I was always a positive force in my family, within my marriage, to my kids but suddenly faced with an illness that offered my child no chance of survival that felt fake to me. I felt guilty that I felt so dark. That faith, hope, positive thoughts were foreign to me and frankly, they pissed me off. I spent a lot of time trying to hold on to that part of me. Trying to fit the role of "mom of special needs child".
I was angry and I had right to be. I was scared and I was right to be. I was grieving the loss of a child I thought I had. That right there was and is the hardest part of all of it. I love him so much my heart could burst but there will always be the alternative him. The healthy child I never had but until diagnosis, I was sure I did have. The one that could ride bikes, play baseball, walk to the bus stop, walk into adulthood. the boy that wouldn't lose his ability to hug me. It feels so wrong to grieve what was never meant to be yet I'd be lying if I said I didn't.
Tragedy changes us and not always in the way the world, our friends, our families, or ourselves want it too. There just isn't a correct way to be sad or angry or grieving or for that matter happy. I know people think I complain a lot about my life. I do, brutal honesty helps me. I understand some people like denial and I get it, it's just not for me. Positive thinking wasn't working and I'm finally at a place that I am okay with that. I'm more cynical. I don't believe there is some magical reason this is all happening like it was predestined I simply can't believe that and function.
When Robbie was first diagnosed I kept waiting to find peace or clarity. I didn't find it in faith, positivity was pissing me off, and inspirational sayings or quotes were making me crazy. I realized that the really hard things, They don't fit into the boxes we want them too. There isn't a right way to be sad. There's not some special parent club you gain access too. There isn't a duchenne kid for dummies book. While I wanted to find peace where the world says I should, I could not. I still can't.
For me being strong and fighting through duchenne means to be super candid. It means saying "this sucks" when it does in fact suck. I know that for some people it looks like "complaining" or "drama" or maybe even "depression" but honestly I'm just working through shit. I feel it's healthy, to be honest and open about my feelings. It's not always going to be pretty but it's going to be real. I am mad and sad but I am happy and joyous too. I can't put on a happy face and pretend things are fine because I want my kids to feel free, to be honest about what they are feeling.
Having a sick child is draining. There are times I am so frustrated and stressed out that I have to cry. Ugly shower crying. I can't make this better for him. It's a painful truth and it's my truth. I've wasted so much time trying to figure out how to "correctly" deal with duchenne. How to "correctly" word my message as to not offend. It's a weird situation I think society puts people into.
We don't want to feel the yucky messy things so we try to minimize them in other peoples lives. We often use words and language to make ourselves feel better w/o a consideration to how it make the person actually suffering feel. I don't think its purposeful but I do think it's time to change.
We have to realize there are no words to make these things better. There is just not. If you tell me God has a plan when I have repeatedly said it makes me angry how does that help me? It helps you and I am glad it helps you, I'm glad you're comforted by that but please allow me to not be comforted by it. When I am crying hand me a kleenex. Let me cry, I need it. Let me be angry. Don't tell me to look on the bright side because you don't know how hard I have worked to find light and hope in a fairly hopeless situation. Give to charity, sign petitions, listen to be when I am down. That is all I need. If I am doing something that doesn't make sense to you maybe decide to let me have the space to handle something you are not or have not had to handle.
We have to start letting people be upset the way they need to be upset. We have to understand that sometimes a broken person is a strong person. That telling someone to smile because it's easier for us to look at doesn't cure what hurts them. We don't always understand the battles people are fighting.but we don't have too. We don't have to make it better. We can't make it better. We can make it easier, we can listen even when we don't like what we hear, all we have to do is be there.
