This I Know

Both of my pregnancies were complex, for different reasons. With my first, I was young, single, and it was quite unexpected. With the twins, we had tried for so long, we were very excited! But then we found out there were two! And then we found out it was two boys! And with the weekly ultrasound monitoring of the “high risk” two babies warrants, we knew twin B, Ben, was developing some kidney issues.

So we were worried.

Through their whole first year of life, as I fell deeper and deeper into the abyss of what was retrospectively, undoubtedly, postpartum depression, I would tell my best friend: I know something bad is going to happen. I feel it. I know I am going to lose one of my children. The nightmare in my mind, was of my older child being abducted, or Ben dying of his kidney concerns. Never Andrew. I’ve said it before, and I’ll say it again: He was totally under our radar of worry, because he was so beautifully typical.

I don’t remember what her responses to me were, as I asserted the fear that I would lose one of my children over and over and over.

But I was right. It just wasn’t in the way I expected.

Autism takes away the child that you knew. The smile is gone, the life from his eyes.
His words are gone, his motor skills. You watch helplessly as your child leaves inch by inch, because you have no clue what is happening or how to stop it.

I wrote in my chapter how hard it was to accept my stranger of a son in those early days. I missed the child I knew.

Well now it’s been two years of his life. Two of his three years. Andrew-with-autism isn’t a stranger anymore. It’s just who he is. It’s who we are. And two years ago, we knew no one else with autism, and now I have more friends with children on the spectrum than not.

And we spend our days watching the butterfly that is our son emerge from these symptoms called autism that took him over so long ago, and we celebrate. And we take no inch of progress for granted.

And I know in my core, just as in my deepest darkest days I knew I would lose one of my children, I know, in the most beautiful, happy days that are my life now, that he is coming back.

Just as deeply, I believe that autism came into our lives for a reason. I know this is not a popular sentiment. But for me, it is true. I believe it happened to us to clean up the way we live. What we put into our bodies. What we choose to put our energy into. How deeply we appreciate our children and how willing we are to fight for their futures. That’s why it happened to us.

Also, the moms that are now my friends. The work we do. These things I would never have been a part of if autism hadn’t come to our house. The changes we’ll make in the world, in the lives of other children, their health. The people in my immediate circle and my family make more conscious decisions about their health because of us. The domino effect is a positive one. And I am thankful for it. Each and every bit of it. Certainly not thankful for the pain my son has endured, or the time he was taken from us, or the grief we lived through and our parents lived through. But the rest of it, yes, I am thankful for.

And so when I went to the Option Institute this time, I had to ask the question: If I am thankful for autism, if it is really and truly the best thing that has happened in my life (and, yes, it is — the best and worst thing), then why do I advocate so strongly for informed consent? Why do I put myself out there so much to prevent autism, if I am THANKFUL for it?

Because I don’t believe that every child can or will be recovered. Because I don’t believe these children need to suffer needlessly. Because there are JUST TOO MANY children affected. Because not every mom is going to be able to find the peace I have found, or the purpose. Because in May 2014 alone, 11 children with autism died by causes directly related to autism.

Because the fact that we are happy in our house, doesn’t mean everyone this happens to can be. And just because we’re happy, it doesn’t mean we weren’t robbed of something.

So we must tell our truths: we must continue to educate, to lift up, to fight for our little ones whose voices were taken, or those who do not yet have a voice. I know, in my core,
that our truth is spreading, it’s making a difference.

With love from,

~ Phoenix