Lock Up When You Leave
Will I ride the summer winds
or dance upon the crimson horizon
Will I find paradise in hell
If I go deep into the woods
If I go to this cabin
-- "This Old Cabin" (Agalloch)
You might remember that I used to daydream about hiding in a log cabin when my heart simply could not take any more pain. I would place Erik on the soft, braided rug that cushioned him from the rough planks of the floor to play. I would light a fire and bake something that filled the room with the scent of cinnamon and vanilla. The red and white gingham curtains would always be drawn tightly shut over the little glass panes above the kitchen sink. The place felt ancient and worn but gave me so much comfort. The two of us were always snuggled inside, away from the world. We were perfectly bonded as mother and child there, and no words seemed to be necessary. I never saw what was outside and had no desire to peer into the darkness that seemed to surround us. In fact, I can't remember the place having any other windows at all. It was the strangest daydream I ever had. I used to go there quite often.
I have no idea how or why.
I can remember the place vividly in my mind, but I haven't been there for well over a year now. Sometimes I want to return to air the place out, but I know that is an excuse to poke around and see the place clearly, which I was not meant to do. We seem to have made our way out of darkness of the thick forest for good. I am still sad that I can't seem to find my way back. I suppose it served its purpose.
I have always wondered if people can detect the secret that is inscribed on Erik's DNA. I have heard that it is sometimes visible in his smile or on his face when he cries. The sheer horror of the diagnosis has faded after being exposed to daylight over the past couple of years, and I now find myself curious about the way the world sees him. Maybe that stems from a little fear, too.
I remember the day I knew my baby was different. I held a friend's infant on my lap. When this animated little girl smiled at me and simply moved her body, I saw everything clearly. The room began to spin, and I swallowed hard to fight the urge to vomit. I can't remember exactly what I said to my friend, but she definitely remembers that day, too. That was the exact moment I saw what had been lost. It just happened to be wrapped in soft, sweetly scented baby clothes cradled in my lap. A few days later I found the cabin in the woods.
I can still see the differences in Erik as he grows, and I am becoming comfortable with them. Hell, I even love most of them. At the same time, though, I'm blind to how the rest of the world sees him. It is not my place to see him any other way than I do. Sometimes, though, I wish I could step outside of myself and take a look. Maybe it's not important. I just feel that it might give me more tools to help him find his way somehow. I just don't want anything to injure me so badly that I feel like hiding again. There are some things, I suppose, that I am not meant to see.
Erik and I are no longer hidden from the world. Our interactions with it have been mostly wonderful, but we are still incredibly new at this. If I am asking questions, I think I am ready to open my eyes and tackle what comes our way.
There's no turning back now.
I just hope that the woman who discovers that strange little cabin next takes comfort in the faint scent of cinnamon left behind and the warmth of the fire she will eventually learn to build. I really miss that place.
However, it's time for me to leave it for her to find.
or dance upon the crimson horizon
Will I find paradise in hell
If I go deep into the woods
If I go to this cabin
-- "This Old Cabin" (Agalloch)
You might remember that I used to daydream about hiding in a log cabin when my heart simply could not take any more pain. I would place Erik on the soft, braided rug that cushioned him from the rough planks of the floor to play. I would light a fire and bake something that filled the room with the scent of cinnamon and vanilla. The red and white gingham curtains would always be drawn tightly shut over the little glass panes above the kitchen sink. The place felt ancient and worn but gave me so much comfort. The two of us were always snuggled inside, away from the world. We were perfectly bonded as mother and child there, and no words seemed to be necessary. I never saw what was outside and had no desire to peer into the darkness that seemed to surround us. In fact, I can't remember the place having any other windows at all. It was the strangest daydream I ever had. I used to go there quite often.
I have no idea how or why.
I can remember the place vividly in my mind, but I haven't been there for well over a year now. Sometimes I want to return to air the place out, but I know that is an excuse to poke around and see the place clearly, which I was not meant to do. We seem to have made our way out of darkness of the thick forest for good. I am still sad that I can't seem to find my way back. I suppose it served its purpose.
I have always wondered if people can detect the secret that is inscribed on Erik's DNA. I have heard that it is sometimes visible in his smile or on his face when he cries. The sheer horror of the diagnosis has faded after being exposed to daylight over the past couple of years, and I now find myself curious about the way the world sees him. Maybe that stems from a little fear, too.
I remember the day I knew my baby was different. I held a friend's infant on my lap. When this animated little girl smiled at me and simply moved her body, I saw everything clearly. The room began to spin, and I swallowed hard to fight the urge to vomit. I can't remember exactly what I said to my friend, but she definitely remembers that day, too. That was the exact moment I saw what had been lost. It just happened to be wrapped in soft, sweetly scented baby clothes cradled in my lap. A few days later I found the cabin in the woods.
I can still see the differences in Erik as he grows, and I am becoming comfortable with them. Hell, I even love most of them. At the same time, though, I'm blind to how the rest of the world sees him. It is not my place to see him any other way than I do. Sometimes, though, I wish I could step outside of myself and take a look. Maybe it's not important. I just feel that it might give me more tools to help him find his way somehow. I just don't want anything to injure me so badly that I feel like hiding again. There are some things, I suppose, that I am not meant to see.
Erik and I are no longer hidden from the world. Our interactions with it have been mostly wonderful, but we are still incredibly new at this. If I am asking questions, I think I am ready to open my eyes and tackle what comes our way.
There's no turning back now.
I just hope that the woman who discovers that strange little cabin next takes comfort in the faint scent of cinnamon left behind and the warmth of the fire she will eventually learn to build. I really miss that place.
However, it's time for me to leave it for her to find.
Labels: coping, grief, progress, Williams syndrome
posted by Nancy at 6:42 AM
7 Comments:
Beautiful, Nancy. Like you, we are slowly but surely getting out more in the world and not closing ourselves in. I wonder, like you do, how people see my daughter. More than anything, I hope they pause and see her beauty inside and out. These children's personalities are amazing.
I am pretty new to WS myself...(less than a year) and I too often wonder if other people can tell something is wrong with my little guy. I shouldn't care, but I do wonder how others see him. I happen. He is perfect to me and I fear the day someone is cruel to him. If only I could keep him in our safe little world at home foever!!
It is like you wrote this for me. I have had so many days lately where I want to go to this cabin. I am so tired of the people that I do open up to telling me things like, "he is going to be fine" or "he really isn't that much different than the other kids in our class". Bullshit, sorry. I mean they don't have to chase after any one else like they do him. Although I am appreciative that they love him and are patient with him I feel like I must be going crazy because I am the only one who sees WS more and more daily. I am sorry to explode here but you really hit close to home. Don't get me wrong not all things are bad but at the end of each day I am exhausted and wondering if it will get any better.
And that little cabin will be so very clean for her!
I love your writings... waiting to wait in a very loooong line at Barnes & Noble for that book signing of yours!!! I will be the one smiling from ear to ear telling all in line that YOU are my sister-n-law and a very dear friend!!!
Thank-you for sharing...
Beautiful, thank you. I could use that cabin. Yesterday was the 7 year Anniversary of Michaela's diagnosis. Even though we have come along way, it still brings back the feelings of my entire world stopping and having to re-arrange itself.
I always have, and still do, wonder how the world sees Michaela. Part of me thinks it's probably a real good thing not to know.
You really do need to write a book! And what a beautiful boy! Oh my! I too have had my own cabin, but feel like we ventured out and it burned down while we were gone. I feel like a little kid lost, scared and essentially alone. I wish I could find a new one, but know that I must learn to love the open air! It is just oh so difficult.
this was beautiful!
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