Archives for the month of: April, 2010

Last night we were leaving a restaurant, Joy and Grace headed out to the car while I paid.  I had Grace’s diaper bag on my shoulder and dangling from it was Grace’s soft pink helmet.  I passed by a group of out of town high school students that were waiting for their chaperones and one of the students blurted out to one of his friends “hey you’ve got a helmet just like that.”

At first I was like ‘did i just hear that’ and then as part of the group looked over at me gasping in shock while at the same time laughing out loud and others where starting to scatter I knew that what I thought I heard was what I had actually heard.

So in the next split second I had to decide to ignore it and keep walking or stop and do something.  I couldn’t just move on, they just insulted Grace…it was my duty to stand up for her.  I turned around and approached the group and loudly said “EXCUSE ME” and then you could have heard a pin drop standing in the parking lot just off a major four lane road next to the interstate.  As calmly as I could yet with an appropriate amount anger and a large helping of ‘that’s my daughter’ I expressed how offensive and disgusting it was to hear them make fun of a person with some severe medical conditions.  ‘I’m sorry,’ ‘I’m sorry,’ ‘I’m sorry’ were the responses; I think they truly were.  I couldn’t bring myself to say anything more and left.  What I wish I could have said next was “I ask that you take this moment as an opportunity to think of all the families with special needs children, go home and volunteer with a local organization and learn about how families like mine that need help and what you can do to help them.”

It interesting that it is so easy to push down a group of people based upon a differences or perceived differences but so difficult to pull up that very same group.  Skin color, sexuality, nationality, soft pink helmets and more have been used through time to suppress rather than to enhance.

I would also like to say it was not long ago that I was one of those high school students, I’ve said things that I would now consider offensive and inappropriate.  I understand how easy it is to behave that way, I understand how easy it is to mock and belittle.  I am learning to care, I am learning to show compassion, I am learning to pull up.



This is what one of Grace’s nurses said to me tonight.  She was talking about school.  We have wanted so badly for Grace to be integrated during her school time with kids her age who can do regular 4 year old things.  We have asked, and been polite, and patient, and asked again.  Then Kevin made another polite call and all of a sudden it seemed as though we had been heard.  Grace could be in the Head Start class for 1/2 hour each day.  But evidently Grace is in there and completely ignored.  This breaks my heart.  I only want for her to experience others, to have the opportunity to learn from others her size.  We are not asking for special lesson plans or for Grace to be the center of attention….we are only wanting her to be part of the action.

What do we do now?  Surprise visit?  Meeting?  Letter?

Where is the line?  Where does politeness end?  How far can we push?  Can we trust anyone to help us fix this?  Is it fix-able?

I’m trying not to judge them – I’m not standing in their shoes – I don’t know what pressure they are under……but I can’t help but think that they are judging her.

Grace had pictures taken of her optic nerves taken last Thursday to determine if her right optic nerve was truly short, how short it was and whether or not it was degenerative.  We are happy to announce that not one but both optic nerves are in intact and neither are degenerative!

Grace will most likely need glasses but genetically speaking she didn’t really have a fighting chance.

The opthamologist will see us in six months for followup and we will revaluate the need for glasses and see if we want to proceed at that time.  Right now Grace is really defensive about her face and head so glasses would probably not be very welcome.  We will try sunglasses this summer to see if we can get her a little more used to the idea.

The opthamologist noted the differences she saw in Grace from our visit with her prior to surgery and now.  She especially like Grace’s attention and curiosity when they took her into the operating room (to take the pictures) and she was sitting up, still awake just checking out her surroundings.