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December 7, 2012

“What would happen if the autism gene was eliminated from the gene pool?

You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
― Temple Grandin, The Way I See It: A Personal Look at Autism & Asperger’s

There’s been a lot going on inside my head right now. So much that it seems I can suddenly become completely overwhelmed by just one more pebble being placed in my path.

Coming home from Disney, school, the holidays, and the general excitement of our house has collided with insurance company battles, illnesses, runs to the emergency room (seems to happen every time Mary gets a cold, and ’tis the season!), and still trying to set up a new team of therapists to fill the void that was created when our Early Intervention team left us with Mary’s third birthday.

Things have been busy.

In the midst of all of this, there have been a flurry of doctors appointments. It happens every couple months that we spend several days a week in hospital waiting rooms. Mary’s team has decided to try a test that has never been done at our hospital before. It’s exciting because it may finally mean we get some answers. It’s also terrifying because it means we may finally get some answers. Those answers may take a year to receive. There is a lot of information that we may get about our girl’s future that has nothing to do with what we are looking for, but we need to know. We need to know what is going on with our baby girl so that we can move forward with eyes opened, instead of blindly feeling our way down this path with our bare feet while we carry our precious girl.

I think a large part of why the hospital is starting with Mary is the autism- the combination of hers and her siblings’. It has been more than a year now since my husband and I came to the realization that we were not dealing with a simple speech delay, but that we may be looking at our third autism diagnosis in less than two years. It doesn’t get any easier the second or third time around. I was relatively fresh off the battle of getting a diagnosis for Joyce when our attentions turned back to Mary’s development. I had been telling myself that her delayed speech was due to her deafness. It became increasingly clear that it was not. The weight of it, the panic of realizing that I had not one, not two, but three children with autism threatened to crush me.

I remember the conversation in the car with my husband, driving down a picturesque road in Martha’s Vineyard. I remember the pit in my stomach and the flood gates buckling as unexpected tears flowed down my cheeks. This can’t be happening again.

I remember hyperventilating on my kitchen floor the night before her appointment. How much more could God put on this little girl? Why? Why her? Why all of them?

And there I stopped.

I switched off the emotions. I sat stone-faced in front of the psychologist who has become a family friend at this point, as she sees all three of my children a few times a year. I corked all of the pain that was welling up through my stomach and chest, the knot forming now in my throat as she gently laid the diagnosis out in front of me – autism, there is no doubt, no waiting and observing. Now to forming a plan, moving forward. We agreed on a treatment plan- a course of action. I thanked her, left, and then went home and drowned in a sea of self-pity and grief. Nothing had changed about Mary that day, and I knew that. But staring down the road at our future was more than I thought I could handle.

Now, we are starting down a new diagnostic path. The local Children’s Hospital has decided to sequence Mary’s entire exome. She is the first patient to have this done at our hospital. It is exciting. But as I wait, yet again, for another genetic sequencing test, my nerves have started to fray. I simply do not know what they will find, and I do not know how it will affect our family. There is apart of me that has been seeking these answers from the time she was first diagnosed with hearing loss. A scientific answer to the question, “Why?” I assured the doctors that I wanted the answers they believe this test can provide. But then, I look at Mary. I see her getting stronger in so many ways, but I see the gradual regressions in other areas. She is still having more trouble swallowing, the quality of her walking has deteriorated as the weakness in her left side has become more pronounced, and I am at a loss as to why. And she had another seizure the other day. It was the longest one I’ve seen in some time. I had really thought we had gained some measure of control over these episodes… I do not know what this new test will reveal, and watching her, I am suddenly not at all sure I want to know.

But something else has happened. I can’t tell you for sure the how, when or why of it.

This Something seems to have been a long time coming.

That twinge, that pain, that envy – it is fading, and fading fast.

I don’t see Mary next to the other kids her age and wish she could do what they are doing. I don’t hear the other children speak and ache for that one word from her. It doesn’t break me the way it used to. I don’t find myself sitting on the very edge of my seat, leaning forward hoping to hear something, anything, that might resemble a spoken word from her the way I used to. I don’t see the other kids literally running circles around her and secretly want to stick my foot out to trip them, just to stop them from taunting me with their physical ability. I don’t feel lost in the toy store anymore. I am comfortable in my understanding of the things that she likes – strings, papers and books are worth way more to her than barbie dolls and cars.

I am not angry, or sad, or jealous anymore.

It’s all gone. I don’t know how. I just noticed, talking to another mom the other day. The grief I heard in her voice about the things her child could not do. I understood it. Completely. But somehow I could no longer find that in my own heart. It is gone.

And it is so incredible.

It is so peaceful. I can sit back and just enjoy the beautiful, perfect, happy, precious little girl that she is.

Nothing has changed. But somehow everything has changed. Because somehow, when I look at her, I don’t see that fragile little baby anymore. I see a preschooler. A big girl. An independent girl. A girl who knows what she wants, and somehow, without words or signs, manages to get just what she wants.

When I look at Mary, I no longer see a severely disabled autistic child. I see the seeds taking root. I see the beginnings of a confident and capable self-advocate. And suddenly, I don’t hope or believe. Suddenly I know that she is going to do great things.

And suddenly those tests, they seem like such an inconsequential thing.


Mary enjoying the grass at the Christmas tree farm.

6 Comments leave one →
  1. December 7, 2012 8:53 pm

    Reblogged this on AutismeTanken and commented:
    Om at slutte fred med sit barns diagnose…

  2. Life&Ink permalink
    December 9, 2012 1:41 am

    Oh I just love this story. I love it, I love it, I love it. I love so much the overall sense of peace you have come to, I love that. And I know that peace. Oh my gosh girl you are just light years ahead of me. It took me until November 2008, when Ted was 17 before I truly experienced the peace you describe here. I remember the moment in great detail and one day I will write about it, but today, I just want to give you a huge cyber hug and say congratulations. The peace, it is wonderful, isn’t it. It is wonderful when you can see your beautiful Mary, as whole, intact and as the gift-giver she is. And you will handle what the future brings, because you have to and because you know, from that indescribable place, you know, that in the end, it will be okay. Sorry to be gushing, but as you can tell, I kinda liked this post! 🙂

    • December 9, 2012 1:56 am

      I have to admit to laughing at myself right now, because I can’t see to type through the tears of gratitude. You have no idea how much it means to have friends like you who really get this – then again, perhaps you do. For that, for this, I will be forever grateful. Thank you.

  3. December 9, 2012 2:46 am

    Rani (Sarah) here – I just love your Mary. I am so glad God has given you joy in who she is. Bless you all so much. ((Hugs))

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