by Jessica Rownd
Jessica Rownd has two boys: one with Duchenne Muscular Dystrophy and one without. She is a great advocate in our community, blogging her life experiences and collaborating with many of our non-profits. To read more of Jessica’s blog about her family’s journey with Duchenne, please visit Laughing Through the Tears.
Shock, Denial, Grief…All a Nice Place to Visit
It Happened Overnight
When Wyatt told me he wasn’t going to walk much longer on April 20, 2022, I was in shock. I am still in shock but a little less than that first morning when he couldn’t get to the bathroom himself.
It happened overnight – I guess not really if I honestly think about it. We have been watching him decline for 2 years. I have known it was coming for a while but I surely didn’t think he would tell me one day and it would happen the next morning.
As I reflect on it, I realized that recently when people would ask “how’s Wyatt? I haven’t seen him out in a while.” I would say things like “it is getting a lot harder for him” or “I am pretty certain he will stop walking this year.” I would watch their faces change to sadness and pity though somehow I could say those words without much emotion.
I guess I thought that since we have been preparing for the day it wouldn’t be as hard when it happened. Well I was totally wrong! I guess the best made plans aren’t really plans when you haven’t lived it yet. Those small steps he could still take, the ability to transfer from his chair, the ability to be independent were taken for granted.
Not being able to do anything with his legs is a total game changer. I know that we will adapt and be everything Wyatt needs us to be but living in the shock stage for a few days is a lot easier than actually facing it.
I’m in shock of how I have been living life as if it wouldn’t be this soon! In a way I’m upset with myself for not being more prepared, but in reality I felt ready.
Why had I not thought of all of the things…like how am I going to do everything for him BY MYSELF while Patrick is at work. How am I going to travel to the trial with him BY MYSELF…with luggage, and a dog, and no power chair or accessible van.
Shock, Fear, Denial
Over the past few days I have moved from shock to figuring it out but then it becomes ALL so overwhelming….so I sink back into shock and fear where I can just be still and not plan. I only allow myself to be in shock for a short while at a time, and actually now that I think about it, I could call it denial and maybe grief. I can’t live in any of those places in my mind because life is moving and I have to help Wyatt and the rest of my family move forward.
There have been many times this past week I have wanted to just curl up in bed and not see anyone, not talk to anyone and just deny that the day we were hoping wouldn’t come has arrived. I don’t want to hear “It will be ok” when I tell someone about it.
But I can’t! I have to get up, get the kids ready for bed and go to work. So that’s what I do…by the end of the day my mind is exhausted, my heart is exhausted. I know it has only been a week and I shouldn’t expect to be back to normal but it’s hard not to want my old normal back, even though he couldn’t walk for long periods, he could at least do some things.
Many of you have asked how we are. It’s hard for ALL of us. And all 4 of us are dealing with this in a different way. We are all coping in our own way and none of us are curled up in bed right now so that is a win.
We are all just taking it one day at a time, and sometimes just one minute at a time and checking on each other. We will come to the day where we are more comfortable with our new reality, but right now I will continue to take a break in my shock, grief, denial place every once in a while.