Yo soy La Lay

adventures in family, faith, and Down syndrome

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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A political rant – and I’m not apologizing.

I now live in a state where the governor believes that providing Early Intervention services for infants and toddlers who are less than 50% delayed is “financial recklessness.”

Early Intervention has been my lifeline, my saving grace, my hope that if we can get her started on the right path, she can accomplish her dreams. And though the path will be challenging, there has been support and structure and light for our journey.

However, my child is not more than 50% delayed.

In the proposed budget, presented today by our newly elected governor, my child would lose her therapy services.

My child, who has just mastered crawling on hands and knees while her peers are starting to walk.

My child, who has just barely begun to sip from a straw while her peers are long off the bottle.

My child, who is miles from any words, while her peers have begun saying Mama and Daddy and other first words for weeks.

My child, who ate pudding on her first birthday because she cannot manage solids while her peers fed themselves their own birthday cake.

My child, who has come so far and has worked tirelessly for every. single. milestone.

I literally feel as though I am going to throw up.

Life is not fair. I have never expected it to be. But I’m angry. Livid. Because this isn’t just about me and my family – it is about society and values and about being a human being.

I want out. Out of this state. I want to throw a tantrum and yell and kick and scream. And then I want to strap Tessa in her car seat and drive on over to the governor’s mansion and interrupt his lovely dinner to ask him a few direct questions. When did we decide that it is just fine not to take care of our own?? When did we decide that it is dandy to cut from our most vulnerable of citizens who live in families (like mine) that otherwise cannot afford to provide them with the therapy services that they need?? Why is that okay with ANYBODY??

My direct statement to my family and friends who voted this man into office (because I know you are many) – is that I am begging and pleading for your support in fighting this proposal. It is not what is best for our children. It is not what is best for our state. You elected him into office and he is now dismantling every support that my family relies on – I urge you, please contact your representatives and ask them to fight these changes to Early Intervention. This cannot move forward.

End rant. For now.

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