Erik Quinn: The Heart of a Family: Guilt

Tuesday, August 21, 2007


I can't speak for my son, my husband, any member of our families, or my friends. I speak for ME here. I will never intentionally pretend to know how anyone outside of this particular woman named Nancy is feeling.

Today I asked myself today why I continue to keep a web log. Something is changing.

The answer: I blog because it is socially expected that I smile sweetly in public when I feel like screaming, sobbing, or assaulting someone related to my emotions that stem from the horribly cruel birth defect that my beautiful son happens to have. I have very successfully put on a brave face through therapies and children's birthday parties and parent groups and doctors appointments and IFSP meetings when it was the last thing I felt like doing. I believe that I have jumped through the correct hoops at the correct times, and I have acted appropriately and ladylike. I have prayed the appropriate prayers, and I think I'm a pretty decent mother. I have been invited to be on boards and attend meetings outside of what is normally expected for a special needs parent. I don't believe I have embarrassed anyone. I have even kept my tears to a minimum lately in order to minimize any discomfort I may cause the people around me.

However, these emotions and thoughts have to go somewhere.

If you see me on the street, it is very possible that out of politeness and in the interest of saving your valuable time I may serve you up a white lie and report that life is a beautiful bowl of cherries when I feel like curling up in my closet under a blanket for the rest of the day. Thankfully, because I have this outlet, I get up and face this big, old world every glorious day. I'm not alone. I do this just like all of the mothers I know who wear similar shoes. If we didn't, we would be missing out on a lot of what is right and what is beautiful in each day. You just have to wade through some ugly to get there, and the right and the beautiful, as it turns out, are even more wonderful after that.

Unfortunately, a lot of what I say isn't pretty. It's not supposed to be.

When nobody knew I was writing here, I wrote anyway. At this point, there are more people reading my thoughts here than I would have ever imagined would have bothered with me. That's really frightening sometimes. The side effect of this is a new sense of shame and guilt when something un-pretty comes out of my head. I have come to love many of you who come here. Never in my wildest dreams did I imagine that would happen. All I can do is warn you that you will never hear lies from me here, and I hope that I do not upset someone with my own thoughts. I am not sure what to do with these new feelings besides making this journal completely private from this point forward. I'm not ready to do that. So I just issue the warning that this is my journal and these are my raw thoughts. They are true, and I want to put them down so that, God willing, I can look back on my life and see how far I have come as a mother. I am so incredibly lucky to be a mother.

Okay, at this point, Ted Kaczynski's manifesto was more succinct and made much more sense. What I'm trying to say is this: You are witnessing a woman grieve. You are seeing someone bleed gallons of sticky, copper-scented blood. You are watching someone heal twisted, ropy scars. Some of you have no idea what I'm feeling, but you come here anyway, and I always attempt to take you with me on this ride through my writing. In this sense, my blog has turned into something fabulous, because I never feel alone. Ever. There are those of you know exactly how I feel and have similar scars. Frankly, I am hurting right along with you, and, dammit, I truly believe many of us are making progress. It's not a pretty process. If it is, then something isn't quite right. That's my opinion.

This is the most incredibly personal thing I have ever dared to do, and it's only because of the wonderful feedback I have received that I have kept baring myself in a very public forum under a very bright spotlight. Much of what I write is happy, but much of it is not, and I will not apologize for it. That wouldn't be fair to the people who come here to read my true thoughts or to myself. There is poison inside of me, and when I write, I feel normal again. That's a pretty amazing gift in a life like mine. I have always grappled with my struggles through writing. After I am finished typing here at my desk, I am almost euphoric. I feel like I have just been violently ill but know I will not be sick again for some time. I then get up and go on with my daily life, and I am thankful for who I am and what I have. It is good. I am a fairly happy person on most days. I pray that you can feel the same emotions if they apply and can let them ebb and flow just like I do in order to heal and move on. I don't want to depress anyone or cause them sadness. Maybe I'm completely flattering myself, and I haven't made a dent in one single moment in one single day of one single life. You know what? I'm really completely okay with that. However, I have a knot in my stomach and would never want to hurt anyone with my words. This just needed to be said. If I'm doing more harm than good, I'm hanging it up and will continue to write--in private.

Whatever happens, thank you for loving me, scars and all.

By the way, I love you, too.

-- N

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Blogger Katie said...

Your scars make me feel better about my own scars. That sounds somewhat saddistic but what i really mean is that your writing encouraged me to write to.
I to, need this. To get it out. I feel the same about my false life - so much of the day spent smiling and nodding through gritted teeth and politely accepting advice and making small talk with people who have absolutely no idea who the real me really is. To other people i need to be the perfect mother. Here i can be myself. In a way making friends this way is the biggest blessing and in a way it seems to close that anonymous gap that feels so comfortable- these people become your closest friends and suddenly you dont want to hurt them either.
Thankyou Nancy for opening up the world and allowing me to be myself.

3:52 AM  
Blogger Heather said...

Nancy, whatever you choose to do, I hope you will still visit us to let us know how you are doing. Don't dissapear. After nine years of being 'alone' I know how it feels to not have support from people who really know how I feel. It has helped me tremendously. This is my therapy, my counsling. I think it is something we all need to keep our sanity. Almost none of the others have a child as old as mine, and I still look to them for support. I know they probably judge me too. They probably get scared when they look at Caleb. Sometimes it may be comforting. we do what we have to do to get by. its not always pretty. We get it, and we accept it. For some reason it was meant to be this way. much love~Heather

5:00 AM  
Blogger Every minute counts.... said...

I can do nothing more than repeat what Katie and Heather have already said. Your scares are very similiar to my own. I get so tried of being the one who has to keep it together who is expected to keep it together. Sometimes you just can't and that is that. When the what if's creep in and they always do, you question so many things in life.Don't worry about being judged by me...I love you the way you are! Your writing helps me through this greiving process and that is exactly what it is a long, back and forth, good days and bad days...process.


8:24 AM  





8:26 AM  
Blogger Tara said...

I hope you know how I feel about your blog. Your words describe how I feel so often - I just can't seem to put it into words like you do. I always just post a link to your site so my family can read your post and get a better idea of how I feel. I'm not good at expressing myself. And - I too put on a happy fake smile every day and it gets very old. I've found it's hard to be myself around anyone, because no one can relate. So, thank you for all of your posts - you are like therapy for me.

2:41 PM  
Blogger Brendan said...

Nancy, along with the precious gift of bringing your son into the world, and sharing him with us, YOU also have another amazing gift that you share with us--your ability to write.

Your thoughts, feelings and observations--allowing us to see into your world--help us to realise we are not alone with the trials that these beautiful children have brought with them into the world for us.

Reading your words, helps me, a father, understand better what my wife may be thinking and feeling, but is unable to communicate with me.

I can honestly say that having our daughter has made us a closer, stronger, better family. We have more love than any other family I know.

And at the end of the day, where would we be without love?

Thankyou for sharing.

3:53 PM  
Blogger Nicole said...

Nancy, I love you and that little man of yours so much. You have such an amazing way with words, I am constantly in awe of you.

Please don't feel like you need to apologize for your feelings or your struggles. All we can do is just support one another and not judge. We are all in this together. We have each other to share our struggles, our success stories, and to figure out how to cope with it all. Thank you for being there for me and I will continue to be there for you.

6:54 PM  
Anonymous Anonymous said...

Hi Nancy,
Michele here, from the Aussie forum. I think you should be very proud of what your blog has managed to do for so many people around the world. It sounds as if we all have very similar thoughts and feelings about being a parent of a kid with Williams Syndrome however we don't all have your amazing gift of putting them into words. If it helps you to write the blog then keep doing it, if it offends anyone then they should stop reading it, you shouldn't be the one who stops writing it, I'd miss your blog if you stopped.
Michele x

8:13 PM  
Blogger All moments remembered said...

Hi Nancy, This is Stacey, Heidi's friend who use to live near you. I hope you do not mind but Heidi has shared your blog with me. Over the past couple of years I have asked Heidi how you and your son are doing? She sent me to your blog So now I can read your story.
Just from the few post I have read you seem to be such a huge incredible help to so many others! With your words you have helped so many who live your same story. How incredible must that feel to know you can share your hurt, sadness, happiness, fears, struggles, and all your other feelings here and help so many. I am brand new to reading your blog but I say if it helps you and helps others you need to keep it up!!!!!
You have always been in my thoughts since I heard you were pregnant and you have continued to be.
So I hope you don't mind if I pop in and read your stories. I have never had to deal with what you are dealing with but as a mother can ONLY IMAGINE what it must be like for you. If ever I can be of any support to you I am always willing to do what I can.
Hugs to you and your sweet little man,

9:02 PM  
Blogger Rosemarie said...

I encourage you always to share in your own voice and as emotions allow. You have a talent as a writer and your unique journey helps every mother see the blessings in the everyday. Your journey and Erik's life our gifts that keep giving.

If you ever go private I can understand, but I hope I'm invited to participate and be a witness of miracles changing the lives of others. Never doubt that Nancy! *teary eyes*

10:11 AM  
Blogger Amy said...

The other night as I lie awake, I was marveling at how you express your pain out loud, and wondered why you have more pain than I do. And than I understtod that you don't have more of it, instead I shove it back in, plug it, bandage it, pretend it is not there. I don't acknowledge it because I don't know how to fix it and make it go away. I don't think about the future, because I can't solve it and make it less scary, or even predict it for that matter. I often wonder why you do. I think it is because you are either braver than me or crazier than me. XOXO

11:00 AM  
Blogger Julie said...


I have been through alot in my life, the loss of a parent at age 7, having a baby at 16, divorce, raising 2 girls by myself, seeing my husband through the loss of his 5 year old son, and Noah's heart surgery and diagnosis. I have always said I am able to deal with all that God has dealt me because I am such an open book. Someone told me once if anyone wants to know anything about me just ask and I'll probably tell them more than they want to know. I am glad you share your heart and soul, it helps the rest of us not feel alone

12:44 PM  
Blogger Teresa & Shawn said...

I love to read what you write, Nancy. Even if I hate the words sometimes (because they mirror my own scary thoughts and feelings). You are so much braver in so many ways than I am because you do not hide anything on your blog. I love that about you. I love that you can express your deepest fears concerning Erik and his future yet still face each day. I am still learning to do that with Clare. It makes me feel better that I am not in this alone.

4:05 PM  
Blogger Jennifer said...

Your blog helps me to understand what it is that my sister-in-law is going through. And, it's not that she doesn't explain things, because she does blog about a lot. But, it is sugar-coated, I know she is typing away her thoughts of the day, but still screaming inside what she really wants for us to hear. I love that she has linked to your post on a couple of different occasions, because I otherwise wouldn't have known your blog was there. It's a very true blog and that's what I like the most about it. I find myself crying when I read your blog because I can't imagine how it feels as a parent to worry about the things that you (and other parents of children with disabilities)have to worry about on a daily basis. I think your blog gives us a more realistic view of that and maybe in a way shows us the emotional and mental side of what you are going through. I hope that you continue to blog. Don't mind all of us strangers, please look at it like you are helping other parents of WS children explain to their families how they are feeling. You put a light on things that we, as humans, don't want to talk about, but it's what we need to hear. It has helped me to see more of Tara, without her ever having to break her walls down to tell me. Thank you for that and for giving me a real life view of just exactly what it is that you go through each day. God bless.

6:51 PM  
Blogger kathi said...

You've touched my life. I'm in awe of your writing, I love Erik as if I've actually hugged him and seen his sweet smile first hand, and I simply adore you. You mean a great deal to many people. I'm definitely one of them.

8:59 AM  
Blogger Kerry said...

I have been gone a few days so this is the first time I am reading this. I don't want to reiterate what everyone has already said, so I will tell you this: I love you :) and I am glad you are doing whatever you can to keep your "regular" life liveable. My blog has gone from friend to friend to relative to relative, to the point that I can't always speak my mind for fear I will hurt someone's feelings. I don't mean my online friends, they pretty much get it, but the ones I have to see all the time at home! :) I might start a blog just for you guys and a select few here to see and not tell anyone ;)

Blessed be little Erik, I don't know what I'd do without my little updates on him :)

10:00 AM  

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