We’re already failing at summer vacation

22 Jun

It’s impressive really, how quickly our summer is going down the proverbial toilet.  Maura’s been officially out of school for an hour and we’ve spent most of it in a screaming battle of wills over screen time.

I’m thinking this summer, we may go Amish.  But then I won’t be able to get onto my computer.  And the teens would howl, which will make the dogs howl….

I may need a new plan.

Maura graduated from fifth grade on Friday.  Technically, she didn’t have to go to the “all of two hours” last day today.  But she did.  Just so I could savor those last quiet moments of peace.  Her teacher told me how another teacher asked if any of her students would show up – Maura’s teacher stated “Oh, EVERY ONE will be there.”  I said “Dang skippy!” We both laughed.  We both get it.

Also, after this past weekend, I needed that two hours of final serenity.  See, Saturday, I woke up and ran to the store.  I got milk and doughnuts and coffee.  I came home all Good Mom, and went to present Maura with a pink frosted doughnut.  She was thrilled to see said pink frosted doughnut.  I stared in horror at the puddle of chopped hair that surrounded her, and the scissors tossed casually to the side. I spent the rest of the day finding little locks of hair here and there as they fell off her head.

The good news is, the girl has such obnoxiously thick hair, you can barely tell.  The front of her hair is uneven though.

barely noticeable, really...

barely noticeable, really…

Then Sunday, I left the girls watching some bad Wizard of Oz reboot while I tried to read a book.  Only to hear the big sister yell “MOM!  MAURA’S BLEEDING!”

“From where?” I yelled as I ran to meet them.

“Her fingers!”

Somehow, Maura found a piece of broken glass.  I don’t know where.  I don’t know how.  She just found it, and held it, and sliced her fingers a little.  Her sister was more upset than she was by it all.  I washed off the hand, bandaged the finger, then realized that on her way up from the family room, Maura bled on the carpet, walls, hand rail…

It’s amazing how kids with innocent wounds can make a place look like a crime scene.

So yeah, this morning, I shoved that girl on the bus for that whole last two hours, so I could brace myself for summer.  Because we’re already failing.  And we have so much more to go.

I’ll be in the corner, rocking, if you need me.


My daughter’s contribution to society

15 Jun

Every so often, something will pop up on the internet about the disabled being a burden to society, and it’s a bit like “Oh is it that time already?” The usual feelings wash through – anger, showing the internet article one or both of my middle fingers, general annoyance, and that slight tinge of guilt of “Well…my daughter is sort of a burden.”

Except she’s not. No more than anyone else really.

Yet it happens all the time.  Something will come up and I’m reminded how my child is a burden to our family, to the education system, to society.  She has been put squarely in the category of “Will not contribute to society.” She’s not a good investment, she won’t find the cure for cancer, we’ll be supporting her for the rest of her life. She is a leech that has nothing to give back to those around her.

And all that is total bullshit.

When I was a child, I got a book that became a favorite – “The Country Bunny and the Little Gold Shoes“.  I loved it enough that when I spotted it at the store, I bought it for my children. It is a tale of a little girl bunny who wanted to grow up to be an Easter Bunny (as there were several of them who made Easter deliveries.)  She was told that she couldn’t possibly ever be an Easter Bunny because she wasn’t the right type of rabbit, and she was a girl, who then became a mother of 21 little bunnies. (Spoiler alert – she becomes a great Easter Bunny.)

I was always enchanted by how she found tasks for all 21 of her little fuzzy off-spring.  She paired them up, two by two, to perform tasks that would help out the entire family.  So two cooked, two dusted, two made all the beds.  Two painted pictures, two made music, two danced – because the arts are important.  And one…one pulled out the mama bunny’s chair every night.

Every bunny had something they could do that contributed to the family’s well-being, even if all they did was pull out a chair for their mother, so she could sit down after a long day.  No task was deemed “more important” than another. Everyone contributed their talents, and all contributions were appreciated.

In our household society, we all contribute different things.  Maura’s contributions are usually the least helpful in one way, but in other ways, they’re priceless.  She brings out the best in her siblings and her parents.  She brings out the best in so many people.  She brings joy and laughter to our lives, as well as reminders to enjoy the simpler things in life.  Most of all, she gives love unconditionally.  As I remind her siblings, no one will love you the way Maura loves you.

If you tally up facts and numbers and all sorts of tangible things, no, Maura doesn’t contribute much to society.  Eventually, we might even get state aide for her and then she can be a total drain on your tax dollars!

But if you look at the love she gives, the smiles she causes, the experiences she causes – then her contribution to life is huge.

Let’s not fool ourselves – anyone can become disabled or have a disabled child.  ANY ONE.  Wouldn’t it be better to treat those with disabilities as worthy humans rather than calling them burdens?  Because the next “burden to society” may be you or your loved one.  My child is a worthy human being. You are too. Let’s just go with that.






Art lessons

12 Jun

I love art.  I’m sure that has nothing to do with growing up with an artist mom who dragged us to the Art Institute of Chicago on free days or had us help her man her station at art fairs as kids, or the fact that she had this room full of art supplies, and everything hanging on our walls was something she created.

I’d give tours as a kid to my friends.  “My mom made that..and that…and that…”

But I had decided that I wasn’t any good at art.  I was good at writing, so that’s where my artistic streak was channeled.  Until recently.

Last year, I went to one of those “Art and Sip” things with a friend, where we painted snowman pictures.  By the end of it, I looked at my snowman and thought “Hey, I don’t suck at this!  And it’s fun!”

$129.53 worth of painting supplies later, I had just enough to give myself a fair shot at this.

Being the overly-ambitious person that I am, I decided to try to recreate things for Maura, because in hanging a couple pictures in Maura’s room, she started collecting more things to hang on her wall. (And I have to say, discovering her love of artwork gets me all giddy!)

I decided to copy the moon from the show “Ruby Gloom” – a favorite of Maura’s.  And it came out pretty darn well.  Maura kept eyeing my progress, and when it was done and dry, grabbed it and set it on a shelf in her room until I was able to hang it on the wall.



Even better?  I discovered that painting was, in its way, calming for me.  Therapeutic even.  Just dabbing paint onto canvas, playing with the colors, it was fun.

Of course, because I love Maura and am a better mom than anyone, I decided to make her another painting.  This time, I got more ambitious and decided to copy Rapunzel’s painting from “Tangled” – another of Maura’s favorite movies.  Again, Maura hovered over my shoulder, figuring out what I was doing.  “Hairbrush!”  (Yes, that’s her word for “Tangled” – makes complete sense.)  When done, she wanted that up on the wall as well.

This one wasn’t as relaxing as the first, because I was afraid of screwing up near the end.  But I didn’t.  I got it right enough. And it totally didn’t suck either!

"Tangled" still that I worked off of

“Tangled” still that I worked off of

My decent knock-off version

My decent knock-off version

And then, I let Maura pick out a canvas print of “Frozen” – because I know my limits. And we hung them all on her wall in a grouping.  And the girl was happy, and for that moment, I was the best mom ever.

Maura's artwork corner

Maura’s artwork corner

Mothering Maura, I don’t spend a lot of time thinking about all she can’t do, all we won’t share, because honestly, it would be depressing.  Instead, I cherish these moments in time, where our interests overlap, and try to make the most of them.  And in total Life-with-Maura style, I have learned something new about myself.

And who knows?  Maybe I’ll have a future in art forgery! That pays well I hear.



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