Inching Onward

He's been gone four months.  Why does it feel like it's been an eternity? I've been told more than once that grief is a process. A process is defined as "a systematic series of actions directed to some end." Does grief ever really come to an end? Life is a process. Grief is an inevitable part of this process called life. I suppose what people are trying to tell me is that grief doesn't occupy a fixed set of time with a beginning and an end. One's grief ends only when one's life ends. Some days it's overwhelming and some days it's bearable. But, it will always be.

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!)  I gave what I could bear to part with to Jack's neurologist when I saw her last month. I still have the pair of pants that Jack wore his last day, I can't give those up or even wash them. They are the only thing I have left that holds Jack's scent. I have them tucked away under the pillows on his bed and I'll pull them out and hold them close to my face when I need to feel Jack close to me. 

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.

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As you may recall, my friend Eric wrote a poem about Jack after he died. Eric recently published a collected work of his poetry spanning the years 1995 through 2014. I ordered the book and my copy arrived yesterday. I was incredibly touched to read that several of Eric's poems were inspired by Jack, namely: "Jack", "Brave", "Good Tidings", "Carry On" and "One More Minute". Eric is an incredible and selfless father to his disabled son, Segev and he is a gifted and beautiful writer. I encourage you to order Eric's book here. You won't be disappointed.