Sunday, September 30, 2018

Just another Sunday morning...

Me with my 11 year old that has SMS

I don't know why I keep posting about life with SMS in a public forum where people haven't had the same experiences. It lays us bare and leaves us vulnerable. It can feel uncomfortable, opens us up to criticism, and well meaning comments that are made can make me feel worse. And yet... I still find myself posting and I'm not sure why. Perhaps it's that, after 11 years, I'm still trying to wrap my head around the ridiculousness that a tiny micro-deletion has wrought on our lives.

Sunday morning with a preteen and teenagers. We all just want to sleep in, minus one. That one wants to go downstairs naked. Underwear is finally put on, but she is incensed that we would require clothes as well. So she fights with herself for 10 minutes. First that she has to get dressed. Then she choses something but requires me to dress her. When I refuse because she's ELEVEN years old, she throws her dress, bangs on her brother's door, yells, and stomps around. A couple more minutes of fighting with herself and she is finally clothed, but she can't do up the buttons, so I help her. And then I drag myself out of bed because she can't be trusted alone downstairs.

Downstairs, she's so very proud of herself that she pours her own cereal. I allow it because I can't fight and she does need to learn independence. Empty cereal box is on the floor, the bag is across the kitchen. She goes to the table. Two more minutes and she happily comes back into the kitchen chewing on her chicken taco that was inexplicably left on the table overnight. I take it from her -panicked. I really hope she doesn't get sick. She is unhappy, but we avoid a meltdown over it. She wants to make another, we don't have the ingredients. She wants to eat a package of luncheon meat. She wants chips. I tell her to go eat her cereal. She eventually goes back to the table with much of what she was demanding.

I make my own breakfast and when she sees it? 

(This is the part where I just stop in wonder. The rest? The rest was just noise. This is the part that makes me want to walk away and not come back. This is the part that has me trying to pull myself together by writing it all down)

When she sees my breakfast she yells, "I DON'T WANT ANY FRENCH TOAST!!!!"

"I didn't offer you any french toast. I just made myself two pieces."

She yells some more. Then she throws her bowl of dry cereal on the floor, cereal flies everywhere. She moves into the next room and starts throwing her toys around. I send her to her room and after a couple minutes she finally goes. She continues to yell that she doesn't want any french toast. Husband comes out from the shower and assists.

This entire occurrence takes about five minutes, but the wind is knocked out of me. This was not fun. I hate yelling. I hate fighting. I hate chaos. I hate having to function first thing in the morning. 

Had she asked for some, I would have given her mine and made more. If she had asked for a bite, I would have given her a bite. If I had asked her if she wanted some, we likely would have had the same outcome.

I sit eating, not enjoying a bit of it. And I wonder why my stomach feels upset so much of the time. (I don't really, I know exactly why).

My teenage sons are still hiding in their rooms. I don't know if they're awake or asleep, but I don't blame them either way. I wouldn't come out if I had the choice. 

I hate this. I really, really, really hate this. I just want to eat my fucking breakfast in peace. It is, apparently too much to ask. When the kids were little, it was okay and I took these things in stride. It was expected that my coffee would be cold before I drank it and the breakfast would be a rushed through event. My kids have grown now and I feel that I've earned a breakfast that I can if not savour, at least enjoy. 

I love this child. She is amazing and funny and loving and lovable and all sorts of things that are wonderful. She brings happiness, joy and colour to our lives. She doesn't do these things on purpose and let's all just remember that she wouldn't be doing any of this if she could help it. She wants to be happy and normal, but her genetics are against her and it leaves us all breathless and tired.

We smile, but we're tired.


  1. My friend works with a little girl that has SMS and the stories she told us are so similar to yours. I can't imagine. You are fighting every day to find a balance that sounds elusive at best.

  2. Amanda,
    I haven't been on here in such a long time so, I haven't kept up with your blog posts. I just happened to check my google account and saw your post.
    I know these kiddos are individuals and everyone is different, but I cannot help to wonder (in fact, I know) if this will be my life too. I have a 15 year old with disruptive mood dysregulation disorder, and reading your post reminded me of how I feel with him, and I begin to hyperventilate when I think of having to struggle all over again as Hunter gets older.
    I can't help my mind to wonder what is to come in the future with Hunter and what SMS symptoms, but one thing I have come to learn from many of other families is that the meltdowns and behaviors just come with the territory.

    Thank you for sharing such raw and real feelings.