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*
11 comments:
29 inches long?? Oh my! She was very long. Mine were all 22 inches and I thought that was long!
I say cope however you want/can. Unless we have walked in your shoes, we don't know how we would act. You have a great attitude!
Madie will make funny noises in say Target and Ill ask my hubby "hey, whats wrong with that kid? she got special needs?" and we just laugh and sometimes immitate madie... I say as long as she is not scrrreamin! LOL
I love the way you have put it :D what can we do but love our special girls. listen to their giggles and kiss em and shqueeze em. :)
If you were calling her names like stupid or whatever then i could see how people would feel they have the right to message you and say things.
But i have never gotten the impression that you are making fun of Taylor but always the situation. I agree how could you cope without laughter? If Taylor was a regular kid i believe she would laugh with you because we all laugh about things with our kids.
everytime Mae falls down and skins a knee or hurts herself i laugh at it and try to make her laugh so its not as painful as it is.
Taylor is lucky to have you guys because she has a pretty normal life and is living that life instead of being treated like a seriously ill child. Id rather live life then wallow!
Your a great mom and I think your style is right on track!
I love your sense of humor, its very helpful to me. Thank you.
I remember you wrote a similar post a while back. I'm sorry to hear that those people who are e-mailing you, saying that your humor is inappropriate, did not read and take heed before. You have a wonderful sense of humor, and a beautiful outlook about Taylor. Taylor knows only LOVE.
Both my Mom and Step-dad are retired EMTs, so I completely understand the dark humor used to get through life's traumas and heartbreak.
I am so sorry that some people find it OK and necessary to judge you for how you deal with Taylor's life. It is ABSOLUTELY no one else's right to tell you how to cope. It is obvious that you love Taylor more than anything and do everything in your power to give her a good quality of life, including raising her in a house full of laughter! Laughter truly IS good medicine!
I think the joke about taking Taylor to a bar with her Blue's Clues purse is HILARIOUS!!! ;-)
Keep on laughing!
I have always loved your sense of humor; even if it is dark who cares? This is the way you cope and I think it's great!!!
You know that my 26/13 year old has asperger's and it does take humor in order to survive at times. Like with Stevie, He is brilliant as far as his IQ, but will most likely never learn to come out of the rain on his own. Sometimes my ex-paramedic Boss Man has to ask Stevie for "sub titles" because he'll just jump all over the place while talking or say something out of the blue and so since we don't get it, the cue is "Stevie we need sub titles" and everyone laughs including him.
Taylors identity is not her diag of Trisomy 9p & Lennox-Gastaut seizure disorder, she is not a label; labels only belong on bottles not our children.
I would love to see you take her out to order a jack and coke and pay out of her blue clues purse, that would be hilarious. It's all part of the humor we have to share with the special needs our children have.
hugs,
kathleen
i love this, and i think you're right. the dark humor helps a TON. you need it. i do, we all do!
we have our own moments of dark humor too.
sorry i missed taylor's birthday, i meant to email. hope it was wonderful!
Now, I think if Taytay new what you were saying she might be WTF? and throw some hair pulling and make fun of you and I...lol and I like it when we talk for Taytay...that gets me everytime. I love her.
Also I live with the rain man and he buys his trains from wal-mart....lmao!!!
I am sorry if someone contacted you and criticized what you posted or said. I think we all need some humor to get through this life.
The other day, my husband bonked Emily's head on the car door while putting her in her car seat. My response? "Good thing she's already brain damaged or you would be in trouble" LOL
You gotta laugh. If you don't laugh, you'll cry. And no one likes a cry baby. ;)
Coming in late as I always do, but you've long known I've loved your sense of humor about your reality. Some of the best laughs I've had, the ones that will stick with me forever, were those made when the people I have loves most in this world died or were dying. There is such comfort in that humor, such a sense of life being good, God being good, despite the burdens we are bearing. Or maybe *because of them and maybe they aren't burdens at all. Maybe they're just heavy gifts. :-)
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