Yo soy La Lay

adventures in family, faith, and Down syndrome

Get ready… get set…

Last Wednesday at 8:30 pm, well past my bedtime, I found myself sitting at the kitchen table, hastily drawing on posters and t-shirts for a rally to preserve Early Intervention funding in Illinois.

“Mag,” John quipped from across the room, “you were born to be an advocate.  You just needed a cause.”

This is true.FullSizeRender

Before I had Tessa, if asked what my hobbies were, I had no answer.  I’m not boring (I don’t think), just never had something that totally captured my interest.  Now, I have Down syndrome and special needs advocacy.  It’s an odd thing to qualify as a hobby, I suppose.  It’s not something that I do for fun necessarily.  In a way though, it’s something that I do because it feels productive and important and that is fun in my mind.

I recognize, of course, that this brand of advocacy is not for everyone.  Heaven knows that I’ve had enough conversations with enough people to know that some find us to be “takers, not makers” and unworthy of such silly requests as funding for basic therapies and a place in the classroom.

Ugh.  We’ll be addressing this later.

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In any case, all of this is important because tomorrow, October 1st, marks the beginning of Down Syndrome Awareness Month and the 31 for 21 Challenge.  Last year, we wrote about 31 things that we have learned since we had Tessa.  This year, we’re sharing 31 mostly simple ways that you can advocate for people with Down syndrome (or people with special needs in general).  I would never presume to tell you that just because this is my cause that it has to be yours, too.  But, if you should want to make a small difference in the lives of people like Tessa, in honor of this month or just because you want to, we are excited to share some ways to make a difference.

Thanks for joining us.

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To hear our radio interview at the Early Intervention rally last week… click here:  http://wuis.org/post/funding-worries-persist-parents-disabled-children 

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Helpless, hopeless

To sit and watch babies lose their Early Intervention therapies left and right is gutwrenchingly painful.

Do you hear me???!!?!

I cannot understand what our state has come to.  I cannot understand a world in which we cast aside those who need us the most, to be nothing but a political pawn in a game of war that we can only lose.

This is not a liberal or conservative issue.  It is about human rights.

I am well aware that a somewhat vocal minority believe that it has been my choice to have a child with special needs.  You could have aborted her, they say.  (Yes, they literally say that)  And then there would be no expense for therapy.  There would be no expense, no argument for Early Intervention.  She’s just an expense.  Not a human being.  There are people who cast us aside and feel that we are owed nothing because we can contribute nothing.

We are owed nothing.  I understand this.  But we contribute.

What world do we live in that civilized human beings will shun needy children?  What world do we live in that politicians continue to push down on the disabled and the hurt and the suffering and play with the very real power that they have to devastate an entire population?  What is going on with a world where not getting a lottery payout is national news, but thousands of children being abandoned is not even covered somewhere on page 12??

Family and friends shake their heads from afar… Oh, that’s a pity they say.  I’m so sorry to hear this, those (fill in derogatory term) politicians…  They get mad, and move on in their day…. We cannot.  We live waiting for the letter that terminates services.  We watch our dear friends lose their lifelines.  And it hurts us to know that we are alone in this battle.

Do something.

I implore you.

Don’t tell me that this is just temporary or that it’s just a publicity stunt.

Make a phone call.

Don’t tell me that money has to be cut somewhere, so just deal with it.

WE ARE TALKING ABOUT BABIES HERE.

Babies.  We are talking about babies.

Make a call.

#INEEDEI  

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It’s time for preschool, take one

I am a blubbering mess of tears.

My eldest child has been in day care since she was 7 weeks old, and yet, today, I am a wreck.

When did this little peanut get to be old enough for school??

 

I will tell you right now that I fully understand that my feelings are totally normal and that yes, she will do great at her new school with her new life, but still.  Preschool is kind of a Big Deal.

Being the mediocre mom that I am (Kidding!  Kind of.), I am letting her dad take the morning off to bring her to school for the first time.  I’ll be honest, I don’t think I can do it.  I never ever wanted to be a stay at home mom, but have still refused to do any drop-off at daycare.  Tomorrow’s preschool send-off is no different.

(Let’s not even talk about how my first payment bounced because of our stolen debit card and I had to interrupt John’s workout for him to rush over and pay our balance or they wouldn’t let her in.  Having it all together is not in my skill set right now.)

Tonight, I packed her little backpack with some extra clothes and her folder.  I packed her a healthy snack (pretzels…. and one pink frosted animal cracker because I’m just kind of like that) and I wrote her a little note on a napkin, which of course she can’t read, but I hope someone will help her.  And all morning, I’ll probably be completely unproductive and pray that my husband gets her there on time and that she remembers to tell people her name and doesn’t get in trouble for talking about poop.

Off on her new little adventure she goes.

Will someone pass me a Kleenex and some waterproof mascara?

  

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