Perfection Shattered

unnamedWhen your brother was 8 months old, we decided to start trying for a second child. I knew the moment I was pregnant with you. I just felt pregnant. I felt feverish. There was a slight cloudiness over my brain that fogged everything I did. I knew. I took tests daily until one finally came up faintly positive just 9 days after conception.

I was pregnant! On our first try.

The pregnancy was uneventful. To be perfectly honest, I had so few symptoms that half of the time I didn’t even remember I was pregnant. I felt this pit in my soul that I would lose the pregnancy, as I had with my first pregnancy before your brother was born. I just always felt something was wrong. Almost an impending doom.

But you grew and you were healthy and you were born post term, but as perfect as can be. They placed you in my arms and I cried. I held you, smiled at you, and named you after my father, who left this world when I was seven, and your paternal grandfather, who had departed just two years earlier.

My perfect pregnancy turned into a perfect newborn. You latched so well even from the first day. You nursed like a champ. Your brother never nursed as well as you did. It was very stressful and had caused me PPD and suicidal thoughts. Your newborn period was so peaceful. You nursed without issue and slept through the night even at a few days of life. We called you Powerball because you were the most perfect baby we could have asked for.

Everyone loved my little Bear. I remember one of my friends saying, “Big bear is sweet, but little Bear… he’s just the nicest, sweetest little boy in the world. He’s so special.” I felt so proud to be raising such a wonderful little boy.

You didn’t like the bottle. You wouldn’t swallow with it. The milk just dribbled out. We tried preemie nipples and you struggled with them as well. Your weight slowly went down. At one point, you were in the 0 percentile. You stayed there for a long time. You had failed the newborn hearing test. You weren’t eating because you were dizzy, they said. You weren’t looking at me when I said your name at nine months because of the fluid in the ears. Everyone blamed your ears. Always your ears.

We finally got an appointment with an ENT. You weren’t talking yet. You weren’t walking or even cruising. You crawled late. It was your ears. Always your ears.

I distinctly remember leaving your 6 month visit and shouting your name at you and you didn’t respond. I was terrified that you were deaf.

Today I wish you were deaf. I know what the prognosis for deaf is. I know what to expect with deafness. I know that your life would be completely normal but without sound if you were deaf.

I don’t know what your life will be now.

I did everything right for you, my little bear. I had you evaluated by Early Intervention twice. The first time, they said you were fine. The second time, they dropped the ball and you didn’t get therapy for a full four months. Within a month, your SLP said that she suspected autism and you were in the neurologist’s office the following Monday because of a cancellation.

The doctor didn’t sugar coat it at all. He said you weren’t making eye contact with me. I had never realized it. You didn’t respond to your name at all during the visit. He said your playing isn’t actually playing with others – it’s getting others to entertain you. My entire view of you, my perfect little angel, shifted.

A friend who works with autistic children told me, “He’s still the same child today that he was yesterday.”

You say that, and I know you mean that, but as a mother of an autistic child, he isn’t the same child today that he was yesterday.

Yesterday when he pushed the button on his Little People school to get music and then started bouncing, he was dancing. Today he’s doing a repetitive behavior.

Yesterday when he put puzzle pieces in my hand because he couldn’t figure it out, it was an adorable way of asking for help. Today he’s using me as a tool instead of communicating.

Yesterday when he cried because I left him at school, he had separation anxiety. Today he just has anxiety.

Yesterday he was perfect. Today he has autism.

Today I have to pick up the pieces of my shattered heart and try to put them back together and move on with this new hand my family has been dealt. And I have to do it while my older son, who may also be on the spectrum, asks me, “Mama… why are you crying?”

The road ahead is long, but I must prepare for it. We all must prepared for it.

 

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Author: goldilocksbabybear

A mother dealing with the struggles of finding out her child is autistic.

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