What I am Missing….

be2e4f71217921744e543f92401d9878I spend a lot of time thinking about all the things I’ve missed with Cooper. I know…he doesn’t know…he’s happy…he’s not missing out…blah, blah, blah.

Those three things top my list of ‘What not to say to an Autism mom.’

But I know. I see it everyday in Sawyer. I know what I am missing. It’s a whole life. It’s language and emotion and socialization and laughter and interaction. I am missing it all.

It comes in waves.

Sawyer and I were looking through his baby book last night. We laughed and laughed at how cute he was. And pudgy. And he looked at my belly pics, and ultrasound pics, and we giggled. I watched the wheels in his brain start to turn when I told him he lived in my tummy. I watched him pour through the pictures and pages and cards and baby bracelets. You name it… I kept it. He was obsessed with it. He wanted to hold it and had to wrestle it out of his cute little hands.

That book is so precious to me.

Then he asked me where Cooper’s book was. Why didn’t Cooper have a book? He was all concerned that I didn’t have one for his brother. So we walked into Cooper’s room together and grabbed it out of the closet. And sat down. Sawyer climbed up on my lap and started to talk about how much bigger Cooper’s book was then his. I had to explain that Cooper is older and has been around longer.

We opened it up to the first page and Sawyer started laughing at how cute is brother was.

I felt my stomach drop. This little boy wants to sit with me and talk about his brother’s baby pictures. And I doubt Cooper even knows we are here..

I looked at the first few pictures and at how happy we were. Jamie and I were living in Two Harbors, a cute house, we had two puppies, and a baby on the way. We were so excited.

The next page showed Cooper all covered in goo just minutes after being born. His head was a serious cone shape. He looked so full of anxiety. At day 1 the anxiety was there.

Sawyer loved every picture more than the one before. And seriously argued over whether they were him or his brother. My heart was melting over how cute he was being. So curious.

First baths, food, playing outside, sliding, first birthday. It was all in there.

And then it just ended abruptly. I had a few pictures from after age one but not many. I laughed at the staged pictures from his second Halloween and birthday. Cooper wouldn’t trick or treat or wear a costume at Halloween so I took pictures after and pretended that we went. And his 2nd birthday was even worse. Also a staged picture.

And the tears started. I was reading some of the things I wrote and I remember exactly what I was feeling when I wrote them. At 11 months Cooper stopped eating all but a few foods. On Thanksgiving he ate everything. By his birthday in December he was down to 2 or 3 foods. My entry said…”You stopped eating all foods today Cooper. You are such a stinker. Mommy is going to lose her mind!”

When Cooper was a year or so I cut down from 40 hours a week to 32 hours and stayed home on Wednesday’s. Cooper wasn’t sleeping and I seriously thought I was losing it. I was sad and knew something was off with him but I was still in my version of denial. I wrote, “Mommy now has Wednesdays with you Cooper! We are in a new house and living in the country and we are going to have so much fun this summer. You love it here!”

That was a lie. Cooper had no idea where we lived. He didn’t play with me or interact with me. And to be completely truthful I used to get huge loads of anxiety at the thought of spending long days with Cooper. He hadn’t started watching TV yet, didn’t play any toys, didn’t do any activities, and whined all day. Zero communication. I was so lost. I spent time on pinterest trying to figure out games to play and activities to do. It never worked.

Shaving cream sensory activities, painting with potatoes, magnets. You name it. I tried it. The desperate attempts from an even desperate mother.

I turned to the last page I had wrote on. Right between age 2 and 3.

Learn to say my ABC’s. Sing a song. Make a friend. Say I love you.

And I was done. I cried and cried and cried. I took that damn book and shoved it in the way back of Cooper’s closet. I even covered it with a box of puzzles for good measure.

Sawyer kept asking me what was wrong. Why are you sad mommy? He even offered me an Advil.

Part of me wants to go back to that blissful pre-autism happiness. Part of me never wants to do it again.

I find it odd how I can be happy and so sad at the same time.

Sawyer is 2.5 years old and has surpassed his brother in every single milestone. I have a growing, thriving boy that fills my heart with so much constant joy.

And I have a son who I can’t reach. No matter what I do. I can make him comfortable. I can feed him. And bath him. Of course love him. Change his diaper. Push him in a swing. Change the channel on the TV and fix the iPad when he accidently turns the Wi-Fi off. I can even steal a hug when he first wakes up in the morning.

But, that is about it.

I try not to think too much about what I am missing. If I let it creep in my mind and heart I struggle to climb out. Ain’t nobody got time for that nonsense.

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4 thoughts on “What I am Missing….

  1. I find myself having a hard time looking at baby pictures too. Autism didn’t creep in as a possibility until 18 months when the words were not there and name response was diminishing. My son was diagnosed at 2 1/2. I can’t hardly remember what my life was like pre-diagnosis and not having the constant worry in my head. Some days are definitely better than others. No advice, just understanding and letting you know you’re not alone. Love your blog.

  2. 10 1/2 years into this autism journey and I still cry every time I look through Jared’s baby book. All the “achievements” stopped for him around 18 months. I hate stupid autism and what it robs us all of. Lots of hugs!

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