They say that with a chonic illness or disease that grief can be in a constant cycle. I think it is true for Duchenne. And today I am stuck in the “angry” part of the cycle. I’ve shared my heart with you when I’ve been so sad I thought it could stop beating. I’ve shared with you the many blessings and joys of my heart. Today’s post will not be one of graciousness or beautiful prose…that is my disclaimer.
We were at the hospital all of last week for our sons’ appointments. There were no emergencies, they were all scheduled as part of routine care. We do this every 6 months. Despite some changes that will come from our visit, the final results were that the boys are, for the most part, stable.
Stable is a good report. Stable allowed me to take a deep breath. Stable means they are not worse and for the time being we have held off the inevitable. We have held off progression of the disease that will try it’s damedness to take my boys.
We’ve spread the word. We have spread the ‘stable’ world. We spread it because it is in fact better than more decline or progression and in the last year we have had 2 of those visits, 2 visits where we didn’t even get stable. Those reports are hell. After those reports there are no deep breaths. There are tears and a new layer of pain over the scar tissue that remains from the last time we got bad news.
We’ve been home for almost 4 full days. I feel horrible. I feel exhausted and every movement seems to take all the energy I have. I don’t feel like smiling or talking and do not expect any form of ‘socialble’ to come from me. I had a hard time following a conversation I was having this morning. I walked around the house looking for my phone as I talked on it to my husband.
I made myself go for a run today and stay on the treadmill for an hour searching for some clarity and peace. Finally, it clicked. I am pissed.
I am pissed because they are stable. I am pissed because we have been forced to live a life that has us celebrate stable. I try really hard to be bigger than this. I focus on the positive, on the next steps, on the good. It is good that they are stable. But because I am a mom of kids with a chronic and fatal disease I have to settle for less. I don’t want to settle for less.
I want improvement. I want to leave the hospital just once having heard the words, “He has improved.” I want to hear, “It looks like he is going to beat this thing.” I want to celebrate that report, not stable. I want more than stable.
I’m crying right now. But these tears are hot with anger and they sting. I feel trapped in a reality that no one should have to live in. I feel like screaming.
I break down in tears when I don’t expect them. I want to scream at the world. I want to drink too much wine. I want to run until it doesn’t hurt anymore. I don’t want to be nice. I want to use vulgar language. I want to drop an f-bomb. I want to park behind the next person I see parked illegally in a handicapp spot and honk at them. I really want to scream at the next person that tries to sell me a natural supplement or herbal vitamin. I never say anything because it might offend someone. But damn it. I’m offended. If there was a vitamin out there that could save them, we would have it! I’m tired of being offended by well meaning comments that feel like a stab in the heart. Im tired of being offended and never saying anything back because I try to see the good in what they are doing; even when they can’t see the hurt they cause.
It feels better to write it down. I will probably never do most of things I feel like doing, but I can write it down. And if you catch me acting in a way I describe, you’ll know why. I’m human and going through something most humans will never experience.
I’ve been here before. It won’t last. But it is an important part of how I do this. People ask me all the time. How do I do this? I don’t know. I can’t really work the steps, but when the cycle of grief comes to me, I let it. I have to feel it. Allow myself to feel it. I have to validate these feelings because they mean something and very often they become the fuel that drives me to do everything I can for my kids.
In a couple of days the new therapies will have begun, all the new prescriptions will be filled. All the new will gradually become part of our normal and the feelings of anger will subside. The reality is that I have to hope I’ll be here again in 6 months, because I won’t hear the things I long to hear, but I hope I can hear ‘stable’ again.
There are always little bites of anger and sorrow and I can ignore those little bites and focus on the blessings and joys. Today they are less of a bite and more like Jaws hanging off my shoulder and that can not be ignored. I can’t let the beast take another bite, but for today and for the how many ever other days it takes, I’m going to be jaded.