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| July 17, 2009--two days after diagnosis |
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| 2009 |
It's July 15--the anniversary of Derek's diagnosis. Three years ago today my life turned upside-down. Up until this date, I didn't even know what autism WAS. Now, I feel like I should have an honorary PhD in autism research. In 2009, my life did not revolve around therapy schedules and doctor appointments. I did not stare at the ceiling at night wondering what the future held for my little boy.
nostalgia [nɒˈstældʒə -dʒɪə]
n
1. a yearning for the return of past circumstances, events, etc.
2. the evocation of this emotion, as in a book, film, etc.
3. longing for home or family; homesickness
I don't long to go back to 2009. That was the worst year of life. No, I long instead for the days BEFORE the diagnosis, when Derek was an infant and I was like other stay-at-home moms. I cooked, I cleaned, I talked on the phone, and I had a semblance of a social life. Once upon a time I complained about things like being tired and the fact that both my boys were in diapers at the same time. I cringe now, knowing I actually complained about that stuff. Back then, as far as I knew, both of my boys were happy and healthy...and I took everything for granted.
I've always joked that when Derek was diagnosed, I went through the Looking Glass, like Alice in Wonderland. Everything changed. Autism brought life into sharp focus. Things that used to matter to me suddenly seemed unimportant. I lost friends. My career plans (to teach at a university) went out the window. My expectations for parenthood vanished. And I slowly became a different person.
Alice: But it's no use going back to yesterday, because I was a different person then.
I'm told that this is common; that when something traumatic happens your brain kind of "splits" and your life divides in two. Life before the event and life after. When I hear a date, I automatically think, "Had Derek been diagnosed by then or not?" There was a time before autism ruled 95% of my thoughts. I know there was. But my memories of those days are vague and fuzzy.
July 15, 2009 when my dreams fell apart, I had NO IDEA that in three years I would see the diagnosis as a blessing. Slowly, I have been able to rebuild NEW dreams--BETTER dreams. Autism has changed me. It has made me a better person. I take NOTHING for granted anymore. Every word that comes out of my son's mouth is a miracle. Every milestone he reaches, no matter how simple, is celebrated. And I am AWARE of things I never saw before. Not only do I see the world through Derek's eyes (I notice dew on grass, bugs on leaves, and birds in the sky.) I also see people with disabilities differently. I see parents fighting every day to make sure their children get the same chance to succeed that "typical" children do. I see how STRONG these parents are, and how proud they are of their children. I see the unconditional love in their eyes, and hope that other people see ME this way--as full of love and hope and pride. Yes, autism has changed me...life no longer revolves around me. It revolves around my children, and doing everything I can to make this journey easier for others. I now want to do something that MATTERS, and make a difference in the lives of others. I don't think it's a coincidence that God gave an autistic child to an artist...
Derek has allowed me to see things from a different perspective, and as an artist I think this is INVALUABLE. My life is unpredictable and strange, but I wouldn't have it any other way.
Alice: “If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”
I don't long to go back to 2009. That was the worst year of life. No, I long instead for the days BEFORE the diagnosis, when Derek was an infant and I was like other stay-at-home moms. I cooked, I cleaned, I talked on the phone, and I had a semblance of a social life. Once upon a time I complained about things like being tired and the fact that both my boys were in diapers at the same time. I cringe now, knowing I actually complained about that stuff. Back then, as far as I knew, both of my boys were happy and healthy...and I took everything for granted.
I've always joked that when Derek was diagnosed, I went through the Looking Glass, like Alice in Wonderland. Everything changed. Autism brought life into sharp focus. Things that used to matter to me suddenly seemed unimportant. I lost friends. My career plans (to teach at a university) went out the window. My expectations for parenthood vanished. And I slowly became a different person.
Alice: But it's no use going back to yesterday, because I was a different person then.
I'm told that this is common; that when something traumatic happens your brain kind of "splits" and your life divides in two. Life before the event and life after. When I hear a date, I automatically think, "Had Derek been diagnosed by then or not?" There was a time before autism ruled 95% of my thoughts. I know there was. But my memories of those days are vague and fuzzy.
July 15, 2009 when my dreams fell apart, I had NO IDEA that in three years I would see the diagnosis as a blessing. Slowly, I have been able to rebuild NEW dreams--BETTER dreams. Autism has changed me. It has made me a better person. I take NOTHING for granted anymore. Every word that comes out of my son's mouth is a miracle. Every milestone he reaches, no matter how simple, is celebrated. And I am AWARE of things I never saw before. Not only do I see the world through Derek's eyes (I notice dew on grass, bugs on leaves, and birds in the sky.) I also see people with disabilities differently. I see parents fighting every day to make sure their children get the same chance to succeed that "typical" children do. I see how STRONG these parents are, and how proud they are of their children. I see the unconditional love in their eyes, and hope that other people see ME this way--as full of love and hope and pride. Yes, autism has changed me...life no longer revolves around me. It revolves around my children, and doing everything I can to make this journey easier for others. I now want to do something that MATTERS, and make a difference in the lives of others. I don't think it's a coincidence that God gave an autistic child to an artist...
Derek has allowed me to see things from a different perspective, and as an artist I think this is INVALUABLE. My life is unpredictable and strange, but I wouldn't have it any other way.
Alice: “If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”
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| Then and now... |
The picture on the left was taken at Lake McConaughy July 17, 2009 (two days after Derek's diagnosis). I didn't realize the significance of the picture at the time it was taken. It now hangs on a wall in my house, in a frame says "The Road Ahead Lies Within." It reminds me daily just how far my son and I have come on this journey.
The picture on the right was snapped by one of Derek's therapists on April 1, 2012. Derek wanted to go running with me. In less than 3 years, my little boy has grown THAT MUCH. I wish you could see in the picture how much I have changed and grown as well...but I guess my changes are on the inside.
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| July 15, 2009 |
So glad you are in a place where you can see the positives again. The diagnosis day for us is a tough oxymoron. I was in a place where I didn't care what they called it as long as James finally got the help he so desperately needed. Our Dday is 12/20/06. 5+ years down the path now, he continues to amaze us everyday.
ReplyDeleteYou are awesome. I love what your doing I love the knowledge you have and I love how you are always keyboard away from answering questions and calming down.
ReplyDeleteYour amazing thx for sharing
ReplyDeleteI love your story, thank you for sharing and opening so much. My son was diagnosed with Epilepsy Jan 21, 2010 (on his 8th birthday during a hospital stay) after years of misdiagnoses. As scary as "Epilepsy" was (it was the unknown, it had never been discussed or considered, I didn't know what it was) I felt a confusing relief of finally knowing why nothing worked for my son before. I remember a weight being lifted and I saw things differently than I ever did before. Life for us too has been divided, before the diagnoses and after. But what a life changing moment for our family.
ReplyDeleteI find strength with sharing and meeting other families because we are not "average" parents of average kids. We are so much more than that. I think that is why we lose friends and contact with family. They look at us thinking "i couldn't do that" so they detach from the reminder they see in the wrong light.
Just remember, YOU ARE AMAZING! YOUR KIDS ARE AMAZING!
Thank you...I wondered if I was the only crazy person who remembered the actual date of diagnosis. I guess not. :) It's kind of reassuring to know I'm not alone in this. (((HUGS))) to all of you.
ReplyDelete