Come to the Dark Side

 I don’t know about other parents of special needs or medically fragile kids, but I use humor to cope with the many ups and down that this life consists of.

It’s what I use to get through every life-altering event that Taylor has gone through since the very beginning of her life.  We called her “stick baby” because she was almost 29 inches long but only weighed in at a whopping 5lbs when she was 2 weeks old.  Just picture a stick figure drawing & that’s what Taylor looked like.

When she was older and we could see that her skull was a little misshapen around her forehead, we called her “Frankenbaby”….with absolute love.  

Because she has seizures & loves salads, we started ordering her a “seizure salad” (think Caesar).

When she turned 21 last week, I told some people that I was going to take Taylor to a bar and order her a Jack & Coke just so I could see the bartender/patron’s faces when she paid using money from her Blue’s Clues purse. 

Now, you might be wondering where I’m going with all of this.  Apparently, some people are offended by the above things.  I’ve also met some parents of special needs kids that are so caught up in their child’s diagnosis that they forget there’s actually a child attached to whatever condition/syndrome it is.

I don’t begrudge anyone whatever it takes for them to cope.  If you don’t get my humor, that’s okay.  If you find it offensive fine too.  Just don’t tell me or try to make me feel guilty about it.  I could make myself cry every day if I just sat and thought about all of Taylor’s health issues.

I don’t want to do that for many reasons.  The main one is that it doesn’t reflect who Taylor is.  Taylor is happy.  She loves life.  She laughs a lot, hugs a lot, gets joy out of caffeine-free Diet Coke so why am I going to walk around with the “oh woe is me” face?

When I was talking to The Bossman about this post he said that police & first responders use humor to cope with all the horrors that they deal with.  The Bossman used to be a cop so he would know.  I know doctors that have that same kind of humor.  I’ve shared many a dark humorous moment with some of Taylor’s doctors.  If we heard even a tenth of the coping humor used by police, doctors, EMTs, and the like, I’m sure we would all be properly horrified.  (I’d probably laugh with them because I’m bad like that.)

I’m sure this sounds like a rant and I don’t mean it to be.  Well, maybe I do just a little bit.  I just don’t understand why these mothers that email me are so offended about how I talk about my child and deal with the stress.  If sitting around all day, constantly uptight and only defining your child by their syndrome is how you handle stress, well okay.  I’m not going to harass you about it.  I may shake my head at what you write and sigh, but that’s the extent.  I’m not going to email you and tell you that you are wrong.

I would invite you to join me on the dark side and make fun of your situation.  While some think I’m making fun of Taylor, I am not.  Fortunately for me, I think she has an awesome sense of humor and if she understood what I was saying, she’d laugh right along with me.

For those mom & dads of the specialty kids, what coping mechanism do you use?  I know I’m not alone out here on the dark side. *laughs*

Hair Washing Hell

I wonder how many mothers of special needs kids have the same problem I’ve had since Taylor was a baby.  She hates having her hair washed.  It was worse when she was a toddler.  She screamed so loud while I was washing her hair, the neighbors called the police for a “well-being check”.  I mean seriously?  She hated it that bad?  Oh she loved and still loves taking a bath, but get out the shampoo and she’s no longer a happy camper.

Fast forward a number of years and I’m a single mom working in the children’s shoe department at Nordstrom.  I work long hours.  By this time, my oldest daughter Courtney lives down the road and is expecting my first grandchild.  She watches Taylor for me.  Does Taylor cry when Court washes her hair?  Hell no!  I would do the exact same thing Court would do, and Taylor would still throw a fit.

Fast forward to now.  Taylor is 20 years old and still cries when I wash her hair.  Now granted, she did have brain surgery and does have a scar across her head from ear to ear, but I don’t think it bothers her much.  When she goes to my other daughter Brandy’s house, she even let Brandy blow dry it and use a flat iron on it.  Do you think she would let me even plug in a flat iron in her presence?  I don’t think so. 

The school would send home notes some days that Taylor’s hair was so cute.  I would have to send a note back saying if Taylor’s hair is cute, I didn’t do it, her sister did.

This has to be a “mom” thing.  You know, kind of like when your kids are so good at other people’s house and you wonder why they are monsters at home.  She must sense the fact that I’m mom and she’s supposed to cry if I wash her hair.  She grew up tactilely defensive but after several years of therapy when she was  young, that seemed to go away…except with her head.

Yeah, I know…kind of a silly post but I’m just wondering if anyone else has a similar situation.  On a good note, we got a really great swing for our deck on sale at Wal-Mart and boy does Taylor love it.  She’s been going out there everyday with her music and her magazines and just chilling.  I think that was the best spent money ever.

Taylor & Barney

 You know, I’ve realized lately that my last post didn’t quite start out the way I had envisioned.  I started off with the picture first, then the title.  When I started writing, well, you can see how that turned out so I do apologize again for a cheery title and then the downer post.

I try to limit those posts and I think that’s why I hadn’t written here for awhile.  I’m one of those bloggers who starts writing and then just lets go.  Sometimes, it’s not such a nice post.  I will say that Taylor is sick again with another bad case of bronchitis.  The doctor isn’t happy with Taylor’s increasing lung issues but I’m not going to write about that today.

Taylor started watching Barney when she was 2.  Yes, Barney the dinosaur is an oldie.  She quit watching when the show caved to all the criticism about how it was annoying for parents.  That kind of sucked for me because I can honestly say, Taylor learned more from Barney than she did from going to elementary school.

Oh how she loved those songs and learning all the motions.  She would drive us crazy, in a good way, to sing those songs with her.  You know, ones like “Apples & Bananas”, “Boom, Boom, Ain’t it Great to be Crazy, & “There Was a Hole”.  I’m not sure of the last title being correct but it was the first line of the song.

She really loved the Barney theme song and still loves to hear it.  One of her favorite Barney shows was the movie “Imagination Island”.  So the other day, when Taylor  spent the night with her sister, Brandy found it on Netflix and put it on the computer for her to watch.

Brandy had to call me so she could tell me that Taylor was going crazy with excitement.  She said she could hear Taylor all the way in the living room even with the bedroom door shut.  Of course, there was a minor downside.  Taylor wanted to keep watching it and at 11pm when she should have been sleeping, she was still laughing hysterically while watching it.

I’ve been thinking about trying to find the older Barney’s on Amazon and see if they’ve put some on DVD.  That might help with some of Taylor’s boredom now that she will only be out of the house about 3 or 4 days a week.  Maybe I can find this one too.  Taylor loved this show as well.

To say that Taylor has an eclectic taste in TV would be an understatement.  She loves “Blues Clues” and “Barney”, but you can still find her watching ESPN every day especially if there is baseball on.  She also loves “Sports Center”.  I don’t get where that one came from but then the inside of Taylor’s head is like sliding down the rabbit hole. 

She is my silly, loving, affectionate, car magazine loving, caffeine free diet coke drinking, cheese Ritz Bits eating, toy throwing in the bathtub light of my life. 

I’m thankful for everyday I can see her smiling face and get a slobbery kiss and giant hug from her…nothing better on the planet.

Seizure Salad

I'm sure you are probably wondering about the title of my blog. I have always dealt with things using humor. It just makes things easier for me. If I don't laugh, I'm going to cry and laughing happens to be more fun.

The phrase "seizure salad" came into being thanks to my brother. Years ago my brother took my girls and I out to dinner. I was a single mother trying to raise three girls, work full-time and deal with Taylor's ever increasing seizures. Taylor was having a particularly bad seizure day. She also happens to love salads. She won't eat cakes, candy, or other sweet things but she will devour a salad.

Anyway, the waitress came to take our order. As she went around the table asking everyone what they wanted, she got to Taylor and asked what she wanted. In the middle of asking that, Taylor decided to have a huge seizure. Without skipping a beat, my brother told the waitress that Taylor wanted a "seizure salad". She kind of looked at us and asked did we mean "Caesar salad"? My brother said no, for her, we call it a seizure salad.

Needless to say, we all started laughing hysterically. I couldn't help it…it was funny. The waitress laughed for a second then I guess she felt bad for laughing even though we told her it's okay it's how we deal, she wouldn't wait on us anymore. She was angry that we made her laugh at that.

So now, when Taylor has really bad seizure days, we call them seizure salad day. I'm sure that is not as funny to everyone else as it is to me, but it still makes me chuckle thinking back to that day.

It's been a rough day for Taylor today. All her seizures were big one and they just kept coming. She couldn't even enjoy the park when her sister took her today. Normally Taylor loves to swing, but not today. She just sat on the bench, seizing away.

I've decided that in the next few days, I'm going to write Taylor's complete history from birth until now. I think it will be better if I break it up into parts. It's just all in my head so it will be nice to have it written down in one place.