I realize that this post can’t compete with Brandy’s sister post, but I’m hoping that some video of Taylor, Brandy, & the grandkids will at least come close.
I have to thank The Bossman for taking the time to make my video look way better than it actually is…gotta love editing.
Mom gave me an idea to write a blog on Taylor’s blog from the sister’s point of view. I thought it was wonderful the hard part is figuring out where to start. So I will kind of start with the beginning and see how it goes.
I remember Taylor’s nursery like I was just there, and I was only 5 when she was born and I can tell you where her brown crib was and the beautiful silk off white bedding she had. I guess I was excited about her!!
When she was born I remember me and my older sis running in there to get her up and make her pink bottles, they were pink because she had to have medicine in them, looked like strawberry milk. Growing up with Taylor was a wonderful experience, I don’t remember all those life threatening surgeries or choices that my mom had to go through at least not till we got way older like now.
I remember trying to get Taylor to a new accomplishment, for example I was the first to make Taylor laugh and I remember every detail and can picture that moment in my head. So me and my older sis always wanted to get her to do something else, whether it was laughing, talking, standing, or walking we just couldn’t wait to get her there. I do remember teaching her to say “boobies”, I was a good sister but I wasn’t perfect. I also remember Taylor loved to stand on the furniture facing the back and we would duck down on the other side and play with her but let me tell you if she got your hair that was the end of it..ouch!
My main point with this one is being the sibling of a special needs child like Taylor we are the lucky ones, growing up with them we get to have all the fun and none of the worries like the parents do. I can’t be 100% sure but I can’t recall a time that I was ever jealous of Taylor and the attention she got, either it’s that I was so darn good or I was raised right!
I hope you enjoyed this sister blog and look out for my next one, I already have what I will write in mind!
Thanks, from the sister of Taylor
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*
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!
HAPPY, HAPPY BIRTHDAY PRINCESS TAYLOR!!!
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.
I guess it’s time to do a Taylor update. Things have been so busy here in the office that I’ve barely had time to think.
I swear, that swing has been a sanity saver for me. Of course, the days when it’s above 90 I can’t let her go out but that’s only been a few days this week.
Taylor is a weird child anyway. I know she has trouble regulating body temperature, but honestly. She’s out on the swing now, it’s 81 degrees and she has to have a blanket.
I’ve always called her my little old lady because she has to have a lap blanket on when she’s sitting in her room watching TV. It doesn’t matter how warm it is.
She just came in for a caffeine free diet coke (her drink of choice) and the box of cheese Ritz Bits to take outside. I had to quit buying the box of small packages of Ritz Bits because she learned how to open the pack by herself.
I’d go in her room and there would be 10 empty packs on her desk. Now with the box, I know when she’s getting them.
My almost 21 year old, little old lady, toddler is a funny girl and I wouldn’t trade her for the world. Even if she’s making me crazy with her increased level of big seizures.
She’s having at least 20+ big seizures a day right now. But you know what? When she’s done seizing, she smiles at me. I think she knows I need to know she’s okay. Well, as okay as she can be. How she knows, I have no clue. I just know that I need that smile when she’s done. It’s like a relief valve for me.
Taylor’s in heaven right now…diet coke, Ritz Bits, the swing, and her mp3 player. She’s singing so loud, I can hear her through the door. One of these days, I’ll have to tape her singing and share it. It’s the funniest thing…in a good way of course.
Oh yeah…what is with all the Chinese comments? Am I the only one getting a ton of them. I keep deleting because I have no clue what they say. Hell, there was one on a serious post about Taylor’s health that said “happy days are here again”. Seriously people?
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.
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