Photographs

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.