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.

One Year IFSP

My wish for you is that this life becomes all that you want it to,
Your dreams stay big and your worries stay small,
You never need to carry more then you can hold
And while you're out there getting where you're getting to
I hope you know somebody loves you and wants the same things too

-- "My Wish" Rascal Flatts

Erik and I just got back from an extended morning/afternoon at our early intervention facility. We went to our respective groups this morning and then had two hours to kill before we went back for our one year IFSP meeting. I drove over to my folks' house nearby and watched The Daily Show and the Colbert Report while Erik played with his toys and brought me books to read. We were both relaxed. The anxiety I felt before our prior evaluations failed to quicken my pulse and cause my stomach to flip like a fish out of water this time.

Brian met us back at the school for the IFSP at 12:15. There was a panel of four people to greet us. They were sitting in an ominously dark classroom with a humming laptop computer. The meeting seemed much more formal this time. I smiled when I saw Bev's bright red "Team Erik" bracelet peeking out from underneath her sleeve. Once we began our discussion, I commented that the goals they set for Erik each time he was evaluated over the last year seemed ridiculously lofty to me at the time but that this evaluation felt very different. In the past it seemed unlikely Erik would come close to reaching any of their seemingly advanced goals, but he has proven me wrong time and time again, mastering new skills and meeting almost every goal as he grows. Today we again set goals, including pretend play, using pronouns, climbing on playground equipment without assistance, using both hands to complete tasks, using three words together, asking questions, and dressing/undressing himself to prepare for toilet training. Erik has already clearly begun to progress towards most of these goals, although his disability makes some typical activities challenging. However, he has demonstrated that he is beginning to physically and mentally compensate in areas he has difficulty with, such as feeling stairs with his toes/feet when he cannot visually determine their edges. In other words, he is beginning to adapt to the world beautifully using his strengths to triumph over his weaknesses. It's an amazing process to watch unfold. I couldn't be more proud of our son.

Because I do not witness what happens in his classes each week, it was wonderful hearing what the other staff had to say about Erik. He is obviously a beloved part of the program. He knows each of the numerous children and therapists in his classes by name and greets them each week, something no other child there is able to do at age 2. His turned in left toe was not evident in class today, but his physical therapist told me she is beginning to determine it is a problem that originates in his hip and pelvis that results from anxiety manifested as muscle tension. He will continue to wear his orthotics for most of the day for the time being to keep his feet flat. They asked us what he loves in order to help coax him to learn, something they all agreed is generally not a problem for Erik. We told them that he loves his family, music, and the outdoors. He is easily distracted and anxious, which is the biggest obstacle in his learning, and we will work on that in different types of busy environments over the next year. This has already greatly improved.

We now look forward to taking a big step. By September, he will likely be the youngest child in his preschool class but will have an extra year there before he enters kindergarten as one of the oldest children, something I see as a definite plus as he begins his formal education. We will probably decide to enroll him in the preschool class at the same EI facility he is accustomed to two days a week for two hours at a time, and he will ride the school bus home. I am hoping there will be typical children in his class.

It's hard to believe that just one year ago we wheeled our quiet, drooling 17-month-old in for an evaluation. He was unable to walk or follow instructions. He did not play with toys appropriately. He barely responded to his name. In fact, he did a whole lot of nothing, although he was very pleasant about it. He really had little opinion on anything at all and had never said "no." Not once.

In contrast, today was an emotional day knowing how far we have all come and how much brighter the future looks. One year ago, I thought my life was over. I thought the darkness would never lift. I did not know how we would begin to survive what had happened. My son would either die or live his life in an institution. Today I can take a look back and easily see that those profound, seemingly mortal wounds have become shiny, pale scars I will always carry with me. I actually forget about them now unless the light hits them just right.

I can see that there is a lot of life left to live. I am excited to see where this beautiful boy takes me next.