Ebb and Flow of Grief

Recently I was told I needed to schedule my grief. Or, more specifically, I needed to set aside time everyday to cry for Luke.  I wasn't sure how to take that piece of advice.  As I look over the last 15 months since Luke died, I can see a huge improvement in how I have handled things.  In the beginning, it took everything I had to get out of bed every day and go to work or do anything around the house.  We ate a lot of grilled cheese sandwiches and mac and cheese.  The kids did the laundry and took out the garbage.  I didn't go back to work until after the kids went back to school, although school for me started the week after Luke’s funeral.

The waves of grief were overwhelming.  At any moment, I would not be able to breath, the weight of the entire world would rest on my chest, the tears would flow; there was no stopping it.  Anything and nothing would trigger these episodes.  It was a horrible way to live.  A week before I was scheduled to go back to work, I got a call on a Sunday morning that the dispatcher scheduled didn't show up, could I come in to work.  I went in, relishing the feeling of the normalcy of work.  Nothing at work changed, the techs were the same, the work was the same, I was alone in the office with the phones and computers.  The day was going fine until I started missing Luke and picked up the phone to call home and talk to him.  The breathlessness and tears came in full force.

Since then, the days of not being able to breathe and the tears have slowly decreased, instead of a few times a day, to once or twice a month.  There are still times that hit me unexpectedly, seeing little boys that are Luke’s age or that look like him.  Seeing a picture or status about him on Facebook or Time Hop.

Now I cry on the way to work, if I get to leave work early, I head to the cemetery before going home and have long talks and tears with his headstone.   I cry before going to bed, silent tears as I get ready, sometimes on more difficult days, sobbing in the shower.

The last week was bad, getting ready for Christmas and missing Luke.  The feeling of despair was weighing heavy on my heart.  I wanted to crawl in a hole and die most days.  It took everything I had to get out of bed and function.  I have noticed it is the days leading up to a holiday, anniversary or other special day that are harder to deal with than the actual day itself.  Last week was our Christmas party at work.  Even though Luke wouldn't have been a part of that in any way, except maybe helping decorate cookies, it was a hard day.  My secret Santa gave me an ornament for each of my kids, including Luke.  That brought on a fresh wave of tears, not only did she remember him, she included him.

There are good days, days when I can laugh, when the kids have fun and are kids again. When the world isn't so dark and dreary, have glimpses of light and air. Days my every thought is not consumed with the loss of my sweet baby boy.

I started this post a few days before Christmas.  On Christmas day, I woke up feeling like a weight had been lifted off of me.  The craziness of the Christmas season was over, I was able to sit back and enjoy my family and our day. 

I have not had so many bad days, but I have had some wild dreams.  Some include Luke, some don’t.  The ones that don't leave me shaking my head, sending a tech to Africa to install cable only to have him get lost while I watched his truck drive along the ocean border. So I hopped a plane and road a pig to find him…

There are still days when I can’t catch my breath or thinking about one thing starts a chain reaction of thoughts and memories that leave me in a puddle. 

We are short-staffed at work right now, so everyone is working more hours and more days, leaving us all on edge.  The lack of sleep and time off isn't helping any. I need to replenish the tissue supply more often than ever right now.

K stepped on glass the other night, bleeding all over my house.  It was obvious fairly quickly that she needed to be seen, so off we went to the nearest hospital instead of Children’s where Luke spent his last hours.  I thought everything was OK until she started crying, having flashbacks of the PICU with Luke.  She spilled her heart as we talked about what could have been and what we could have done differently.  It was a hard lesson in hindsight being 20/20.  We had a good talk about God, and how He knows our entire lives before we are ever born.

The kids and I are surviving; there are more good days than bad days.  But there is still a huge hole in our lives.  That will never change.

So goes the ebb and flow of my grief…..

Snap, Crackle and Pop

Snap, Crackle, and Pop are the team of therapists who have walked Jonathan, Katie, and me through the last 5 months of grief. 

We first met Snap last year after Luke was diagnosed with ADHD and ODD.  She became my lifeline to accessing services and help for Luke at home and at school.  She worked several kinds of magic to make sure Luke had the therapy he so desperately needed.  She was/is a life saver!  Snap is our Care Manager.

     Pop was Luke's first therapist.  She was incredibly patient as she learned more than she ever wanted to know about Mario Bros. and Webkinz.  Luke was a computer junkie and would have spent hours watching YouTube videos of people playing Super Mario Bros.  Pop was around for about five months, with the understanding we were waiting for a male therapist to free up, then Luke would transfer to him.  I loved Pop because she is a reader, after Luke's therapy, we would talk about books. 

     In May, a male therapist finally had an opening for Luke and we met Crackle. Crackle is a no-nonsense therapist who would go round and round with Luke like no one else!  He is very articulate and could definitely hold his own against the little boy who could talk an Eskimo out of his igloo.

     The day of Luke's accident, I think I send several text messages them all telling them what was going on with my baby.  After sending several messages, I finally focused on Crackle alone since he was Luke's therapist at the time. 

Luke with Austin and the two Mario's

Thinking back and looking at those messages, I can't imagine what I put those people through.  But they handled things with grace and professionalism.  Crackle came to Kosair on Sunday afternoon and spent quite a bit of time with Luke.  He also sat with Jonathan in the waiting room, talking to him about what had happened and offering a friendly ear and shoulder.  He brought Luke a giant Mario doll that Luke never saw.  The doll was in the pictures we took of Luke in the hospital, front and center on Luke's table at his memorial service and sits on the top of the bookcase with other Luke items in my living room.               

Luke's Memorial Service with
Austin the Dog, Mario the Bear
and the Original Mario.

     After we came home, Crackle kept in touch with Jonathan.  He visited a once or twice that week, and said he would be there for Jonathan at Luke's memorial service if he was needed.  He continued to come until school started and Jonathan was able to connect with a few people at school.  Later on, when it became obvious that was not going to be enough for Jonathan or Katie, Snap and Crackle helped us secure services for both kids.  Crackle saved a space in his schedule for Jon and Pop said she would come back as Katie's therapist.

     With these two people, we have talked about "The Hard Stuff", the good things, cried and even screamed and yelled.  But they come back every week anyway!  I owe my sanity to them both, they have gone above and beyond, coming extra days when needed, staying for hours and hours making sure we were OK before leaving.

     Obviously they all have real names, but to protect their identity, {they may not want to claim us ;)} I gave them nicknames.  They used to be the Three Musketeers, but in my warped mind, they all met at the office every day before starting work and talked about their cases over a bowl of cereal. Hence, Snap, Crackle, and Pop were born.