Today marked 36.
36 years on this Earth, and I think my face shows every one of them and then some.
I struggled today.
And it is difficult to explain why.
I suppose, to put it simply, this is not even close to what I envisioned life would be like at 36.
I suppose I struggled today because accepting reality can be so damn difficult sometimes.
And my reality is that I sat through an ARD meeting (also known as an IEP meeting) yesterday listening to educational evaluators describe tests results showing that my son is severely, incredibly, profoundly, greatly, monumentally challenged. BUT, despite those challenges, they would like to offer him an amount of therapeutic services that might be appropriate for, say, a kid who stutters.
My reality is that while I sat through this meeting I wasn't thinking primarily about my son's difficulties and how he will be challenged for the entirety of his life. I wasn't thinking primarily of how sad it is that our country places such a low priority on the education of its young people, much less the education of its special needs population. I wasn't even thinking of how stinking unfair it is that I cannot get a damn bit of help-- from insurance companies or the government -- for my son. Instead, I was thinking primarily about how my daughter, my son's only sibling, would handle the stress of trying to help her brother when she is an adult, and she is the only family member left for Daniel to depend on.
My reality is also that I have dealt with more pain the past three years -- pain completely separate and apart from autism -- than I have known how to deal with. The people who have read this blog since its inception know that I started it during a time in my life when I felt desperate and alone -- at a time when I saw my marriage blow up and my life completely turned upside down. I felt as if doors were continually being shut in my face, as if the person I had trusted most in the world had just disappeared, as if I was faced with a boatload of responsibilities for two beautiful children... and if I was not entirely alone, I was without the person I needed most.
That was the fall of 2009 -- a time in my life so horrible that the experience wiped many good memories of so many good years from my brain.
That time and the years since changed me in so many ways.
Some of them good. Some of them bad. And some of them ... well, I am just not sure. Is it a good thing or a bad thing when you go from thinking that most people in the world are honest and decent to thinking that such a belief is ridiculously naive?
Anyway, here I am... another year older if not any wiser. And the circumstances in my life have changed. And thank goodness they have. I know things can always be worse, but when I think of where I was two years ago, or even six months ago, if things had gotten much worse .... I hate to think about it.
I am not divorced, as you might have figured out from my last post.
I still struggle with how to be a good mom to my challenged son and my amazing daughter.
I still struggle with feeling like I am never doing enough for my children, most especially Daniel.
And now I struggle with mending a relationship that was once filled with so many expectations, so many dreams, so much friendship, so much laughter .... so much, so much, so much.
I have to continually remind myself that the heart is such a complicated thing ... just like the brain it is impossible to fully understand. I have to stop questioning myself and my motives and accept the simple fact that the things I am trying to do are based in love for my children and love for their father.
And I have to remind myself to try to live in the day, which is something I have been doing for an incredibly long time.
I am taking steps that I hope will help. I have accepted part-time employment, and I have even found myself in church -- trying to find comfort and peace within the rituals of Mass.
I have so many wonderful people in my life for whom to pray -- people who helped lift me up these past few years when I felt like I could barely function. And, surely, I can find some peace in that.
So, I ask all of you who know me, or who think that you might have some experience with the things about which I write, to keep me in mind from time to time -- either through prayer or good thoughts.
Because what I would really like for my reality to become is ...a peaceful one. And I am not yet there.
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I will pray that you find peace with all of this.
ReplyDeleteI know the internal struggles that come along with living a life ruled by Autism...and it can be a beautiful one at times :)
I struggle too, and it is work to find the beauty and peace in it all.
Stay strong, and know you are not alone in this journey.
My best to you...
XOXO
Kary
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