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"That doesn't soften the ache we feel when reality sets back in..."


This is another essay I wrote a while back- nearly a year ago. I published it on a blog that nobody read because while the writer in me wanted to share it with strangers, I couldn't face having people I actually knew know that I was feeling this way. At the time, trying to be happy and smiley and funny about Autism was my goal. If I could laugh at it, it couldn't be that serious. It was such a facade because PJ's diagnosis was too new, too raw to have a comfort level with. So while I wanted to be funnyhappysnarky girl, I was really darktwistysad girl. I'm not either of those girls now- I like to think that with all of PJ's growth and progress came a bit of growth and progress for me, too.
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I had dreamed of being a mother for as long as I can remember. I wasn’t exactly a girlie-girl, so when my friends started getting married, I didn’t feel even a blink of jealousy, but oh. When my friends started having babies, each sweet face I snuggled and squealed over left a bitty little dent in my heart. My ovaries ached at each wasted egg. Pete and I became engaged and we eagerly planned the time that we would start our family.

So, of course, after a lifetime of planning the arrival of my first child, my pregnancy was completely unexpected- the result of my jumping Pete’s bones one night (March 10th, 2009!) after he did something so kind for his goddaughter that it made him even hotter in its kindness. True story! Seeing two pink lines when I really expected one sent my inner control freak into a tailspin, but after a day of shock, I settled into the happiest time of my life. I loved each doctors visit, loved maternity clothes, loved the shape of my growing belly. I wasn’t one of those cute pregnant girls; I carried high and low somehow. I wasn’t cute, but holy Christ, I was so happy! Two and a half weeks before my due date, I went into labor in the middle of eating dinner and watching Glee! A few hours later I was chickening out of natural childbirth (I got my epidural at 9cm. I’m such a pussy.) and a little over an hour after that, my son was in my arms. Peter Joseph, Jr had arrived and life was going to be new and wonderful!

Motherhood…hell, parenthood in general isn’t always easy. But my boy was an amazing infant, he slept and ate well and somehow made the things that everyone had said were hard so, so easy. I could hardly remember what it was like before this tiny blonde dude has been in our lives. Pete and I both fell deeply, madly, and completely in love.

PJ started to grow into toddlerhood and we could see that his development wasn’t going as it should have been. On the surface, we kept our heads and did all of the right things- spoke with our pediatrician, utilized Early Intervention, made appointments to see developmental specialists, audiologists, geneticists. And most of the time, we felt okay. We felt confident that we were doing right by our son and hopeful that things would improve.

It was only after a bad day, when a random tantrum would lodge itself in my heart or I would notice one of the many “red flags” that were noted in his Early Intervention evaluation, that I would fall apart. I wondered why this was happening to us. I spit fire at myself for sometimes missing a prenatal vitamin or drinking the occasional coffee while I was pregnant. I raged at myself for getting the epidural. I wondered if something could have happened during the surgery to correct his hypospadias that somehow deprived him of oxygen. I cursed and shamed myself for not being able to do what women have been doing for a thousand years- gestating a healthy human. I looked at my son, my beautiful, funny, snuggly son, and wondered where the hell I went wrong.

When I wasn’t slamming myself, I aimed my vitriol at others. I had worked in an HIV clinic, for God’s sake, and had seen women who had AIDS manage to birth a healthy baby. “Teen Mom” was filled with moronic high-schoolers who pushed out bright, camera-ready babies. I knew people who couldn’t find their way out of a wet paper bag who had children on the honor roll. Cheerful posts on Facebook about the accomplishments of other people’s toddlers broke my heart. What would I write? I couldn’t write about what was happening to us, and I hated the breezy updates from people who could. And then I hated myself for feeling that way.

It was ugly, folks. It was dark and it was ugly and oh, God. I hated myself for feeling like that. Worrying about the amount of eye contact my son made wasn’t an issue because I couldn’t even look him in the eye. I was afraid that he might somehow see all of those horrible thoughts and then he really wouldn’t want to look at me.

I wish to God I had talked to someone about how I was feeling. Of course, Pete and I talked often about our fears and plans and hopes for our son, and I have a few amazing, wonderful, giving friends that I leaned on. But, I kept all of that ugly inside out of shame, and I wish I hadn’t. I wish I had even blogged about it because giving it some air might have helped. Even though I kept it bottled up, PJ improved every single day and so did I. Autism isn't such a dark place for me. I can even laugh about some things now, and that above all else is a good sign for me!

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I'm not anywhere near this place now. Pete, PJ and I have grown so much as a family, and our outlook on everything has changed exponentially. Not to say that we don't have our moments, but we're not comparing ourselves and our son to every other family and their children. We focus on PJ, and only compare his development and milestones to the development and milestones he hit the day before, and on the days we don't, we pick back up the next. We have learned so much in this first year of PJ's autism diagnosis, and I am both fearful of and excited for the years to come. Raising this Boy of ours is a huge, amazing, life-changing honor, and we hope to live up to the responsibility.









Comments

It's so hard to let your ugly out. I'm sad that you didn't then, I think it would have provided some relief. I'm glad you can do it in hindsight so eloquently now. Someone will read this and know they're not alone.
Marta said…
I find that the things that I am most scared to write are the things that ring the truest for others. The words we're all afraid to say, but need to. The words we need to hear and know we're not alone. I've never been what you've been through, but I can still feel the truth of your words and the pain and anger that was there.

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{...stream of consciousness}

Today is April 2nd, World Autism Awareness Day, and it is Autism Awareness Month.

The month begins on the heels of news from the Centers for Disease Control and Prevention that Autism is on the rise. 1 in 68 children in the areas followed by the CDC are identified as having an Autism Spectrum Disorder, up from 1 in 88 just a few years ago. In New Jersey, the numbers are far higher then the national average at 1 in 45. 

You can view a summary of the latest CDC report here, but there are two points of the report that stood out to me:
Less than half (44%) of children identified with ASD were evaluated for developmental concerns by the time they were 3 years old.Most children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2.Content source: National Center on Birth Defects and Developmental Disabilities
PJ was diagnosed with Autism shortly after his second birthday. Pete and I had already utilized an e…