Angry wastes my time. It's unproductive. It doesn't make me happier. It takes joy. It takes happiness. It sucks the life out of everything. When I rage in anger at any of them, inevitably it makes the situation worse. Kreed doesn't know better or even if he does, he can't always comprehend his consequences and his brother is still unable to see long term consequences.
I want to be angry at so much. Most people don't ever hear me talk about this. I'm patient, I'm kind, I teach. I am able to be that way because I don't spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger- all I see is what it's front of us right now and I have to deal with it.
Sure, some people can be angry that then I don't have these super huge dreams or think about way in the future what things might be like. But why? I can't predict the future. I can't change the past. I have my present now that can affect both. I can improve my situation from the past and I can plan for the future by what I do now. So I figure it's win win.
I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different or he would be driving or dating or thinking about college. But why? It's not our present. It's not our life. My life is giving Kreed the happiest life possible and to always, always teach him so that he will continue to interact with his environment and people in the way that he wants and to find meaning within his own life. That's our life together. I can't separate my life from his to any meaningful degree because we are connected on levels most people would never understand.
Can I go out and have fun while he enjoys his respite time- absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular and after those brief moments of time, everything comes back to how it is daily.
A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapy. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn't matter anymore what started Kreed down this path, only the progression. I don't care what celebrity has this or that because they do not live in our life or help in any way. I don't fight about therapy because Kreed is 17 and we know what works and what doesn't and I don't care if other people do the same or not- our kids aren't the same. I do not have the luxury of anger in our life for our actual life so I certainly don't have the luxury of anger for things that have zero bearing on our life. I'm too busy immersed in the life every day 24/7 to give a care about what anyone else is doing or how they feel about some celebrity that may or may not be on the spectrum and on a much further end than my own kid.
A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapy. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn't matter anymore what started Kreed down this path, only the progression. I don't care what celebrity has this or that because they do not live in our life or help in any way. I don't fight about therapy because Kreed is 17 and we know what works and what doesn't and I don't care if other people do the same or not- our kids aren't the same. I do not have the luxury of anger in our life for our actual life so I certainly don't have the luxury of anger for things that have zero bearing on our life. I'm too busy immersed in the life every day 24/7 to give a care about what anyone else is doing or how they feel about some celebrity that may or may not be on the spectrum and on a much further end than my own kid.
I don't have the luxury of imagining a life that's different or better. The life is how it is. Whether it's helping Kreed succeed in communication or his brother to succeed in being independent- they are the children that were brought into this world with the promise that they would be loved unconditionally and be supported to fulfill their dreams and life. It doesn't matter if autism entered the picture or Asperger's or Kreed's thousands of medical issues. It just is. I can't change it, but I can make things better.
Some nights I might cry. Some nights I might yell. I am only human. Some nights I feel numbed out. Caring for Kreed is a 24 hour a day, 7 days a week job. For life. Some days things go easy. Other days he rages without cause and I just keep him safe. I always try to figure it out. The more I figure out and teach him he better it is for us in the long run. So I don't get angry for long or much because time is too short and precious for that.
Then I would miss moments like these:
Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there is not much of an existence but rage and poop or pee or nakedness or days and days of sameness. But it's not about those moments that make me angry. It's about these moments that make me happy and him happy.
And I know in the end our life is enmeshed and for whatever reason we are working very hard to show the world Kreed's kind of autism and what we do to help him be successful that might work for other kids or adults. To do what people did not think was possible and for people to understand that our kids have #nolimits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all- this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry, I try to find more joy in the new day.
Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else's. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed's dimples so your read about our journey. But at the end of the day it's our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my news feed because it's not part out our truth. At this point in our life, our truth is all I can handle.
And for the boys affected and struggling, I don't have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth.
Wonderful entry. This one is definitely one of my favorite reads of yours so far.
ReplyDeleteWow. You've really moved me. Please keep writing honestly.
DeleteThis is a beautiful, poignant post. Thank you.
ReplyDeleteBelieve it or not ...you keep me strong. Your writing gives me an enlightenment when it feels like all else is failing around me and my son. I thank you for that. I pray we see those dimples again real soon....as they are missed by many.
ReplyDeleteThank you for this. If I could write up a blog entry about my son and us, I would have written this... I agree wholeheartedly and it can be irritating at times to be surrounded by people in our community that 'feel bad for me'... My husband and I promised that whatever we tried, every decision was for and about Ryan. When he is happy and progressing, so do we.
ReplyDeleteThanks for taking time to share your story. I know many of us enjoy being reminded that the struggle is real and unique to each family
I don't know you, Erin, but I admire you and respect you so much. I fell in love with Kreed early on, and feel pain at his passing. Nothing could ever begin to compare with your pain, and I wish I could make it all go away. Know that there are so many people who loved Kreed and who love you as well. I will always remember Kreed, and I will always think of you.
ReplyDelete