get it ordered. Having only a temporary marker doesn't feel right, it feels unfinished. We just need to get it done.
When you have a child with special/medical needs, you often measure their progress in terms of what we refer to as "inchstones". When you lose that child, I think it's fair to say that you can measure your own progress forward on the grief journey in terms of inches. I've achieved a few of my own inchstones this last month. I can only hope that Jack is as proud of me and my inchstones as I was of him and his.
I miss him. I ache for him. I cry for him. But, as difficult as it is, I'm ...
Inching Onward.
Sunday, April 27, 2014
Ryan House Community Breakfast
Sunday, April 13, 2014
Unburdened
It has been quite some time since I've attended a place of worship and while I have a strong faith, I don't have a strong attraction to buildings where people gather to worship. However, while in St. Louis, I took the opportunity to attend two different services, both of which seemed to speak to me. On Friday evening, I attended Shabbat service with our friends David and Amy. I loved everything about it - the music, the readings and the feeling of community. During the d'var Torah (sermon), the Rabbi shared a story of a family in the congregation who had recently lost their son to cancer and the message was about being there for others in their time of loss. Such an appropriate message as I sat between my two dear friends who have been there for us and supported us since the day Jack was born.
On Sunday, I spent the entire day with Jack's neurologist. When I asked her if she would have some time to see me during my visit, I didn't expect her to give me an entire day of her time. We started the day by attending Mass together at a beautiful old Catholic church on the campus of St. Louis University. The sermon that day was about friendship. The message wasn't lost on of either of us, as we both recognized the friendship we share. We spent the rest of the day together - talking, visiting the Missouri Botanical Gardens and raising our beer glasses in a toast to Jack at a local Irish pub. While we talked about many things, I did ask her to put on her physician hat at one point because there were two things I needed to know from her: (1) what she believed caused Jack to be in so much pain; and (2) why was Jack no longer able to be supported by the ventilator at the end. In her opinion, both came down to heart failure. What she explained to me made sense. (She is one of the top neurologists in the country, so I suppose she should make sense.) I needed to know and believe that there wasn't anything more I could have done for Jack - something I hadn't yet been able to find peace with. She gave me answers that I could accept.
During my week in St. Louis, I shared memories and tears with some of Jack's former nurses, both home health nurses and hospital nurses. I spent a couple of days with Peg, enjoyed time with my sweet friend Jenny, went on a couple of great hikes and was pampered by our friends, David and Amy. I'm so grateful for all the love and memories shared with "Jack's people".
The most emotional day for me was the day I spent on the St. Louis Children's Hospital campus. I started the day by meeting Jack's neurologist for an early lunch (apparently, she wasn't tired of me yet). As we were walking back from lunch, she pointed out a willow tree, not knowing its significance to me. I didn't recall seeing the willow tree during our last visit to Children's and I probably wouldn't have even noticed it if Jack's neurologist hadn't pointed it out to me.
After saying good-bye to Jack's neurologist, I went by the eye clinic and left an "Onward" stone for Jack's ophthalmologist and then to the ENT clinic where I gave an Onward stone to the trach nurse and also left one for Jack's ENT. I included a note with the stones so they would know the meaning behind the "Onward" message. I walked around the hospital, as much as I could, and spent some time in the chapel where I had prayed so many unanswered prayers. I walked around the Washington University Medical School campus and went by the Central Institute for the Deaf - the place that brought us to St. Louis in the first place. So many memories as I was walking around. Thinking more about the significance of the willow tree on the campus of St. Louis Children's Hospital, I felt moved to bury an Onward stone at the base of the tree. What better way to push Onward than to leave all the burdens and painful memories with the willow tree. Ever Bending, Never Breaking. A sign from Jack? I'd like to believe so.
After I buried the stone, I stood by the tree and listened to a song on my playlist titled "Fly Away". The song is on an album of lullabies that I would listen to with Jack. When that song would come on, especially during Jack's final days, I would imagine Jack flying away to heaven - away from all the pain and hardships of his life. I stood by the tree and allowed the tears to fall.
I will be honest and tell you that after being back at St. Louis Children's and seeing so many children who are enduring many of the same challenges as my sweet Jack, I walked out of the doors for the last time knowing that I'm glad to be done with it all. I'm glad for Jack to be done with it all. No more medical people. No more x-rays, ct scans, echos, bronchs, anesthesia, surgeries, blood draws, IVs, wheelchairs, trachs and vents. No more trying to outrun a disease that was always going to win in the end. Yes, I would do it all over again and yes, I would continue to do it all if Jack was still here. Yes, I will always profoundly miss my beautiful son, but I don't wish him back here. He is free and that gives me peace.
Spending last week in St. Louis was very healing for me. The word that best describes how I feel after talking with Jack's neurologist and getting the answers to my questions, after being back at Children's Hospital, and after leaving it all at the base of the willow tree is "UNBURDENED". I feel like I was able to let go of so many emotions - not the least of which is guilt. I finally feel some peace for Jack and for me. I also feel like I'm going to be okay.
I've heard people say that a cardinal represents a loved one who has died. The picture at the top of this post was taken while walking through the Missouri Botanical Gardens with Jack's neurologist. A sign from Jack? I'd like to believe so.
Thursday, April 03, 2014
Jack’s Journey – The Early Years Part II
I was so wrong.