Yo soy La Lay

adventures in family, faith, and Down syndrome

Crabuary

It has been some time, hasn’t it?

The time of year has been deemed “Crabuary” in our house.  January and February blur together in one gray, cold and damp haze.

I get busy at work during Crabuary. Annual summatives are due, last minute evals, kids trying to sneak in a drop in the new semester, course selection and we’re talking about next year already.

Still, we’ve managed to keep our weekends light and fun.  Nights are quiet.  The kids are growing.  Tessa is exploding with words, new ones sprouting every day.  I have been told her “receptive” language is weaker… but that seems to run in the family.

I can think of quite a few family members, actually, with weak receptive language skills.  Myself  included. 😜

Ellie is reading.  (Lots!)  She has announced that she will not be going to kindergarten in the fall, opting instead to carry on in preschool for as long as she feels like it.

Clearly, we’ll have to work on this.

Until I get time for more detail, here, enjoy some cuteness…


  

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The Church Fiasco 

I will admit that I work too hard to keep it all together when I’m in public with the family.  Some days are just hard.  Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.

I can’t help it, so y’all are going to have to forgive me.

Now, enter Down syndrome.

Let me be very clear – my little sweetheart does not act out because she has Ds.  She acts out because she is two.  And it’s normal.  Some days are pretty rough.

Aren’t they for all of us?

But this is the perception that I find myself fighting, which has now intensified my need to keep it all together.  I know it’s not really about Down syndrome.  I just really want everyone else to believe me.

Church Sunday started off well enough.  Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores).  Then, it got a little hairy.

We sit in the pew directly in front of our Praise Team.  John was playing, so it was just me in the pew with the girls.  Ellie was, for once, an angel.  But Tessa decided that it was time to be free.

During the sermon, it started with crawling back and forth.  I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on.  When it is “on”, it vibrates.  She loves it.  It’s very soothing.

  
She threw it.

She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.

I about died.

The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them.  Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way.  Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15)  and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.

And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”

Because it’s not about the Down syndrome.  It’s just my kid, being naughty, as kids do.  I just want people to see that.

 

In case you wondered, we got the Z Vibe back after church ended.  The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to.  Thank God for that.

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