Top Ten List

Here are the positive things in my life that come from having a severely disabled child:

1. The scariest times in my life all concern teaching my oldest child to drive. She is now 20 and though she passed her driving tests with flying colors, she totaled her first car a few months after getting her license (she and her passenger were both unharmed). I will never have to teach The Kid how to drive.

2. Most of the time when The Kid is fussy, I can sit with him on the couch, and he will fall asleep after a little snuggling. When people say, “Don’t you just wish your baby would never grow up?” at that beautiful, peaceful point where they are totally comforted in your arms, I can say mine did not.

3. When the occasional cocktail is needed from all the stress of life, I have a bottle of vodka in the freezer, and thanks to The Kid, I have all kinds of wonderful measuring devices at hand to make my drink exactly how I like it.

4. There are multiple sizes of syringes and medical “things” in the house that seem to be used constantly for the variety of unusual situations that always arise.

5. I have a Handicapped Placard that I can abuse in situations that I should not (Please don’t lambast me for we’ve all ready covered that in other posts) and also use with guests and friends that truly need it and have been most thankful.

6. I like stupid romantic comedy films from the days of Myrna Loy and Cary Grant to the most horrid modern variety, and The Kid will cuddle up on the couch with me to watch them with no complaints.

7. I now have two children in college that expect it to be paid for without having to have jobs at the same time. The Kid will never need college to be paid for.

8. When all else fails in the kitchen, there are cans upon cans of Vanilla Pediasure in the cupboard, and it’s surprisingly not that bad.

9. I have a built in excuse to not accept any ludicrous invitation that comes my way.

10. Raising and loving The Kid has opened my life to people I would never have known and experiences I would never have had. He’s made me stronger, more resourceful and a better person in countless ways.

I know this may be horrifically non-PC, but life is good for us right now, and I am more thankful than ever to be living this full life.

What about you? What positive qualities or “stuff” has having a disabled child brought to your life?

The Beggar

One night a guy takes his girlfriend home. As they are about to kiss each other goodnight, the guy starts feeling a little horny. With an air of confidence, he leans with his hand against the wall and, smiling, he says to her,
"Darling, would you give me a blowjob?" Horrified, she replies, "Are you crazy? My parents will see us!"
Him: "Oh, come on! Who's gonna see us at this hour?"
Her: "No, please. Can you imagine if we get caught?"
Him: "Oh, come on! There's nobody around, they're all sleeping!"
Her: "No way. It's just too risky!"
Him (horny as hell): "Oh, please, please, I love you so much?!?"
Her: "No, no, and no. I love you too, but I just can't!"
Him: "Oh, yes, you can. Please?"
Her: "No, no. I just can't."
Him: "I beg you ... "
Out of the blue, the light on the stairs goes on, and the girl's sister shows up in her pajamas, hair disheveled, and in a sleepy voice she says:
“Dad says to go ahead and give him a blowjob. Otherwise I can do it. Or if need be, dad says he can come down himself and do it.”
But for god sake tell him to take his hand off the intercom...

On the way out of Trader Joe’s today, just like any day, I was asked to give money to the homeless by some strange looking person behind a little table.

“Would you like to help the homeless today?” he asked.

I just shook my head with a half smile and didn’t speak.

“God bless you,” He said.

Last week, I was pushing the kid in his wheelchair, and when we exited the store, a different man behind the homeless table said, “God bless you! You’re doing a wonderful job! You’re a wonderful mother!” And he never asked for money.

This same thing happens over and over again.

What I Want to Say:

My identity does not change when I am not with my disabled kid. I feel like I am being fraudulent to the world by doing normal things without him, sometimes. And I HATE feeling this way!

The Reality:

People don’t know I am the parent of a severely disabled child unless they see me with him, and it should NOT be the defining factor in my life. It just feels like it is.

I’ll admit that I’ve taken my son in his wheelchair to a parent/teacher conference of my other child, and I received (along with the other child) the teacher’s sympathy, but that’s pretty much it. There are not many opportunities to play the disabled kid card ;)

In my life, most people know about my son because I’ve been called away from a function to take care of him either due to illness/seizure stuff or from a nurse not showing up because… the car broke down… or the daughter might have swallowed some glass in her cottage cheese and she has to go to the ER. I’ve heard it all. Most people are surprised to hear that I function relatively normally and have such a child, but their perception of me changes, sometimes for the good and sometimes for the bad.

I have more family members that think I am making the stupidest, most selfish choice by keeping my son with me than think I am a good parent. But, you know, fuck them. Right? If I can’t let my child define me completely, than I sure cannot let them. Still… I wish I could wear a button that says “Parent of Disabled Kid; Do Not Harass For Money For Homeless.”

Goin' Postal

I had to laugh this evening after a brief conversation with a friend who also has a disabled child that needs regular, frequent medication given through a syringe.

My friend said to me:

I can only talk for a minute because I’m two hours behind in medicating my child after having friends over for dinner.

My reaction:

A long hard laugh and then my question, “Why don't we stop what we are doing and medicate our children when it just takes a second? Why do we tend to view this as a large chore rather than the thirty seconds that it truly is?"

I’ve wondered about this time and time again. It’s not the physical energy that takes its toll upon us, it’s the emotional energy that zaps us and takes years off of our lives. What a complex issue. Even with all the support in the world, it’s overwhelming and gets us.

I once heard that people at the post office go postal because of the mail… it never stops. It just keeps coming. Is it any surprise that parents of disabled children go “postal” sometimes? It never stops…