I've been published!!!!!

Hercules Fence Co. here in my town has a sign marquee. Every week they put up a joke, comment or quote. In the past there was controversy over the sign. I never really paid much attention.

A week or so ago the sign said something that INFURIATED me. It was supposed to be a joke:

"What has four wheels and flies......a dead cripple in a wheelchair".

Even if Makily was not disabled I still don't find the funny part of this. I assumed the joke meant that when a disabled person died they "flew" to Heaven. I soon found out....I was wrong. A friend of mine quickly explained that was NOT what the joke meant....

So the joke originally was:

What has four wheels and flies? A Garbage truck.

Get it?

It is a truck and has "flies" ya know flies accumulate due to the rotting trash?

Obviously I don't have to point out what his version of the joke meant. This angered me EVEN MORE and so I wrote a letter to the editor about it. I didnt think it would be published as it was lengthy and they tend to like shorter pieces for that sort of thing.

Well it came out in the paper today....the ENTIRE letter I wrote...it was published as an article rather than a letter to the editor. I am so happy to see that it was published.


Here is the letter I wrote:
I have a 3-year-old daughter named Makily. She has a rare genetic condition that causes many medical and developmental problems. She is non-verbal at this point and unable to walk. We have a wheelchair for her.

It was terribly hard to order her wheelchair and even harder to see her in it.

I realize the handicapped live fruitful but sometimes very difficult lives, facing challenges to which most people never even give a second thought.

Somehow, in this day and age, it is still acceptable to mock and make fun of them.

One thing that has been very difficult for me to accept is the fact that no matter what my child accomplishes in her life there will always be someone who makes fun of her because she is disabled - whether it be a kid on the playground or a grown businessman who is too hard-headed to admit his wrongdoing, apologize and remove his sign.

My daughter's life is hard enough. Why do we have to be reminded that she is looked at as a "cripple" to some people? Why can't I drive down the street without feeling as though I have been punched in the stomach by a man who is too uncaring and ignorant to realize how much hurt he has caused so many people.

Yes, it's just a sign. He has a right to put up whatever he pleases. But joking about the handicapped is really stepping over the line. It reminds me of the common bully on the playground in the second grade.

I recently went to Hercules Fence Co., taking Makily with me along with a letter to the owner. I knew he would not be there. He wasn't taking calls or dealing with the repercussions of his sign.

When I asked the manager to please explain to my daughter why he couldn't remove the sign, he said, "I have no control over it." When I inquired if he physically was able to take the letters down off the sign himself and, if so, why wouldn't he, his answer was, "Because I have a wife and family to take care of."

I commended him, as this is admirable to me. His first and foremost priority should be his wife and children. I find it even more appalling that it seems he has been threatened with his job if he takes the sign down.

I also wonder how quickly this manager would have put the sign up if he himself had a child with severe disabilities who was bound to a wheelchair. I am sure he wouldn't find the humor in this joke.

He expressed to me many times that it wasn't directed personally at anyone. I disagree. It is directed at anyone in a wheelchair, anyone who has been called cripple. It's the joke that you would typically hear from a kid who didn't know better, not from a business owner and grown man, not from a business that claims to be "family owned and operated." It's just not a very "family friendly" sign.

I would never buy fence from a company that poked fun at the handicapped. This sign is placed right before a high school. I am sure some of the handicapped children there have seen the sign. I am sure they really appreciated it.

I would like to ask the owner of Hercules Fence this question: If your child had been through eight surgeries, multiple bouts of respiratory distress, near-death experiences and several other medical problems, if your child did have to use a wheelchair and was severely disabled, would you have put this sign up? Would you really have made a joke about the handicapped?

I have put up a link to the story that ran in the Star-Banner on my daughter's Web page. I don't imagine those who are handicapped or love someone in a wheelchair will like his "joke."

I will pray that somehow God will send him some compassion and maybe a future sign will read "I'm sorry."

Why do we have to be reminded that she is looked at as a "cripple" to some people? Why can't I drive down the street without feeling as though I have been punched in the stomach by a man who is too uncaring and ignorant to realize how much hurt he has caused so many people.

Randomness..........

I havent blogged here for a while. At times I feel like I am still pining over the same issues and who wants to hear the same crap over and over? But then again it's my blog so I guess I can do what I want.

This time of year is pretty tough on me. Part of me feels like "you have a disabled kid get over it". Then the rational side of me realizes that it's an impossibility to get over it. Every day there is something else Makily misses out on. This isnt something that will magically go away. I will always wonder what might have been. Would she be in gymnastics now? Ballet? What would be her favorite toy? Would we be potty training? These are questions that I will forever ask, they will change over time as she gets older...but the pain of those questions will remain...always. I can tuck it away most times in the back of my mind....but it's always there....hidden behind my smile, it's there. The month of April brings back so many horrible memories. It's harder to hide those feelings because I think to myself "three years ago today I was..she was....." and since she was in the NICU all of April, it's usually not a happy thought. In fact three years ago April 9th Makily had been diagnosed 2 days prior and I was insanely depressed.

It didnt help that Makily had pneumonia for Easter this year. We spent the day in the ER comforting her. She missed her first Easter because she was in the NICU and now her 3rd because she was sick. *sigh*

All that said I can't help but ADORE this child. She doesnt know all that she is missing so she continues to smile up at me while folding her hands together making herself look even more like an angel then she already does. She has the most joyful spirit. I can be a crying mess and seeing that kid smile or "clap feet" can bring a huge grin to my face. She is so amazing.

We go to the foster care orientation next week. Still not completely sure this is the way we are gonna go but I would like to get the information on it and make a decision from there. It's exciting thinking we could have another child in this house as early as December. On the other hand I am frightened of what could happen so we will see.


Makily has her Pre-K eval Thursday. I am not terribly excited about this but I know it needs to be done. I am hoping that she will get every service available and that she will possibly get a one on one aide. I plan on volunteering at the school so I will be there alot. I intend on popping in often too, I want them to know that I will be very involved and that Makily better get the proper attention and care she deserves and NEEDS. It may be as late as August that she will even start school. We will see.