This was a facebook post from this day last year. I wanted to turn it into a blog post because I enjoy pretending to talk back to the Grief. Read on and you'll see what I mean.
I had a nice talk today with my department Chair (who was Willy's doctor for 11 years.) He was in the middle of ending a phone call when I walked over to escort him out of our building. (He was visiting the building I work in and didn't know the way out.)
He looked up at me kind of deflated and told me that another patient just passed. He was 13 and had a condition similar to Willy. He passed after a few good years on hospice where he had been doing relatively well, just like Willy. He also passed after a short illness of the lungs, just like Willy.
He asked me if I'd be willing to talk to the parents and see if I could offer any assistance. He asked if I was up to it and I told him of course. After getting more information and authorization from the mom, I was given her name and phone number. She told Margy Fox, one of our most fabulous clinicians, that she'd very much like to talk to me.
Apparently they'd like to talk about the things you'd expect but they also have a ton of durable medical equipment and supplies to hand off to a new family.
I plan to meet with the family and see what I can offer them. I can definitely help with emotional support and find new homes for their supplies.
He and I got to talking about PTSD and if it would bother me. I told him of course it does. I mean, I work for U of M Medical School. Every time I have to go to the hospital or med school (I walk through the hospital to get to the med school) there are a hundred triggers. Sights, sounds, and even worse, smells. I will never forget the different smells that float around the hospital. Especially the wipes...
It puts me in a bad place, but temporarily. Once the initial wave is over, I gain momentum. Strength. Every step forward is progress. Every phone call I make to help another family is progress. Every medical supply that I try to re-home is progress. My basement is full of medical supplies right now from donations. Little by little I find new homes for them. Does it bother me to see green and blue pads in my laundry room? Of course. They were liquid gold when Willy was here with us.
But there is a larger mission. There are needs that need to be fulfilled and because of my job contacts, I am in a unique position to fill them. Do I say no? No. It's hard to say no.
I know what these parents are about to go through. It's life changing. A child should never pass before their parents. It's the worst grief imaginable. Their life is forever changed.
I will tell them it's shitty. I will tell them there will be days they are mad at everyone. There will be days when they'd rather scratch their eyes out than have small talk with neighbors, co-workers, family, friends, or random people.
There will be days when they lie in bed crying so hard that their eyes become crusted and fused to their pillow. They will want to punch things. They might end up punching something! The relationships they have with their friends and family will change significantly. They will lose friends. They will lose family members. They will gain new friends who become family members.
The relationship between the spouses will change. Some days for good and some days for bad. Their other children will suffer in quiet and closed-off ways that they may not notice.
They will get "the dark" as I call it. Your day could be going along fine when all of the sudden the dark hits: and it stays. It can stay for days or weeks. I just came out of a dark spell last week. And although I feel good right now, I know the dark is always around the corner. I gave it a presence and sometimes I put words in its mouth.
"Hi, Dawn. Remember me? I'm the darkness that is going to envelop you as I bring all of the saddest memories into your brain. I'm going to make you relive the night your Willy died while snuggling with you in your bed. How because you were spooning with him and your arms were around him you could feel his heart stop beating. How his sister, who was 9, threw herself on the gurney as the funeral home staff were taking him out of the bedroom. How you and the other three parents, his brother and sister, and his grandma and grandpa followed the gurney out through the house and into the dark night at 4:00 a.m. How, as you walked out, you all sang You Are My Sunshine to him.
Remember me! I'm back!!"
This is how it happens. Does it happen less as the time goes on? Sure. But it's always just as strong.
But as we are coming up on the two-year anniversary of his death, I can finally muster up some strength to talk back to the dark.
"Hi, Dark. Thanks for stopping by. I still want to grieve my son. You don't scare me. You make me sad but it's only because I loved that boy so much. To grieve so hard only means you loved so deeply. I wouldn't trade it. In fact, I welcome your visits because they remind me how much I loved my son.
Your visits also remind me how far I've come. No, things will never be the same. I am a mother whose child died in her arms after a horrific 11-year battle. But I've found plenty of ways to make positive progress as a result. I'm changing state legislation so that all kids can get a proper education. So that terminally Ill kids who are not actively dying can go to school and have their advance directives honored. I started a 501c3 two years ago, and although it's fledgling, it has over 250 members who are supporting each other, sharing stories, swapping medical supplies, and learning there's life after these diagnoses. I'm working on all sorts of special projects via my work connections that are meaningful and are making great changes. I've become a much more empathetic person than I was 11 years ago.
I am sad that Willy had lissencephaly but I like myself more because of our experiences with him. I'm still mourning him and a culture and lifestyle that was exhausting. 24/7/365. But slowly and surely there are lights poking through you, Dark. You're not as suffocating as you were. I'm learning to live with you. The times you come to visit I've learned just to roll with it. Let you do your thing and then when you move on, I will go about the work I have to do."
If you're still reading this long post, I thank you. Writing, blogging, and social media has helped me communicate my way through this journey. I appreciate each and every one of you who have stuck by my family these past 11 years.
Be kind. You never know what someone is going through.
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