Sunday, March 30, 2014

More of the Same

I miss Jack.

I will always miss Jack. I’ll continue to say it and I’ll continue to write it. Bear with me because me missing Jack will never change. I was at the cemetery today and saw a banner with information for a “Grief Recovery” support group. Really? As if it’s even possible to "recover" from the death of my child. One doesn’t recover from grief, one merely learns to live with it. Okay, maybe it’s just semantics, but the message bothered me.

The days continue to be hard. I’ve cried more in the last two and a half months than I have the last 15 years. People have been telling me for years how strong I am and, yet, I never felt strong. I just did what I had to do for Jack. Jack was my motivation and my inspiration. Without Jack, I have to tap into every ounce of strength I do have just to get out of bed and give a damn. People tell me that Jack is still with me – in my heart. Sorry, I just don’t feel it. I don’t feel him at all. I think he must be mad at me. In the end, I couldn’t help him. I couldn’t keep him from dying. The guilt can be overwhelming at times. That’s probably what I need to work on more than anything  - letting go of the guilt.  I trust that time will get me there.  

I spend a lot of time at the cemetery. I go by in the morning on the way to work, at night on the way home from work, and at least once, sometimes more, on the weekends. The cemetery is about a mile and a half from our house, so I will often walk up there on the weekends. Hanging out at a cemetery is not something I ever thought I’d do. Then again, I’ve never buried a child before, so what did I know.  It’s another one of those things that I’m guessing time will heal and, eventually, I won’t feel the pull to go there as often. I don’t know. I don’t know much when it comes to this leg of the journey.   

Today's view

I’m heading to St. Louis at the end of this week. I’ll be there for a week and I’ll be spending time with “Jack’s people”. I’ll be visiting St. Louis Children’s Hospital, handing out “Onward” stones and just walking around the campus and visiting the places Jack and I used to hang out when we were there. Hopefully, it will be a sunny day because I’ll need to wear my sunglasses to hide all the tears I expect will be falling. It sounds strange to say I’m going to miss SLCH. But, those of you who have medically complex children understand the connection to a hospital and the medical team that cares for your child. Saying goodbye to SLCH is another painful step in the journey of letting go and learning to live life without my sweet Jack.

Finally, I was going through my old text messages on my phone and went back to January 5th – the day Jack died. The text messages between Mark and me are tough to read.  With Mark’s ok, I’m sharing them. I'm sharing them mostly for me because I want to preserve as much of this journey as I can and, as painful as these are, they need to be saved.

(As I shared in Jack's Last Day, the decision to remove Jack from the vent never had to be made by us. Jack made that decision himself)

Thank you for all your love and support. You help me to push Onward. xo

Monday, March 17, 2014

Missing My Irish Angel

When Irish eyes are smiling, 
Sure,'tis like the morn in Spring.
In the lilt of Irish laughter, 
You can hear the angels sing.

Thursday, March 13, 2014


We've rounded the corner on the two month mark since I last saw and held my sweet boy. It feels like it's been two years. I've been spending a lot of time looking through old blog posts, pictures and video clips and I hardly recognize the happy child that appears in those memories. At the time, I didn't appreciate how good a life Jack really had and how good he looked despite all he had going on.  Oh, how I miss that happy Jack. I struggle to remove the images and emotions of the last difficult months of Jack's life from the forefront of my mind. I can't yet replace the painful memories with the happy ones.  His memories are not a blessing.  Not yet, anyway.

The tears still fall every day. They fall in the mornings on my drive to work. They fall every night when I carry on a one way conversation with Jack before I close my eyes in anticipation of the sleep that eludes me. They fall when I listen to music. They fall as I am asked to choose a headstone for Jack's grave. Today, in particular, my tears are intermingled with anger. I'm angry that I have to live the rest of my life without Jack. I'm angry that I have to pick out my son's headstone. I'm just f-ing angry. I'm not sure which is more draining, sadness or anger. Regardless, I'm drained.

I'm also thankful. Thankful for the amazing and continued support I receive every single day from my friends and family. The text message, email, card, Facebook post, telephone call and offer to spend time with me do so much to lift my spirits and keep me from sinking into an abyss of isolation and despair.

If you were to ask me how I'm doing, I'll likely tell you, I'm doing "OK". And, I suppose I am. After all, I get up every day, take a shower, get dressed, go to work, care for my family and my home, hike, go for walks, participate in 5Ks, give interviews, run a Foundation, spend time with friends. I even smile and laugh on occasion. So, yes, I am doing OK.

And speaking of Jack's headstone, we are still trying to decide exactly what we want. If cost wasn't an issue, the decision would be much easier. Mark commented the other day that we should just dig him up and bring him back home with us. It's tempting, I'll admit. (But, don't worry, we won't do that.) The one thing we are sure of is that we will include the following words by Maya Angelou on his headstone:

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.

We can, indeed, be and be better because Jack existed.


Monday, March 03, 2014

The New Days of Our Life

I've sat down to write a blog post more times than I can count, but I can't seem to gather my thoughts enough to come up with something coherent. I want to write for you and I need to write for myself. So I'm just going to write and not worry whether it's my best writing.

Life without Jack is monumentally different. I didn't just lose the companionship of my son, I lost my life. For fifteen years, everything I did revolved around Jack. I now have the freedom I haven't had in years, but I don't enjoy it. I still can't bear to spend time in Jack's room. It takes every ounce of strength I have to not close the door to his bedroom so I don't have to look into his empty room. I can't listen to any of the music I listened to with Jack when I would lay in bed with him at night, especially during the last months of his life. I can't stand to be home because being home always meant being with Jack. The last movie Jack watched is still sitting in his DVD player; his travel bin we used to take all his stuff to Ryan House sits in his bathroom unpacked since the day we brought it home. I still haven't washed his clothes. I have tons of diapers, supplies and formula to give away, but I can't force myself to go through and organize things. I miss ordering his monthly supplies. I miss the connection with the people who helped me care for Jack. At least seventy-five percent of the contacts in my phone are Jack-related. I can't force myself to delete the contacts even though I'll never have any reason to call these people again.

When Mark and I both have to be places at the same time, I catch myself thinking - who is going to be home with Jack? For the first time in fifteen years, I leave the house for work without waiting for a nurse to show up. There are many mornings that I go to the cemetery and drive by Jack's grave site on my way to work. I'm not sure why, it's not like he's going anywhere. I still worry about him. Last night I was in tears because it was raining and it made me sad to think about Jack being out there in the rain and the dark all by himself. It's all very irrational, I know.

I still struggle with and am haunted by every decision we made for Jack the last two years of his life. Should we have intervened more? Taken him back to St. Louis to be evaluated by his team of physicians before we transitioned him to hospice? When your child dies, you can't help but ask yourself if you should have done things differently. Of course, I'll never know and there won't be one person who will tell me I should have done anything differently. But, I will always wonder.

I've read enough about the loss of a child from other blogs, essays and books, and in talking with parents who have walked this journey before me, to know that my doubts, irrational thoughts and nonsensical actions are all normal and part of the grieving process. I will grieve for Jack the rest of my life. And while I must learn to live and find joy without Jack's presence, I'm hopeful that I will eventually feel guided by Jack's spirit, especially as I try to find new purpose and direction in my life.

Speaking of purpose and direction, on Friday, I will have the honor of being interviewed by Adam Larsen for a documentary film that he and the organization Caregifted are creating, titled Undersung. I was asked to be interviewed for the film before Jack died. When I told the founder of Caregifted, Heather McHugh that Jack died, I also sent her and Adam the link to my post "Jack's Last Day". They both said that they still wanted to interview me for the film. (Heather also posted "Jack's Last Day" on the Caregifted website.) I'm excited to be part of this project and I hope Jack's spirit will guide me and give me grace during my interview. You may recall that Caregifted is the organization that granted me, as a long term caregiver of a disabled child, a week of respite in Victoria, BC. Even though Jack died, Heather is still allowing me to have the week of respite - which I will take in June. Caregifted and Willow Tree Foundation have very similar missions, so I know that Heather and I will have a lot to talk about when I see her in June.

In the meantime, you know what we must do ....

Keep pushing ONWARD my friends.


the pictures of Jack that we had made for his funeral are now hanging in his room

My irrational self bought a jar filled with solar powered lights 
to light Jack's grave at night

drove by tonight to see if the lights worked - they did!

we put the "Onward" stone in the jar

My final tangible reminder of Jack - his thumbprint 
(the heart is from my friend Christy  - it stands for "finding beauty in the brokenness")