From the outside in

I have been thinking about people’s reactions to Ellie and our story and disability for awhile and wondering how to put this but…I am starting to see that in our case anyway, it looks worse than it is from the outside looking in.

I have said that to people and they don't believe me. And I can’t speak for anyone but myself.

But more often then not when people hear our story and all its gory details or look at our situation they sometimes say and I am sure often think, “Thank god I am not them!” Or “That’s horrible!” I know this because I have thought these things when I have been seen other kids with disabilities different or more severe than Ellie's. So I am just as guilty as the next person for doing this. Lately, however, I am learning not to judge things I don't truly know about or have the intimate experience with to really understand.

I can honestly and easily say, I would not wish prematurity or brain damage on my worst enemy. There is nothing glamorous or funny about it for all you fakers out there(so much in that last statement for another post!). This has absolutely been the most difficult thing I have ever had to live through in this life. And if you really knew me, which most of you don’t, you would know that, that is saying allot.

However, I do wish to make a distinction about my life today, our life as a family as it is these days looking from the inside out.

I have had people say off color things to me recently like my PT for instance. I told him how great a Dad Dave was with Ellie and I said, “Ellie’s a lucky girl to have such a great Dad.” And his reply was to scoff. He literally made a tut sort of sound and said, “Well, she doesn’t have that much luck.”

Then the other day while I was doing strength building he was obviously thinking of my situation again and he said, “It’s so ironic that a mother and a daughter would both get club feet but from such different causes.” He said it so lightly, breezily as he was kicking a soccer ball around waiting for me to finish the exercise.

Please note that I like this person. He is an excellent PT, a good person, he seems to care about his patients and is generally kind. He asks about how Ellie is doing every time I see him. He used to work in early intervention. He is not yet a parent but he is of an age and in a certain amount of time in his marriage that he might be thinking about having kids. He also might feel a little overwhelmed when his natural inclination would be to put himself in my shoes. Because he is an empathetic person though at times he says things that are tactless as I have mentioned.

He is a good example of how from the outside people see that Ellie is different. They see me lugging her around, her not walking, her drooling, her head control not being 100%, her wondering eye, her vocalizations, her dystonic movements. They see that she goes to a different school. They don’t see us at the park much or running around on the street (well not yet – wait till next summer when Ellie is up to speed in her Pony walker!). People see the ambulance rushing us off to hospital. They see our house dark at other times during hospital stays. They see us feeding her through a g-tube and giving her medications.

From my perspective I have a totally different view. A dual perspective if you will because I am aware of all I have described above. Mainly, though, I see something else every waking moment of my life with my husband and daughter.

It is the inside view.

I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.

From the inside I have a daughter who needs me, who challenges me, who I have to make do things she doesn’t want to do like brush her teeth and tummy time.

From the inside I am a mom who worries about her child (just like all good mothers do). From the inside we are a very happy family: Dave, Ellie and I. We enjoy each other’s company so very much. I look forward to when I get to be with both of them. I look forward to when I pick Ellie up at school each day just to get to be around her. I look forward to helping her overcome her challenges and accomplish what she will - like any mother. I can imagine life without her. I have been forced to do that when she was on the edge. When I do that I honestly can’t imagine how I could go on without her.

So, I am not making lemonade out of lemons or anything stupid like that. To say that is to dimish my life and overlook the enormity of this experience, the wonder that is my life. I am also not in denial. If you read my blog you have heard me be quite honest about lack of sleep and having to make so many phone calls and fight so many battles.

I AM fully immersed in my life which, with all it’s challenges, is pretty good and particularly so for Ellie’s presence in it.

So from the outside you might see what appears different or even lacking. But that is all an illusion. Yes we are different. But no, there is nothing lacking here.

Our normal is perfect in my eyes.

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Picture descriptions from top down:

1. Last Sunday, Ellie at a fairy party laying on a big stuffed dog in a fairy tent stretching her wings.

2.Ellie and Mama at the same event reading a book in the fairy tent. Thanks to Haley for a rare pic of me and Ellie!