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Keeping it in

The past few months have been very difficult with Ethan. I haven’t put it all out there because, quite frankly, I was afraid to. I didn’t want him to be judged. I didn’t want people to think badly of him, nor of me. I used to joke about “Ethan being Ethan”. It isn’t a joke anymore. This has been my private pain. I only blogged about it on my very-private blog because I knew I needed to get it out and writing is how I accomplish that, but I also needed it to be safe and not put on blast. I’m still afraid of putting this part of our lives out there. My continued prayer is that he will not be seen differently, but rather accepted and loved as he always has been.

We started the evaluation process almost two months ago. He is not a straight-forward case like Ry was three years ago. We had to involve a psychiatrist. I needed to know we were getting it right. The result? A bunch of letters added to the description of E. The biggest, most life-changing diagnosis for him is PDD-NOS…pervasive (I hate that word) developmental disorder (yep, hate that one too), not otherwise specified. He is on the autism spectrum. For those that know him, that may come as a surprise. I am learning there are so many layers, so many types of autism. I can hardly see for all the lightbulbs going off over my head. I have found myself saying in the past couple of weeks just “he is on the spectrum”. I haven’t been including the word “autism” for a couple of reasons….a) almost everyone knows what you mean when you say “spectrum” and there’s no need to add the “autism” to it; and b) saying the word “autism” freaks me out.

We’ve entered a completely new world. I’m used to Holland….we ended up there when we had Ryley. (If you aren’t familiar with the poem, you can read it here: http://www.our-kids.org/Archives/Holland.html). But this isn’t a bit like Holland. You see, I thought I was where I was supposed to be with Ethan. He was, after all, my “healing baby.” We were exactly where we planned to be, or so I thought. With his diagnosis, I found out I wasn’t where I thought I was. But I wasn’t in Holland either. A friend of mine (thanks J) described it perfectly…we’re in Seattle. It’s loud, it’s cloudy and often rainy, it’s quirky. We do have some bright spots….people in our lives who are walking this path, a little ahead of us; people who are “in the know” as far as resources, therapies, IEP processes, etc; friends and family who just love us, who just love Ethan regardless of the letters now attached to him. And yet, I feel loss, pain, hurt, fear. He’s still Ethan, but he’s not what I had told myself he was. Or is he? The perfect pregnancy and delivery, the easy, happy, wonderful baby haven’t been taken. Why then do I feel like the healing has been whipped out from under me? And now I have to deal with a whole new new-normal?

I don’t know where I’m going here in this new place. I don’t know who I am in this new place. I know I’m going to have to be momma-bear again. I’m going to have to go to bat for him. I’m going to have to fight for him. I wonder if I have the strength. The self-doubt creeps in that I will have it in me to do what needs to be done on his behalf. And what will happen if I don’t have that courage and strength? And what do I do about the days I just don’t want to be in Seattle?

The scariest thing for me is this one doesn’t go away. This is Ethan, for the rest of his life. I go back and forth between knowing this is life-changing, and knowing it really isn’t. Ethan would be Ethan regardless of knowing this diagnosis. This would be his life whether or not we know a certain way to describe him. But now, we get him the help he needs to make him as successful as he can be.

We’ve had some bright days this week….the sun is shining which makes it hard to believe we’re in Seattle. I’m not naive. I know we won’t stay in the sunshine. I will cry. We will struggle. The battles will come. Welcome to our Seattle.

3 thoughts on “Keeping it in

  1. Oh, Donna. I can empathize with you completely on this. We are in the process of evaluating our older son for the same kinds of things. The word spectrum has been spoken. Asperger’s has been suggested. We don’t have a diagnosis yet, but it’s coming. I wrestle with the same issues – my son hasn’t changed, it’s my understanding of the way his mind works that has changed. And that’s hard to get a handle on. I think I’m finally ready for it, but I don’t know if I’ll ever really be prepared.

    Jenn

  2. Donna I am happy you shared what is going on in your lives. I love your family and am glad Ethan is a part of it. I know you are dealing with a lot. Ethan is blessed to have you as a mom. Love, aunt Colleen

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