Monday, August 23, 2010

Come to the Dark Side

dark_humor 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*


Wednesday, August 18, 2010

Happy 21st Birthday Taylor Marie!!!

Taylor Taylor helping decorate her cake @ preschool for her 3rd birthday.

Wow!!!  It’s hard to believe my baby is 21 years old.  While she doesn’t act 21, I’m amazed at how far she has come.

She exceeded the doctors’ expectation of how long she would be here.  How many times were we told she wouldn’t live past a year old?  How many times were we told that this “event” is probably the end?

She doesn’t know she isn’t supposed to be here.  She’s stubborn.  While that stubbornness can be difficult when dealing with a 6ft. tall toddler…that same stubbornness has made her determined to live her life to the fullest.

So keep on being stubbornness Taylor!!!  We love you like crazy and Mommy needs you to hang around!


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Monday, August 16, 2010

Reflections on the Past 20+ Years

Taylor at Erics Taylor’s 21st birthday is fast approaching…just a few more days.  Her upcoming birthday has had me reflecting on the last 21 years.

We went from a baby we thought was perfectly healthy to a baby who had less than a year to live.  Obviously, she showed the doctors never to underestimate her desire to live in this world.  Though we are in an uncertain time concerning Taylor’s health, her seizure activity continues to take more & more of her abilities, I will never discount Taylor’s will to live.

I would love to say that the past month has been fantastic but it hasn’t been.  Taylor has more and more days that are one seizure after another.  Those days make we want to just curl up, hang on to her, and cry.  But we don’t do that because no matter how many seizures, Taylor smiles.  At the end of the day, Taylor is happy and really, that’s all any parent could ever hope for.

I read the blog of a mother who recently lost her daughter.  Her daughter was just a few years older than Taylor.  The grace & beauty with which she is handling her grief is what I would strive to do. Click here if you want to read her blog firsthand.

My journey with Taylor has been filled with many, many ups & downs.  There have been many close calls when we gathered to say goodbye to her , only to have her once again, smiling & happy.  I would never wish those hard times on any parent but I would wish a child’s smiling happy face no matter the situation to ever single parent out there.  To those that have special needs kids and those that do not.