Metamorphosis
Welcome to post #101.
All of the posts here are handcrafted and brewed to perfection using my own distinctive formulas and using only natural ingredients. It has been quite a journey so far, hasn't it? Thanks to those of you who have continued to read my thoughts and kept our family in your thoughts and prayers.
Erik's therapist stated Thursday that I seem like a different person than I did seven months ago. She commented on how playful I am now and seemed genuinely surprised by this, even though she met me at the same time we found out Erik has Williams' syndrome. It's comments like these that make it obvious to me that unless you are in our shoes, even if you're a professional, it is nearly impossible to comprehend what this experience has been like for my family and the effort it has taken to pick ourselves up and move on. Unfortunately, moving on means living with Williams' syndrome on a daily basis. There is no "getting over" a birth defect, as it is always present, affecting how our child views the world and the way he gets around in it.
It is an extraordinarily lonely feeling to be handed a devastating diagnosis such as WS. You must walk calmly out of a building, get in your car, and go home with it like a time bomb wrapped in brown paper, knowing your life has changed forever, although you don't want to believe it at first. It feels like a new, silent member of the family sitting next to you that can no longer be ignored. Since that quiet, rainy drive back home over the mountain on March 13, 2006, with our new diagnosis, we have learned to cope with its presence and have become capable of feeling some joy again. There is so much joy with Erik in our home. However, seven months ago, I was living in a black fog and had no desire to be "playful." Who would? Anyone who met me at that time met a complete zombie. Even my son was less than playful at that point, as WS rendered him unable to interact much with me or the world. There was not much to smile about, as far as I was concerned. When I met the people at Erik's school, the dreams I had for my son had been completely destroyed. I felt it was necessary to get to know our son all over again somehow and learn to appreciate him for who he is and who he will grow to be. If you think you can look at your child the same way after a blow like that, you are in for a rude awakening. Everything changes. You need a new plan of attack, and you throw yourself into being an advocate for your kid. You watch your friends' kids surpass yours and feel even more lonely. You want to stay home and shut the world out. It's hard, and there are some days you want to throw in the towel. It's exhausting. It's depressing. It's heartbreaking. Just when you succeed at one challenge, your child grows and there is another one right behind it like hurdles on a track. However, it's also very rewarding. Erik is now giving so much back to us every day in the form of smiles, being a comedian, and asking for a cookie every 30 seconds. Despite our struggles, I have a lot to smile about these days.
I suppose I am a different person, but not in the way that the therapist meant. I'm stronger, and my priorities are different. I no longer apologize for tears, laughing too loud, or being flat-out pissed. There are still many days when I feel so weak, but for the most part I feel stronger than I ever have in my life. I can thank Erik for that. I have never been so in love with anyone in my entire life, even though it took a long time for this love to blossom completely in me. I believe it is pretty obvious how we feel about each other by just looking at us. Seven months ago, I was just beginning to fall in love with my 17-month-old, even though I loved him very much already. I simply had no idea what my heart was about to experience.
I'm not sure what I will do to mark the anniversary of our diagnosis. I see that other people take note of the one-year mark, too, and consider it a celebration of sorts, even though it was a devastating day for most. To make it one year is to be celebrated, even though there are definitely undertones of sadness. I will follow the example set for me by the amazing new friends Erik has brought to me and simply feel what comes to me on March 13, 2007. I'm sure by then I will find myself even more different than before, and I am anxious to see what being Erik's mother will bring next. I'm looking forward to that anniversary, but now that I have lifted my head up and realized that we are over halfway there, I must put my eyes back on the path and ready myself for tomorrow. One day at a time.
In the meantime, I'll start on the next 100 posts, as writing seems to be therapeutic, at least for now. I hope you enjoy the ride, and I am so thankful I am no longer feeling so alone.
All of the posts here are handcrafted and brewed to perfection using my own distinctive formulas and using only natural ingredients. It has been quite a journey so far, hasn't it? Thanks to those of you who have continued to read my thoughts and kept our family in your thoughts and prayers.
Erik's therapist stated Thursday that I seem like a different person than I did seven months ago. She commented on how playful I am now and seemed genuinely surprised by this, even though she met me at the same time we found out Erik has Williams' syndrome. It's comments like these that make it obvious to me that unless you are in our shoes, even if you're a professional, it is nearly impossible to comprehend what this experience has been like for my family and the effort it has taken to pick ourselves up and move on. Unfortunately, moving on means living with Williams' syndrome on a daily basis. There is no "getting over" a birth defect, as it is always present, affecting how our child views the world and the way he gets around in it.
It is an extraordinarily lonely feeling to be handed a devastating diagnosis such as WS. You must walk calmly out of a building, get in your car, and go home with it like a time bomb wrapped in brown paper, knowing your life has changed forever, although you don't want to believe it at first. It feels like a new, silent member of the family sitting next to you that can no longer be ignored. Since that quiet, rainy drive back home over the mountain on March 13, 2006, with our new diagnosis, we have learned to cope with its presence and have become capable of feeling some joy again. There is so much joy with Erik in our home. However, seven months ago, I was living in a black fog and had no desire to be "playful." Who would? Anyone who met me at that time met a complete zombie. Even my son was less than playful at that point, as WS rendered him unable to interact much with me or the world. There was not much to smile about, as far as I was concerned. When I met the people at Erik's school, the dreams I had for my son had been completely destroyed. I felt it was necessary to get to know our son all over again somehow and learn to appreciate him for who he is and who he will grow to be. If you think you can look at your child the same way after a blow like that, you are in for a rude awakening. Everything changes. You need a new plan of attack, and you throw yourself into being an advocate for your kid. You watch your friends' kids surpass yours and feel even more lonely. You want to stay home and shut the world out. It's hard, and there are some days you want to throw in the towel. It's exhausting. It's depressing. It's heartbreaking. Just when you succeed at one challenge, your child grows and there is another one right behind it like hurdles on a track. However, it's also very rewarding. Erik is now giving so much back to us every day in the form of smiles, being a comedian, and asking for a cookie every 30 seconds. Despite our struggles, I have a lot to smile about these days.
I suppose I am a different person, but not in the way that the therapist meant. I'm stronger, and my priorities are different. I no longer apologize for tears, laughing too loud, or being flat-out pissed. There are still many days when I feel so weak, but for the most part I feel stronger than I ever have in my life. I can thank Erik for that. I have never been so in love with anyone in my entire life, even though it took a long time for this love to blossom completely in me. I believe it is pretty obvious how we feel about each other by just looking at us. Seven months ago, I was just beginning to fall in love with my 17-month-old, even though I loved him very much already. I simply had no idea what my heart was about to experience.
I'm not sure what I will do to mark the anniversary of our diagnosis. I see that other people take note of the one-year mark, too, and consider it a celebration of sorts, even though it was a devastating day for most. To make it one year is to be celebrated, even though there are definitely undertones of sadness. I will follow the example set for me by the amazing new friends Erik has brought to me and simply feel what comes to me on March 13, 2007. I'm sure by then I will find myself even more different than before, and I am anxious to see what being Erik's mother will bring next. I'm looking forward to that anniversary, but now that I have lifted my head up and realized that we are over halfway there, I must put my eyes back on the path and ready myself for tomorrow. One day at a time.
In the meantime, I'll start on the next 100 posts, as writing seems to be therapeutic, at least for now. I hope you enjoy the ride, and I am so thankful I am no longer feeling so alone.
posted by Nancy at 6:08 AM
5 Comments:
I have a friend who reminds me I need not always look on the brighter side of things - that I can sometimes just say "This sucks." It's very true... you never get over the words "Your child has William's Syndrome." You just learn to live with it. You learn to change your ideals, your hopes, your wishes. You learn what else is important. You learn how to cope... you learn how to make friends with people all over the world via the internet :)
You have helped me, Nance, and I thank you for all you have done.
Love you - K
My one year is also in March, we can "celebrate" it together... Vegas in March sounds wonderful..) I still can not figure out how you mindread from across the country.
Love :)
How can it be just seven months? We knew real despair that day. So much ended cruelly and abruptly, all out of our control. It seems like a lifetime ago. We're all very different people today because of WS. The joy that Erik brings, and the pride that I have in watching him grow and flourish, would have been inconprehensible that awful March day. And you know, I think the therapist has grown in many ways by knowing you and Erik and our family. It's one of the many good things that are to come of all of this. I'm so thankful to be a daily part of your lives.
Love, Mom
MY HEART IS STILL SO FULL OF EMOTION SINCE ERIK'S BIRTHDAY!!
SO BEFORE MY EYES SWELL UP WITH TEARS... I LOVE YOU GIRL AND CHEERS TO THE NEXT 100 POSTS!!
BIG HUGS!!!
DAWNITA
Honey, XOXO, I love you for everything you are. Thanks for being there for me...you the best,
Amy
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