Erik Quinn: The Heart of a Family: Photographs

Wednesday, April 04, 2007


This entry is very difficult for me to write, but I have wanted to express my feelings about this topic for some time now. It is an honest evaluation of how I feel in a particular situation. I have never seen or heard anyone admit this before. I can see that not everybody "gets me," and I am okay with that. My goal in my writing has been to be as brutally honest as possible, and I do not plan on being anything but honest here, so here goes.

Confession: I am uncomfortable showing photos of Erik to people I do not know well.

There. I said it.

Possible reasons:

(1) I feel like I am lying when I present photos of Erik to people who assume he is "typical" and I allow them continue to think that.

(2) Part of me feels I failed as a woman because I produced a child who is not genetically perfect and I do not want others to know.

(3) Someone might ask questions I am not comfortable answering and make it obvious something is wrong with Erik.

(4) They might actually see something is wrong with him (there is a reason WS has been called "elfin facies syndrome").

(5) I want to protect my son from the world.

To my complete horror, I dared myself to ask someone I just met this weekend if they wanted to see photos of my child. I could not believe these words were coming out of my mouth, but they were. I believe this proves I want so much to brag about my son just like any other mother would. Unfortunately, it is not quite that simple -- for me, at least. It is impossible to brag about most things typical kids do. Besides, I am honestly the most proud of him doing things like walking over uneven surfaces, learning to drink from a straw, walking up stairs, and things of that nature. That flavor of bragging may seem a little strange to some people who do not know the entire story. On this occasion, I kept my mouth shut and just showed the photos, which seemed to be well received. It did not matter, however. I remained horribly uncomfortable and made a note to myself it is not quite time for this yet. In short, I felt like a giant FAKER telling a huge LIE. The smile on my face was plastic.

I also confess that when I am put on the spot and WS finally reveals itself, I feel a twinge of shame and embarrassment when our "secret" is known. I am not entirely sure why. I am so incredibly proud of Erik, and I think all of these issues are purely mine with nothing to do with Erik whatsoever. I still feel a great deal of guilt when I feel this way. What kind of mother would be ashamed of photos of their own child? I remember the day the diagnosis was handed to us. It actually felt dirty to me, like something awful and evil had overtaken our precious baby, and I wanted it gone. I could see it then, forever present in his face, and it ripped my heart out. I honestly just wanted to take a hot shower to cleanse the feeling away. Crazy? Probably.

I am light years ahead of where I was a year ago, but I suppose it is unreasonable to expect myself to be completely ready for every situation yet. There is still hurt underneath the surface, and although I am fine sharing Erik with people who know and love us, I am still very uncomfortable with the rest of the world knowing our story just yet. I guess that is part of why I blog. I can brag here and share my photos in relative comfort. That is important to me. Because I AM very proud of my son. It is interesting that I have no problem taking Erik out and about and letting his charm reel people into loving him instantly, letting Erik speak for himself. When Erik is with me, I can do anything. When he is not, I choke.

If only I did not feel like I had failed him and my family somehow.

Labels: , , , ,


Blogger Kerry said...

I don't have a problem showing Brady's picture, but I definitely have a lot of the same feelings you do. Especially when people think he's "typical". I think, "Do I HAVE to go into explanation mode?" or I feel like I have to explain why he's not crawling, etc yet. And then I feel like apologizing to my friends who have babies the same age but he can't really play with them yet, so we are left out of the social circle somehow. A part of me is glad he and Michael are so far aprt in age so he won't see how many friends Michael has where he may struggle in that area, as I have been reading from other moms with older WS kids.

Whereas Brady was a fertility baby and Michael was not, I wonder if we could have prevented the WS somehow. Of course, without the fertility he wouldn't be here, or maybe he would have been if I was more patient.

So many questions and feelings... no answers... Except one, Nance - there's definitely other people out here who know exactly how you feel and feel the same way. I do love you and that little moppet of yours! :)

12:33 PM  
Blogger Kim, Grandma to Ava,ws said...

You are not alone, Nancy. I, too, feel uncomfortable sometimes. There are situations when Ava smiles at strangers and just has that *look* about her and I am so afraid someone will ask why she is different. But unlike you, I am DEFENSIVE about it. Sometimes I get this 'what are YOU looking at??' thing going on. I have never been in a fist fight in my life, but I swear if someone says anthing about my girl I could go ballistic. I guess we all cope in our own way. Anyway, I am proud of Erik and I think he is just adorable. I have to chuckle every time I think of "Subaru!" or "Volkswagen!". And if it makes you feel any better, Ava hasn't progressed beyond "Bah!"

Love, Kim

12:34 PM  
Blogger Nancy said...

Thank you, Kerry. I was afraid people would think I was nuts but then I wrote this down just because I want to be true to myself and my feelings.

Kim -- Maybe that's part of it, too. I don't want to hear what other people think because I might "go off" defending my baby. I guess that is part of reason #5 in my post. I'm not ready for the stares and the comments yet, although I think I will be at some point. Xanax and biofeedback, here I come.

1:28 PM  
Anonymous Aspen said...

Nancy, I know EXACTLY what you mean. I LOVE showing off pictures on my blog...but that is as far as the showing off goes. I hardly ever bring out the pictures at work. And when I do, it is only to my closest coworkers. I do have a picture in my wallet but I never bring it out to show it off and when people happen to see it I can feel myself tensing up and getting nervous.

I am not sure why I tend to panic. What are they going to say..."wow he looks funny" I couldn't imagine ANYONE having the nerve to say such a thing. And if they did, I imagine I would whale back and punch them.

And Nancy, you could NEVER say anything to be ashamed about. I can promise you anything you say will never be used against you or to judge you.

Thanks for being brutally honest. That's why I love you!

1:36 PM  
Blogger ~Deb said...

"...I want to protect my son from the world."

That's what I hear throughout this entire post.

He's beautiful and I'm sure he's absolutely precious in his own way. Never be ashamed Nance...

God bless!

1:38 PM  
Blogger Every minute counts.... said...

There is so much truth to what you have said. I am proud of you for saying it. I have felt the same way too many times to mention. It is hard to balance your pride in your child and the fact that people by nature don't understand things that they themselves have not dealt with.
I am from a family where my older brother has a physical disability and there is no hiding it or any chance that someone will not notice, and my confession: I have hidden the fact that he is my brother on more than one occasion in my life(especially my teen years).
The thing is we learn through those brother taught me alot...Abi has taught me best friend who was born with Spina Bifita has taught me alot...
It is amazing how some of the people closest to me have something "wrong" with them. Those 3 people are also the most giving,non-judgemental, kindhearted I have ever met. There are so many people who miss out on all that they can offer because they can't get over the fact that they are, "different".
Okay...I'll stop talking....


4:02 PM  
Blogger Nancy said...

Sitting here with tears in my eyes because (a) my feelings don't seem so horrible now that they are out for me to see and (b) because someone UNDERSTANDS. That is much more than I could have asked for when I began this post.

With time, more healing and peace will come. I have faith.

Thanks, you lovely ladies.

4:49 PM  
Blogger Lizard Eater said...

Just wanted to say "bless you" for your unflinching honesty. Our situation is different -- now that her hair has grown in and she's gained weight, the only way you could tell anything is different about LW would be if she showed you her scar -- but I've certainly had my deep dark thoughts.

Yours sound entirely human. You are courageous in your honesty.

6:10 PM  
Blogger ~Deb said...


I'm glad to see you're me.

Ease up on yourself.

6:01 AM  
Blogger Lisa R said...

I get ya and love you...I always tell people that Tate has Heart Deasease...I always feel bad for saying it, although it is true it is a 1/2 truth...

1:46 PM  
Blogger Kati said...

Oh, Nancy.... I truly understand you!!!! Fortunately there are not too many people who are strangers and wants photos of Szabi :DDDDD
I am totally proud of Szabi, but I don't want to tell everybody what's wrong with I usually tell to the "closest strangers" (=neighbours for example) that he is hypothon, so we have to go to PT, but he'll reach his age at the age of 6 or 10.... this is not a real lie, because he is hypothonic :)) And I usually tell that's why his mouth is down and he is so soft. And these people accept this and love Szabi... maybe some moms don't like this form of lieing, but it is the more comfortable for us now.
Thanks for being honest! ;D

Love, Kati

2:24 AM  
Blogger Rosemarie said...'re human and all these feelings are valid and normal. You're trying to make sense and put the puzzle together the best way you know how and in a comfortable process.

Being on guard regarding the tender areas of our lives is a good thing. Being vulnerable with strangers can be very scary.

You're sensitive, real, and an extraordinary woman and mother.

Keep sharing the journey!

10:01 AM  
Blogger Rosemarie said...

This is a feature post on my blog. Thanks for sharing!

10:12 AM  
Blogger kathi said...

You are such a brave woman for confiding this. We all have feelings we want to hide, that we're ashamed of for whatever reason, each our own.
I wish I could relay to you in a way that would make it real to you how very much we love not only you, but Erik too. We see you as the absolute best mom, and a strong, brave and beautiful woman. Okay, a bit on the tall side, but hey, we've all got our little quirks. LOL, teasin'.

I am proud of you with every fiber of my being and thankful that you share Erik with us.

6:22 PM  
Blogger Teresa & Shawn said...

Oh, Nancy, you know you haven't failed at all with Erik. You are an incredible mother and he is such a beautiful little boy.

I know how you feel about the photos. If Clare looks too "Williamsy" (that's our word for it) in a photo, many times I will delete that photo. I am pleased when her professional photos come out looking "normal." I think it's a typical response - why wouldn't you want your kids to fit in? When anyone asks me Clare's age and I respond, "two," I find myself often hastily following that up with "she is delayed" to explain away any shock I may see on their face.

10:39 AM  

Post a Comment

<< Home