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

Why it’s all my fault

When your baby dies you spend the first months torturing yourself with trying to figure out what you did, so you can prevent it next time, so you’ll know why you hurt so much, so you can spend the rest of your life knowing it was you, that it was something, the answer in its self holds some magical key to knowing, and knowing is better than wondering.

When your son has Autism, you deny it at first.  You think ah, it’s mild, we’ll get him some therapy, he’ll still catch up.  Then you work at understanding a condition that no one understands, but has theories abound.  As he grows, and your other children speak more, interact more, play normally more, the more his differences shine, the more you want to fix it.  But fixing it requires reading about it, and reading about it means your gonna feel like crap.  Because you’ll read dozens (hundreds?) of articles, most of which will tell you of what the author thinks is a contributing factor to the cause of Autism.

Bring on the GUILT.

If I thought my imagination could come up with ways I caused this, it has nothing on the doctors, psychologists, and therapists who have data to support their theories.  There’s nothing like reading about how you screwed up your kid, and they have the data to prove it.  Don’t get me wrong, none of theses studies are written with one finger pointed at the parents, but it’s hard not to feel as though it’s all your fault.

How you might be wondering is it all my fault?  Today Kyle came to me about a study that shows kids with parents who have gluten sensitivities are x times more likely to have an Autistic kid.  Because of poor nutrient absorption while pregnant, and then passing along that sensitivity to the baby makes for poor nutrient absorption, which then has neurological implications.  Great one more thing.

So here’s the list

Elijah is a twin, I chose to take clomid to fill empty arms

He was born prematurely

He was induced, an unnecessary induction,  I went ahead and approved out of fear

I had over a dozen Ultrasounds

He had a traumatic birth

He was under 6 pounds

He had jaundice

I feed him all kinds of dairy, gluten, and artificial colours for three years

I immunized him not only  to Canadian standard, but then had him poked some more to update him to American standards. My gut told me not to, but Kyle is pro immunizations, so I conceded.  I have a memory of Elijah’s first birthday where I was asked if he was talking yet, I answered not really, and just after I said that, he said “all done” (he was eating in his high chair) The asker said “I would call that talking.”  He was in fact uttering a few small words a few days latter we immunized and over time he lost his language.

I am gluten sensitive

Theses are just the big ones I won’t go into the little things that plague me, like letting him eat dirt, or if  I may have rocked him to hard.  The more the experts learn, the more they explore Autism, the better the outcomes are for Elijah, or for future prevention, so I encourage it, not only on a vocal level, but financially as well.  Elijah deserves the best, and other kids not yet born deserve some form of  prevention.

All these reasons, all these things, leave me feeling as though I didn’t do my best to protect him.

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.

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Comments on: "Why it’s all my fault" (5)

  1. Oh Erron! Big hugs to you.

    There’s nothing in the world quite like Mommy Guilt. It doesn’t matter if the trigger is rational or not when the guilt sets in, and you’ve had enough tragedy in your parenting life that it must be that much more difficult.

    I know it won’t ease your burden, but I for one think that you are an exceptional mother who has put an extraordinary amount of effort into raising her children. I hope and pray that things so smoothly with this new baby in the coming years.

  2. Wow.

    Erron, you consistently amaze me with your completely fearless willingness to just lay yourself open. That takes some serious…well, whatever, the female equivalent for cojones are.

  3. I am Cliff’s sister. I clicked on your blog by chance and… wow. Just wow. This entry is especially powerful because it is so personal. Mommy guilt can eat a person alive. We wonder what we did to cause this, that, or the other thing. We second guess our choices. We look at our kids’ problems and immediately think of how we, the nurturers and caregivers, could have done more to prevent whatever issues they have. To read something like this was so refreshing. It was raw and open and real, and it showed me that I am not alone in my feelings. Thank you so much, and well done.

  4. […] 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 th… […]

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