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") 


Anonymous said...

Ah sweetie, my heart bleeds for you so much. No-one really knows how hard this new "normal" life is until they've been through what you have. I kept Angus' bedroom door closed for quite some weeks as going in there just made me crumple to the floor and sob for a long time. I am so grateful to his most loving carer who came round and helped me sort through all his stuff. I couldn't have done it otherwise.

I wish I had words full if hindsight and wisdom to help you through this painfully raw time, but I don't. So be kind to yourself and endure the best you can. It does get easier with time and you can start to enjoy your new freedom more. Allow yourself to. Live your freedom for Jack, as you know he would have loved that. Xxx

Lots of love, hugs and tears from
Kate xxx

E Fischer said...

Words fall short of comfort's arms Ann. I think the lights are beautiful and I see nothing irrational in your feelings. Feelings that spill over the boundaries of thought and intention and bring us to a state of confusion.
I like to think I am preparing myself, knowing how I will react but of course this is folly.
But whether the door is open or closed, nothing in there can diminish the memories, nothing can touch the inseparable connection with your son. What is outside cannot touch what is inside.

Dawn Wieczorek said...

Ann, I can't begin to imagine what you are feeling. I only hope that the pain lessons and the memories remain strong. Your photo from the cemetery reminded me of the company owned by my step cousin in honor of her sister. makes grave markers that are solar powered to remain lit at night. They can customize them too. We keep thinking of all of you!

Cindy said...

I have no experience with losing a child, but lots of experience caring for children with all kinds of special needs both personally and professionally. I can tell you that in caring for Jack, you did everything right. Jack was very lucky to have you for a Mom!

Susan said...

Everything that you describe seems a normal part of the grieving process to me Ann. I love that Kate commented because I think there must be some comfort in hearing from a mother who has been through this. As a mother who hasn't I feel at a loss. I wish that we lived close and I could be there physically to lend an ear or shoulder. You are in my thoughts.

Karen Gerstenberger said...

Dear Ann,

I love the lights you bought - they remind me of fireflies, the way you have them in that jar.

About the door to Jack's room: we know a couple who disagreed about whether to keep the door to their daughter's room open or closed after her passing. The husband walked by and closed it; the wife walked by and opened it. She spoke of this as a "silent argument," day after day. It shows how different it is for each one of us, even if we are parents of the same child.

When I was musing about not feeling capable of going through Katie's things, one of my closest friends (whose baby died at full term) said, "Fine; today, there is no need to do it. You'll do it when you can. Today, you can't, but there will come a day when, all of a sudden, you can, and then you will. Don't pressure yourself." And she was absolutely right. I did it in stages, and that worked for me. Having an exchange student come and stay motivated me part of the way; having a quilt made of Katie's clothes helped me to sort out a bit more. There is still more to do, 7 years later, but it's okay to want to preserve some of it. She will never have another room made up just for her; why rush dismantling it?
God bless you and your family, Ann.