living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Run Away

I wish there was money in savings to head on a vacation.  Nothing extraordinary, a few days in Disney World would be just about right.  Really, I  just want to get away.  Two years ago when we went, there was some whining spells and such, but really, it was a nice break from life.  Break from life!  That’s what I’m really after.  Everyone was happy, and we woke up each day with the excitement of knowing that, that day, was going to hold something new.  The shiny kind of new, a new/exciting/marvelous “something”.   Sometimes just getting away form your surroundings is enough of a refreshment to keep you plowing through life.

A vacation is plausible, a vacation is a realistic wish because what I would really like to travel far, far away from is reality.  Well, my reality anyway.  I want to go somewhere where babies don’t die, Grandmothers who are the epitome of love and who make the world a more beautiful place are ever aging and never leaving, where there is no Autism and the fear that it’s struck our family twice doesn’t exist.  Where I’m always doing and saying the things that will form my children into the kind of adults I wish I could be.

Two nights ago I couldn’t hold back tears any longer. It was 1:30am and all I could do was cry.  I got out of bed and drew a bath.  I can’t remember if the day was bad, or not, likely it was ordinary, meaning I was tired and the kids were needy.  I remember feeling for the millionth time that I am not the one to raise an Autistic son, that there is not enough in me to do it right.  Then somewhere in the night I remembered how my Babby used to hold my face cupped in her two hands, look up at me (she was a tiny person), and say:  “Erron you are a beautiful mother, you have patience, and your kids are so blessed to have a mother who is able to guide them with such love and patience”, and suddenly I was sadder because, surely now, from heaven she could see how untrue that was.  How when we are alone my patience is thin, how I fail when Elijah screams, or eats some bit of crap off the floor, or when he won’t stop running on the furniture, humming, or spinning. How I fail to be patient when Petra refuses to eat lunch and then 12 minutes later asks for a snack, and when the answer is no asks for a drink then.  How Natalia’s whinny baby bit makes me want to scream and how Micah…well I’ll get to Micah in a bit.

I will likely never get to take a break from Autism, but worst of all, neither will Elijah.  I want a recovery for him, so badly.  I want to believe that he can be normal.  Why can’t my kid be one of the ones who comes out of it? I want to try everything, and yet I’m afraid to.  What if we try everything and we can’t fix him? What if the age where one treatment would have worked is past us?  I have no idea what the future will bring, but I’m afraid it’s going to get harder, and we’ll just keep trying everything.

And there’s a terrible fear within me, that I may have to go through it all over again with this new baby.  The Lord may know the scale of my life better than I, but I don’t know if I can right the scale with another Autistic baby.  I spend most of my pregnancy aware of whether I’m nauseous enough, is the baby moving, always a flicker of fear, but always watching, wondering if  my baby is normal, hitting milestones, is just a way of prolonging my state of on the edge.

I feel like I haven’t taken a deep breath in years.

I think it has happened twice.  I don’t know.  For all of you who may have wondered if having another boy scares me.  It does, not just a little, it has me terrified.  I feel like it’s already begun.  He is a baby of extreme emotions very happy and very angry.  Most people see the very happy baby, because there are enough arms to always be holding him.  He needs to be held all the time, putting him down means he trashes about or cries, and yet, he pushes away and pinches when you are holding him.  He flexes all the time trowing his head back and arching his back as he screams.  He likes to bury is head into things.  He is all about vestibular movement.  He doesn’t sleep, good God, he doesn’t sleep.  He gets 9 or 10 hours at night often waking 4 or more times, never less than 3, and naps once or twice a day, sometimes only for 45mins, sometimes, on good days, longer 2-3 hours, but a good nap often means no second nap.  A baby his age should sleep 16 to 18 hours.

Everyday I worry.  Everyday I beg whoever is listening, God, the universe, whoever, not to burden me with 2 spectrum kids, but we all know it doesn’t work that way. We’re not all dealt a equal portion of hardship, so we could be the ones who have two.

Maybe I’m over analyzing, maybe I’m seeing things that aren’t there because I’m afraid.  Maybe I am.  I hope I am.  I hope it’s all craziness and fear.  I hope I look back, and think ‘I wish I had enjoyed his infancy more, instead of  investing so much fear into it’, because if I have to think ‘I wish I enjoyed his infancy more because I know things are gonna be this hard forever’ I don’t know how I’ll press forward without falling apart, without wanting to run away.

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Comments on: "Run Away" (1)

  1. Oh Erron. Isn’t parenthood the hardest job, with the worst pay and few benefits. I think it is every parent’s worse fear that they are not doing right by their children, and that the actions they take will scar them forever.
    The only thing we can do is be the best we can be in the moment. And if that moment calls for TV, while you surf the web, that is what it is. And the kids will be none the wiser that Mommy needed a break; they will just know that TV is awesome.
    I hope today is better for you, and know that there a lot of people who think you are doing great, and wish your family nothing but the best.

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