Summer Summer Summertime

A perfect summer day is when the sun is shining, the breeze is blowing, the birds are singing, and the lawn mower is broken.  ~James Dent

I've always loved summertime in North Carolina. Growing up, it was my favorite time of year...and not because there was no school. It always seemed sort of magical to me. But maybe that's just what it feels like when you live out in the country. The hot, humid days. Blaring the car radio to your favorite tunes. The cookouts. The pesky mosquitoes and what's left of the butterflies from the spring. The wonderful smell of honeysuckle coming from the woods. The long days and the warm nights hanging out with your friends and your honey. 

Tonight as I was leaving the rehab facility that my Granny is staying at, I witnessed a beautiful sunset. Every summertime memory I have ever had in NC came flooding back to me at once in a wonderful nostalgic moment...as Guns N' Roses' Sweet Child o' Mine came on the radio. Man oh man, the memories of a childhood long forgotten crept up on me!!! Wonderful memories. I truly don't have any bad memories from my childhood. I'd love to be able to relive my youth again and experience one more time all the memories that flooded my mind tonight. 

Yes. Summertime is STILL a magical time of year!!

I Have A Dream, Too!

People all over the country are celebrating the anniversary of the iconic 1963 civil rights march on Washington, DC and Martin Luther King Jr.'s famous speech. He gave the speech to a crowd numbering in the tens of thousands at the Lincoln Memorial in Washington D.C. His powerful words are now considered one of the best speeches ever given in American history. And, while most people are only familiar with the "I have a dream" portion of his speech, the entire speech was extremely profound. You can read it here.

America has come a long way in the past 50 years ago since that speech...and in the 150 years since Abraham Lincoln's Gettysburg Address speech. But there is still a long way to go. 

• I have a dream that members of the LGBTQ community will one day have the same rights as their fellow heterosexual brothers and sisters and they will be one day looked at by the content of their character and not by their sexual orientation. 
• I have a dream that one day this world will not be strife with war, but will be swarmed in peace, harmony and tranquility. 
• I have a dream that senseless suffering of our fellow peoples through illness, hunger and homelessness will end.
• I have a dream that people that are suffering will not be looked upon in the streets with disgust as if they have leprosy. 
• I have a dream that everyone with a disability will be looked upon as equals in comparison with their able-bodied counterparts...that they can get a job that they are equally qualified for and that they can participate in activities and enter buildings without any barriers getting in their way. 
• I have a dream that Congress and the sitting President can one day soon come to an agreement on what is best for our country, the people, instead of dealing with the Republican/Democratic lines and who is right. 
• I have a dream that little black poor gay Baptist boys and girls will be able to join hands with little white rich straight Muslim boys and girls as sisters and brothers!!!

When all of this happens, we will truly be able to join hands as a nation united and sing the words: 

        "Free at last! Free at last!

        Thank God Almighty, we are free at last!"

I Like The Way You Twerk It

Two words: Miley Cyrus. I will be the FIRST PERSON to admit that I am not a fan of her. But, why on Earth are so many people "shocked" by her antics? Has anyone never heard of publicity? Gimmicks? Yes? So, why then, are you so damn shocked at Miley's performance at the VMAs? 

Let's first start with the VMAs. It IS the VMAs. Ever since the very first VMAs in 1984 when Madonna performed her new hit, "Like A Virgin", the VMAs have THRIVED on shocking performances. Remember THAT performance? Madonna performed the song (that she wasn't suppose to perform because of it's racy lyrics) wearing a bustier and part of a wedding dress. She 'grinded' on the stage floor suggestively, revealing lacy stockings and a garter. People were SHOCKED. In 1989, Andrew Dice Clay was the host. What was MTV thinking when they decided that? They KNEW his routine of "dirty" nursery rhyme jokes! His jokes got him banned from MTV....FOR LIFE! Year after year, there have been outlandish outfits (Think Lil' Kim and her tit being exposed while Diana Ross fondled her or Lady Gaga's now infamous raw meat outfit), performances--both the aforementioned "shocking type" and the amazing performances that are too numerous to mention. The disputes (Axl Rose and Kurt Cobain or members within their own band like Poison). The Antics (Kanye West interrupting Taylor Swift's acceptance speech). The list goes on and on! The VMAs are MEANT to shock and leave people wondering, "What the hell just happened?".

But back to Miley. She is no stranger to the limelight. Her father, Billy Ray Cyrus was a huge country star in the 90's with his cheeky hit, "Achy Breaky Heart". Her family has been in the tabloids since then. She grew up as a child star on the Disney Show, Hannah Montana. She IS Hannah Montana, isn't she? No, that is a character she played on a Disney TV show. It does not define her real life persona. Just because she dances around half naked on a stage doesn't mean she's a whore or disgracing her teen fans. (Just like Justin Bieber's recent stints in the news don't mean he is letting his fans down.) They are KIDS.....young adults. Trying to do whatever they can to make a name for themselves in a cut-throat business. Is the way they are doing it right? Only time will tell. They ARE still relevant to their fans. 

Adults are concerned that they (Miley, Justin and the others) are no longer good role models for their children. Shame on those parents. Celebrities are just people like the rest of us folk. They just happen to have a talent that attracts millions of people and earns them millions of dollars. They never set out to be role models. Role models are soldiers....police officers....firemen....NOT celebrities!!!! So stop saying that Lady Gaga, Justin Bieber and Miley (and Lindsey Lohan and and and....the list goes on and on) are poor role models for your kids. They were NEVER role models to begin with!!! They are just people doing what they think they should do to make a name for themselves. It goes all the way back as far as Elvis Presley (and probably farther back than that) with his dance moves and wiggling pelvis that they wouldn't show on The Ed Sullivan Show because it was feared that it was too suggestive for teens to see on TV. It's a phase. They are only dance moves. Gimmicks. There are bigger and bigger ones every year. So why are you all so shocked? Surely you haven't forgotten all the risque performances from years past. Get a grip and lighten up!!!!

In case you have lived under a rock and didn't see it, Here's Miley Cyrus's performance this past Sunday at the VMAs....Yea....it's stupid and disgusting. But, she's having fun. She's young. It's what she wants to do right now. 

Perspective

Those that know me well would say that I am not shy at all. That I am very outgoing and talkative. I hear that all the time. For the most part, it's very true. However, when I come in contact with someone new, it takes me a while to warm up to them. I'll always smile at them and speak. But it's a very quiet whisper of a "Hello". 

This has been very true while my Granny has been at the rehab facility. Obviously, over the past several days I have come in contact with a LOT of new people. I should say, with all of the nurses and therapists, I have been completely vocal and outspoken in my praise or complaints with them. They will either love me or hate me (and my mother) by the time Granny leaves. But that's okay. They WILL remember us. I have gone every day to see my Granny since I have been here in NC and I have spent several hours with her each day. Today, I helped feed her and I really enjoyed my time with her. I think she's doing much better than she was and she's MUCH better at feeding herself than she was when she got there. She's been spending some time in a wheelchair because she is too weak to stand right now. So, I showed her today how to push herself up on the armrests so she can sit up better. I loved watching her later as she actually remembered what I had taught her and utilized it to the best of her abilities. 

Granny's "roommate". I don't like her. I don't know her. I will not try to get to know her and I will not try to like her. It's not one thing either. It's a multitude of things. I just do not like her. That's okay though. We aren't meant to like EVERYONE we come in contact with, right?

On the other end of the spectrum. The "little old man across the hall". OMG!!!! He's the cutest, most adorable old man I have seen since my own Papa. I'm seriously in love with this little guy!!! He's the sweetest man and I think he's sweet on Granny too. :) He comes over SEVERAL times to see her and to talk to us while we are there. He plays with Mom's little dog (dogs are allowed at the facility) and then he goes back to his room across the hall. A little while later, he comes back to see all of us again. His fashion sense is a bit off...but that just adds to his cuteness! I enjoy his brief visits when I'm there. 

Now, the whole reason I'm writing this entry is for another resident of the facility. It's another cute elderly man that I see every single day too. This man happens to be black. He is in a wheelchair and every single time go see Granny (and leave), he's sitting in his wheelchair outside in the shade. This man (I don't know his name---yet) always waves at us. Me being the person I am since I don't know him, I just look his way, smile and nod my head. He continues to wave that hand and smile a pretty smile. He seems so happy. He never speaks though. So, I'm thinking he's shy like me because he doesn't know us well. I've never seen anyone visit him yet. But I'm not there all day. So hopefully, he has lots of visitors. 

So, today, I am feeling really good about my visit with Granny. Her therapy is going well. I gave her tips that she uses with her wheelchair and I helped her eat. And she ate pretty good while we were there even if she didn't particularly like what they had for dinner (some kind of spaghetti/Beefaroni looking meal). So, as I said, I felt good about my visit with her. I didn't get to see the man across the hall on my way out because his door was closed. But I silently thought to myself, if that other guy is still outside, I'm gonna finally speak to him! He was there and as soon as he saw us he throws his hand up and starts waving and smiles one of the biggest smiles I've ever seen before. So, I look at him smile and wave back and I say to him, "You have a good night, Sir!" And I realized it at that moment. He cannot speak. This man that is so happy, so vibrant and full of life with the biggest and prettiest smile ever. He cannot talk. At all. He just makes clicking noises. I get to the parking lot and I just fucking LOSE IT! Why do we bitch and complain about life so much? There are many residents at the facility that are sour pusses because of their situations. But not this man. He cannot speak and he is STILL so happy. He speaks with his facial expressions. I truly hope he doesn't have family that thinks, "Well. He can't talk. So we don't need to visit him....what's the use?" Fuck that. Maybe he cannot talk. But he can still communicate. I know every day that he is telling us "hello" and "bye" and he is telling us to "have a good day/night" just as much as we are telling him to. He just says it in a different way.

It took me a good 10-15 minutes to stop crying. Even now, several hours later as I write this, I'm still emotional thinking of him. I just took it for granted all these previous days that he could speak. I still feel bad for him. I don't know what happened to him. But whatever blow life dealt him, he is certainly dealing with it well. I don't think I have seen anyone that seems so happy. And THAT's perspective. We'd expect him to have a shitty outlook on life. But no. He's as happy as a lark. 

I can't wait to go back to see Granny again tomorrow. I can't wait to see the cute old man with horrible fashion sense that has a crush on Granny. And I can't wait to "talk" to the little old man sitting outside in his wheelchair enjoying the last days of beautiful summer Yanceyville weather.

I think it's going to be a little harder going back to Tampa this Sunday. I have learned a lot about myself and about life during this trip. Folks, please don't take the elderly people in your life for granted. They still have so much to teach you even if they are in the winter of their life. You just have to be willing and patient enough to learn it. I think I have a lot to learn yet.

Seasons Change

Seasons change....Spring, Summer, Autumn and Winter. We know they do. But there are other "seasons" that change also, in the proverbial sense. There are seasons in a humans life as well...and each one relates to the temperate seasons in different ways. There is: Newborn and infancy, toddler, adolescent, teen, young adulthood, adulthood, middle-age and elderly. And each one can be broken down into other "sub-seasons" of a person's life. It's a fact of life. And no amount of vitamins, exercise, healthy eating or prayer will slow down or stop each season of a person's life from coming...just like we cannot stop Spring, summer, fall and winter. No matter how bad we hate or love them, the seasons are sure to change without our permission. Sometimes, without our even realizing it. It's Summer, you're on vacation at the beach with your children and the next thing you know, it's Autumn and the first day of school. So, too, do the seasons of life occur just as quickly. You are holding your infant in your arms listening to him/her coo and gaga. The next thing you know, your little infant is in college as a young adult...even quicker, he/she is married and expecting your first grandchild. 

I was reminded of all of this yesterday. Visiting with my granny in the rehabilitation facility that is suppose to help her regain her strength. She is almost 96. This is a woman who has always been so independent. She took care of my Papa for many years before he passed away. She's traveled much and is a God-fearing Christian that has spent many Sundays and Wednesdays at her church. She raised 4 children (one died during his adolescence) and was married to the same man for more than 50 years. She drove well into her 80's without any problems whatsoever. As her eyesight began to deteriorate, she gave driving up on her own. Now, she is in the "Winter" of her life. She cannot get up on her own. She can no longer see the food plate in front of her well enough to eat on her own. It breaks my heart to see a woman once so vibrant and lively now like this. 

Last night 2 of the dearest friends I know came to visit me while I am in NC. I haven't seen them since March...Beth, Jason and their 5 year old daughter, Isabel. This time they brought their 4 week old baby boy, Evan. Such precious children...vibrant and full of life. I enjoyed seeing Isabel dance to my "Bow-chica-wow-wow" ringtone. I adored holding Evan as he kicked and cooed and smiled and, yes, cried, too. Evan and Isabel are both in the "Spring" of their lives. 

It's a bittersweet moment to see your once vibrant and full of life grandmother now in the winter of her life. Then hold a 4 week old baby with so much promise and future ahead of him in the spring of his life. 

Very bittersweet. C'est le vie. 

Sweet Home Florida

So, tonight I'm sitting at home at my Mom's and watching Sweet Home Alabama. I can't help think about how much I sometimes feel like Melanie Carmichael/Smooter. When I come "home" to NC from my "home" in Florida, I just get right back into the swing of things without missing a beat. "This fits too." It does. Both my life in Tampa and my life in Yanceyville fit me perfectly. No wonder I love both places so much. The city girl in me LOVES LOVES LOVES the fast paced city life of Tampa, Florida. But the feisty redneck country girl in me LOVES me some Yanceyville too (or Amityville, as one of my friends calls it because there is nothing around except woods, trees and old abandoned barns and houses--just like in "The Amityville Horror" movie :-) )!!!  

One of the main reasons I feel a parallel to Sweet Home Alabama and poor old Melanie is the relationship department. I discussed relationships in my last entry. When I was 18, I met this guy in my Advanced Biology class in my senior year of high school. We were in the same lab group and I became quite smitten with him. But I was graduating HS and he still had another year left. I knew it wouldn't work. During the summer after graduation, I worked at the school in the guidance office. I helped all the students for the next year with their class selection. Low and behold he walked in to change his classes for his senior year. We talked a bit and exchanged phone numbers. Pretty soon we were dating. We ended up dating for nearly 5 years. We became engaged and lived together. He truly was the love of my life. But all good things must come to an end, right? So many things worked against us though. It just wasn't meant to be with us. We broke up. I was devastated. 

But I went on with my life. I was determined to. You never get over your first love--the one you've given everything to. And I didn't get over him. He became a part of me. I never forgot him and I often wondered how he was doing and where he was in life...and if he was happy. That's all I ever wanted--him to be happy. Even if that meant he wasn't with me. But, I digress. As I said, I DID get on with my life. I dated others...and I got married eventually. 

My marriage lasted for 4 years before I told my husband that I wanted a divorce in 2010. I don't think I EVER loved him....not the way a wife is suppose to love her husband. If I did, I would have moved heaven and Earth to make it work. My goal was to be married by the time I was 30. He asked. So I said yes. Even when we were dating I knew things weren't right. He always kept secrets and talked a little too inappropriately to women. OK. A LOT. Call me crazy, but when you're married and your wife is screwing you on a regular, I just don't think you should be asking other women to fuck you too. "Forsaking all others"???? I found the texts, the emails, the pictures....it was disgusting. But I thought it was my punishment for marrying someone that I truly was NOT in love with. I had decided that THIS was how I was going to spend the rest of my life. {SIGHS} We moved to Florida to get away from it all and to give it another shot. My idea. 7 weeks later, the asshole is STILL trying to hook up with other women. Don't know if he ever succeeded. If you're hiding your emails and texts, you're cheating. Maybe the penis did or didn't touch another vagina, but you're sharing things about yourself that you should only share with your spouse. You're cheating. "I want a divorce. I'm tired of living like this. I don't love you anymore. I want a divorce."

Nearly 6 months later, I'm leaving my apartment in Florida to run an errand and I run into an old familiar face. My ex from high school!!! What???? Why is he in Florida?! Turns out he had lived there since 2004!!!! Long story short (well, this one, anyway), we basically started dating THAT NIGHT. It's been 2 years now. He is STILL the love of my life!!! I'm pretty sure that I'm his too. :) We have an awesome life together now and I fully intend on marrying him just like I should have 14 years ago. 

I'm his Melanie...He's my Jake.......We have our own Sweet Home Alabama.....Sweet Home Florida. Love you, Baby. I will be home soon. 

Love, Sex, Relationships and SB---In My Experience

Don't worry. I'm not going to get all graphic here. After all, my mother reads these entries! :) I started to write this 3 days ago and just haven't had the time between travelling from Florida to NC and visiting with family. I just thought I would give my perspective and maybe help some other people out there with disabilities. 

First of all, society is retarded. (I don't mean to offend anyone by using that word. But in this instance, it is entirely true.) For what ever reason, society has come to the conclusion that people with disabilities are completely asexual. You know...We aren't attractive. We don't have relationships. We don't have sex. And God forbid, we don't procreate. Guess what? That's the biggest pack of lies you will ever hear. Don't believe it!!!! 

Now, I will admit, it is NOT easy to date when you're in a wheelchair. But it's not easy when you're able bodied either. Finding the special someone is difficult for everyone. But, throw a disability in there and it's a bit harder. I will be completely honest. I did not date at ALL until I was 19 or 20 years old. That guy I was with for 5 years and we even got engaged and living together..and through some weird twist of fate, after being a part for more than a decade, we have been reunited and happy together for the past 2 years. 

Up until I met him, I never dated. I had plenty of friends and crushes. But no one would ever ask me out. Many people are afraid of disabilities since they don't know anything about them. So it truly does take a special guy or girl to ask out some that has a wheelchair. After my boyfriend and I broke up, I had more confidence to assert myself. After dating him, I realized I COULD be seen as attractive and there WERE guys that wanted to date me. They just needed the push. So I flirted more with other guys to let them know I was available and interested. It helped!!! 

My experience with guys is limited, yes. But I'd rather have a few experiences than a bunch of crappy ones!!! I've gone out with maybe 10 guys. And I ended up getting married too. Wha????? The crippled girl can get married?! Shocking, I know!!! Even more shocking(Sarcasm), like nearly 60% of the population, I also got divorced. I won't go into that. It was regular couple issues. The divorce had nothing to do with me being disabled. We just weren't right for each other. After 4 years, we called it quits. OK....I called it quits. Whatevs. 

Now, about that S word.....SEX.......Yea, there may be people out there that cant partake. Please don't assume that just because someone cant walk they also cant have sex. I can speak for myself and many other folks within the disability community and tell you that we CAN AND DO have sex. I wont go into those details either....But I bet we do it the same way you do. :) And we can have babies.....able bodied babies....the traditional way....or in vitro....or through adoption. We have the same options as everyone else. 

As I have said in so many of my other entries, WE ARE NO DIFFERENT!!! We have the same experiences as you. The only think holding us back is YOU.....Or people like you. Society really needs to stop assuming what we can and cannot do and just let us show you. Some of us (ummmm, not me---anymore) have self esteem issues. We feel unloved because we have never really had someone (other than family) to tell us we are beautiful and fall in love with us. Society fears us. Well, not all of society. Some of us, me included, have been so wonderfully lucky to find someone that looks past all the scars, the wheelchairs and other adaptive equipment. They see the heart and the personality and give us a chance to love and be loved. I hope you will too. 

Or if you're the one with the disability, I hope you will allow yourself to open up with whomever you're attracted to and be willing to put your heart on the line. You may be hurt. But that experience doesn't mean it occurred because you're handicapped. Everyone gets hurt. You'll never know what it's like to truly love and be loved until you've been hurt. You must put yourself out there though. You wont find you're soul-mate by being stuck in the house and not out meeting folks. Just don't give up on love. Everyone deserves it no matter what their age, sexual orientation, race or disability. And as cliche as it sounds, it really will happen for you when the time is right. 

Inspiration Porn

Inspiration PORN. I'll Bet that got your attention. Don't worry, the following entry is not an NC-17 entry. "Inspiration Porn" is the phrase many use within the disability community to describe an image or meme of a person with a disability doing the most ordinary tasks like playing, or talking, or running, or drawing a picture, or hitting a tennis ball - carrying a caption like "your excuse is invalid" or "before you quit, try". Often the caption reads, "The only disability in life is a bad attitude". 

Im not sure what the intention of inspiration porn is......but in my opinion, it's anything BUT inspiring. It plays on the guilt of the able-bodied individual viewing and objectifies the ones with disabilities. What do you think of when you see this picture? I will almost bet a million dollars that you saw it and thought, "AWWWW!!!! Look at that adorable kid trying to run a race even though he has no legs!!! {sniff, sniff}" Screw you. I see a cute kid and nothing else!!! 

Let's be clear. It's really NOT your fault if you did see a kid with prosthetics "trying" not to be different. It's what society has put in your mind to see. Even The Jerry Lewis MDA telethon that has been on for years every Labor Day objectifies disabilities. Sure, they do a great thing by raising money for a wonderful cause. And I remember I was a kid that use to watch it regularly every year because there was one day that handicapped kids were on TV. Then....I was about 13 when I realized those kids are being completely objectified. I'd see each child doing the most mundane things that any able-bodied person can do (like me) and I thought...."what's the big deal about that? Why is this Earth shattering news?" It shouldn't be. Jerry should not be "pimping" these kids out like that, playing on people's emotions and guilt to raise money. I don't ever want someone to think, "Dag......I hate it that Dawn can't walk and has to spend the rest of her life in a wheelchair. Let me give 20 bucks to the Spina Bifida Association." Fuck you and keep your money. If you're going to give money to a charity, it should be because you genuinely believe in it and you want to prevent whatever affliction the charity is working for. 

I have had thousands of people telling me that I am inspiration to them...that I inspire them. When I first heard it as a child, I thought it was cool....I didn't realize what they were REALLY saying to me. As I got older, my response changed to, "Um.....Thanks." Because I didn't know what to say. Now, I will ask simply, "What do you mean by that?" I do not want to be your inspiration if it's simply because I'm handicapped and I still manage to get out of bed every morning and live my life without literally falling on my face. I swear I can do anything you can do....I just do it sitting down. There is nothing inspiring about that. Why is it inspiring that I do exactly what you do in the seated position? It baffles my mind when people say to me that I inspire them......to do what?

As I said earlier, it's not entirely your fault that you view people with disabilities differently. It truly is that of society. You don't see people on TV in wheelchairs often...and when you do they are sometimes played by someone that is capable of walking. Think "Glee". If a disabled person were to try out for a role in which the character is in a wheelchair, they are often turned down because they are "too disabled". So they choose to hire a big name actor/actress to play the part. Then they have to hire people to TEACH the actor how to be handicapped. Wha????? Even our government is behind. It wasn't until 1990 that the Government decided to protect the millions of Americans with disabilities from discrimination and civil rights violations through The Americans With Disabilities Act of 1990. How many millions of people were born with disabilities before that had to occur?

I do not want to be your inspiration....not for being in a wheelchair, anyway. I am simply living my life. And I'm living it the best way I know how and the way my mother taught me to do so. I DO want to inspire other disabled people to realize that they CAN live the life they want. But I do not set out to inspire you. So please find another inspiration. Im not it. Im simply Dawn....living my life. 

Mama Said...

You may have read here all about my disability, Spina Bifida, and I appreciate your interest and sharing of my entries. My disability does not define who I am as a person. I feel I am defined by my actions, personality and upbringing, and my own thoughts and feelings. SB is just a small part of my life and I never really intended to devote so much of my blog to it. But I feel that I have a certain responsibility to inform and educate anyone and everyone that will listen. It is for this reason that this blog is also devoted to my Spina Bifida....in a different way. 

I wanted to let everyone know what the greatest gift my mother gave me as a child was.  It's not specific to Spina Bifida. I feel this is a gift that everyone deserves to give their child whether they have any form of disability or they are perfectly able-bodied. The gift is independence. 

Now, what do I mean by that? I mean exactly what I said. My mother taught me how to be independent, DESPITE the fact that I have a disability. It was very important to her that I learn to do as much for myself as I possibly could do....wheelchair or not. Disability or not. I was treated no differently than my 2 older brothers in that aspect. If I wanted a sandwich or a drink, I had to get up and get it myself...just like my able-bodied brothers. Her point was that she (nor my brothers) would be around forever to cater to my wants and needs. I should learn to take care of myself. 

I went to "regular" school and eventually to college. I had friends and sleep overs and though it was minimal, I dated and had boyfriends. I learned to take care of all of my personal care needs like bathing and dressing. And when I had to start being catheterized to empty my bladder, I learned how to do that immediately too. I learned to cook and clean. And I learned how to drive a car with hand controls and how to get my wheelchair in and out of my car all by myself.

Other than having Spina Bifida, my childhood and teenage years (and now my adulthood) was no different than that of my friends. I STILL pride myself on my independence. My mom's point all those years ago was that she wouldn't be there to do it for me; so I should learn to do whatever it was on my own. Now, when I find myself in a sticky situation, I just sit back and think it through and say to myself, "Okay, Dawn. What would you do in this situation if you were alone?" And eventually I figure it out for myself. I do not like to ask for help. But when it's offered, I'm not bitchy about it either. I will decline it nicely or accept it willingly depending on the situation. 

If you are reading this and you have a child with special needs, PLEASE hear me out.....TEACH YOUR CHILD INDEPENDENCE! Teach them how to take care of themselves in the real world. You will not always be alive to take care of them yourself. Give them the gift of independence. If you cater to your child's every whim and need, you will cripple your child far more than any disability ever could. I know many parents of special needs children that wish now they had taught their kids to be more independent. Now they are left with grown adult children still living in their home. Yet they have all the potential in the world to lead normal, every day lives with a job, house and families of their own. Even if your child has limited capabilities, still teach them what they CAN do. Don't let them (and don't you) settle for anything less than that. You're doing a disservice to your child if you do. In teaching them independence, also teach them to be gracious when help is offered. The last thing this world needs is another hateful asshole with a disability and a chip on his/her shoulders.

If you are someone with a disability and you believe you have been hindered and not "allowed" to fend for yourself, ask for help. Talk to your parents. Tell them you WANT to learn and that you ARE capable of learning to care for yourself. If they won't help you, ask a sibling or other trusted family member to help teach you. Ask a family friend. Ask a best friend or their parent to teach you if they are willing....even a teacher at your school or a counselor. I promise, you won't regret it. :-) 

And that is all I have to say about that! 

I'm Only In It For The Free Parking...

"I'm Only In It For The Free Parking" is my absolute favorite thing to say when someone asks, "Why are you in a wheelchair?" My 2nd favorite answer? "Nothing. They just don't work." I say that when someone asks, "What's wrong with your legs?" Let's be clear. I do not always give smart ass answers about my disability. 9 out of 10 times, I will give a straightforward answer. I only give the ridiculous answers to the dumb ass people that ask dumb ass questions about my disability. I shouldn't call these people dumb asses. I realize that when you don't know about something, you may be uncomfortable with it. Therefore, you just don't know how to correctly broach the subject. I do get that. But I get aggravated by the way some people ask me things....like they are afraid I don't know I'm in a wheelchair. Everyone is different. For me, a couple of good questions would be, "What caused your disability?" And depending on the age of the person asking, "Why are you in a wheelchair?" is a perfectly good question. Kids ask that a lot, along with "What's wrong with your legs?". And since (again, depending on the age) children may be too young to learn about Spina Bifida or paralysis, I will just simply tell them that "my legs were so broken when I was born that God just couldn't fix them. But it's okay. I'm fine with it." 

Kids are so adorably curious! They want to know about EVERYTHING!!!! They are so young and innocent and haven't yet been jaded by life's cruelty. I LOVE the wonderment in their eyes when they are asking about my disability. Wanna piss me off when your child asks me about my disability REAL quick? Tell them, "Shhhh....don't ask that! I flat out told a woman a while back that told her 6-7 year old daughter not to ask questions, Please don't tell your child that. She wants to learn. Don't be afraid of what she wants to ask or learn. Be afraid when she no longer does." Then I told her daughter all about my "broke" legs. The child was happy as a clam with my answers and the mother looked quite embarrassed. Good. She should be. People, don't tell your kids not to ask questions. I know I'm in a wheelchair. Your child asking isn't going to suddenly make me aware of it and cause me to freak out. Your child is being curious. Let them be. 

I do hate the stupid comments from adults though. They run the gamut from "Gee, you're lucky to always have a seat" to "Ya got a Hemi on that thing?!" UGH People think they are being so damn cute and original. But really, it's annoying and I've heard them all a million times....including the racing ones. Still, I just smile and say "YEP!" I've learned that it's easier to just answer them and just move on. I absolutely despise when someone wants to "pray" my disability away. If it were that easy, I wouldn't be in a wheelchair at all. Saying that to me will damn sure find you getting told off by me. There is nothing wrong with me or the fact that I have Spina Bifida. I am not being punished by God for my families wrongdoings, either, by the way. You'd be shocked what people will say to you!!

I do not regret my disability and if given the chance, I would not change it. I have met more people and experienced more in my life BECAUSE I have Spina Bifida than I ever could have if I was able-bodied. I love my life just the way it is. I have a compassion and empathy for others that I'm sure I wouldn't otherwise have. I am open minded and I believe in equality for everyone. I don't think someone's quality of life is lessened in any way by being disabled, gay, black or Muslim. We are all one. We're one. But we're not the same.

SB 101

I was born with myelomeningocele (pronounced "Milo My Ninja Seal") Spina Bifida at the L1, L2 region of my spine. You can read all about the different forms of SB here. This means that the Spina Bifida lesion on my spine was in the lumbar region at the 1st and 2nd vertebrae of the lumbar region. I am paralyzed from my knees down. I use to walk with leg braces and crutches until they started to cause pressure sores, or blisters, on my feet. So I decided at the age of 12-13 to just use my wheelchair permanently. I don't regret that at all. For me, it is what it is. Braces or wheelchair---for me, it doesn't matter how I get around as long as I do. And, truthfully, the wheelchair gives me a certain independence and speed that leg braces just could not do. 

In 1975, they didn't really have the technology they do today with ultrasounds and such. So no one knew that I would be born with SB until I was actually born. I still moved around inside mom's belly just like my brothers did before me. They don't have SB, by the way. At birth, the lesion in my spine was repaired as much as possible and my back was sewn shut. I developed hydrocephalus when I was 10 days old and the VP Shunt was put in place on the 11th day. It was revised again before I was a yr old and hasn't been revised or used since. I still have the same shunt today and it's still not in use. In all, I have had over 50 operations in my life. Literally from head(the shunt) to toe(to straighten my big toe) and everywhere in between. However, I don't have that many scars. Some of the surgeries were redone. Because of so many hospital stays and doctor visits, I am severely allergic to ALL latex products. 

I went to school just like everyone else and had someone assist me in getting to my classes with my books until my senior year when I chose to go at it alone. I never had any of the comprehension or learning issues that are sometimes common with SB. In fact, I was an A & B honor roll student with the occasional C in math. No one ever ostracized me or teased me because of my disability(that I know of, anyway!) and I always had a ton of friends...still do to this day. Socializing is something that has always come very easy for me. 

Now for all the yucky personal stuff related to Spina Bifida. YES!!! I CAN have sex. I have been told that women with SB have multiple orgasms easier and more frequently than women without SB. I don't know if it's true. I only know of my experiences. All my life, I have dealt with the urinary and fecal incontinence that is so common with SB. Urinary incontinence is most often controlled by using a urinary catheter and inserting it into the bladder to empty it of the urine. I do this every 4 or 5 hours. Fecal incontinence...Ugh.....no one likes talking about shit, right???? Oh well, Its a must in this case. Yes, I suffer through it as well. People with SB often lack the ability of being able to "hold it" when they have a bowel movement. So "accidents" do occur. Yes, it can be embarrassing and it can fuck up your entire day....but Shit Happens...You deal with it and move on. I am, however, very careful about what I eat when I'm around friends and family that have not dealt with this issue to spare them of it. I do the same if I'm out somewhere and they don't have wheelchair accessible bathrooms. 

Now for all the important information and statistics to tell you exactly what SB is now that you know how it relates to me. There is no treatment or cure to get rid of it. Once you're born with it, you have it for the rest of your life. And it affects your life and that of your loved ones in a way that you can't imagine unless you do have it yourself. Its a lifetime financial cost of $532,000-$1,000,000....much of which hasn't always been paid by insurances because of the "pre-existing condition clause" that use to be in effect before Obamacare. It's urinary and fecal incontinence for most. It's pressure sores and shunts. It's deadly infections. It's a lifetime of surgeries, specialists and doctors' visits. It's deadly allergic reactions to latex for most. It's kids suffering ostracism from their schoolmates for "being different". Its mental and social issues for some. Its a minimum of 166,000 living with this disability in the US alone. Its abortions because moms cant handle dealing with these issues. In fact, according to a recent Wayne State University study of several countries, the study found that 64% of the children diagnosed in utero with Spina Bifida were aborted. 64%!!! There is no KNOWN cause. There are only hypothetical guesses as to why it occurs. It's an average of 8 babies per day in the US born with Spina Bifida or a similar defect of the brain or spine. Its that Hispanic mothers are 1-1/2 times more likely to give birth to a child with Spina Bifida than non-Hispanic Caucasians. It's the most common permanently disabling birth defect in the US--its more common than Muscular Dystrophy, Cystic Fibrosis and Cerebral Palsy(which are all well known and advocated for disabilities) combined. Currently, there are about 3.5 MILLION people with Spina Bifida in the world. Folic acid MIGHT HELP prevent it by as much as 75%. But there is no guarantee. 

So----what is "it"????? Spina Bifida is a neural tube defect that occurs when the spinal structure fails to form and close properly. This occurs in utero during the first 2-4 weeks after conception, before most women even know they’re pregnant. There are 3 main types of Spina Bifida: Occulta, Meningocele(pronounced like "my ninja seal"), and Myelomeningocele(pronounced like "Milo my ninja seal"). Occulta and Meningocele are a less severe form of Spina Bifida. People with these types of Spina Bifida may have minor disabilities or no problems at all. Myelomeningocele is the most common and severe form of Spina Bifida. Most people that have this form are almost always in a wheelchair. It is also the form of SB I was born with. This occurs when the meninges of the spine and spinal nerves actually come through the opening in the spine. This form of Spina Bifida can cause the most nerve damage resulting in disabilities. Spina Bifida isn't a birth defect of the poor, the malnourished, or the underprivileged. It knows no geographical or socioeconomic boundaries. The country with the highest rate of SB occurring is Ireland. Anyone with SB has the chance to live long lives, just like anyone else. In tomorrow's blog, I will delve into how SB has affected my life in other ways, not just the physical aspects.

Now for a picture of what my back looks like with the scar from SB. 

Update on Granny.......

 I finally got news on Granny's condition. She will stay in the hospital until at least Friday or Saturday. Then she will go to a rehab facility for a maximum of 3 months to get her strength up. She must stay in rehab to get her strength up via therapy. Otherwise the hospital will not release her unless they have some sort of guarantee that there would be 2 people staying with her 24/7. I think rehab is the best option. While there, she will get therapy every day, as opposed to once or twice a week at home. Plus her insurance will pay for rehab in full for the entire 3 months. After that, her doctors and family can decide together what will be best for her. 

If The Lord's Willing & The Creek Don't Rise

This blog is specifically dedicated to my Granny. The title, "If The Lord's Willing & The Creek Don't Rise" is one phrase that as far back as I can remember, my Granny has said it. As a kid, I thought it was only HER phrase.  A "Granny-ism", if you will. It was many years before I realized that it's just a common Southern phrase. But, I can NEVER remember anyone else saying it other than her. 

I know that this entry will be a bit controversial and possibly upset people. But that is okay. This is simply MY post. To my knowledge, it does not reflect the views and/or feeling of anyone else in my family.

Granny took care of my Papa for may years. He had emphysema from years of smoking. She refused to put him in a nursing home and she spent many of their 50+ years together caring for him. After his death in 1986, in my opinion at the age of 68, she was still fairly young. But Granny nearly mourned herself to death over him. She was so depressed, she developed Shingles, an illness that is brought on by emotional stress. Luckily, with the help of her family and loved ones, she was able to snap out of her depression and get back to her old self. She started cooking again. Seriously, Granny is one of the BEST cooks the south has ever had. And she enjoyed it. She also started doing more with her church and travelling with her church group. She has had a VERY long and fulfilled life in her 95+ years! She even worked well past her 80s...retiring more than 8 times...getting bored and going back to work. And she drove successfully until she was nearly 90, deciding to quit on her own because her eyesight was so poor. 

As I have said in previous blogs, Granny is still in the hospital with really no word on her condition. Or, rather no one is telling ME her condition. All I know is that her kidneys are failing (that is nothing new. They have been in bad shape for years) and that when she leaves the hospital, she will need around the clock care. 

At nearly 96 years old, Granny has been in failing health for only a few short years now. It's been just a couple of years that she has been a recluse of some sorts---not able to leave her home that she and my Papa built together more than 60 years ago. She has had "bad" kidneys for many years. So this is nothing new. She had a massive heart attack about 8 years ago and came out of that with flying colors. There are few people that I know of that can have a heart attack and after a few weeks, their heart is "good as new for someone at that age". 

But now, for the past 3-4 years at most, she has been in undeniable pain and suffering. I do NOT want that for her. She shouldn't be suffering at all. If there is a God, I don't understand why He would allow such a God-fearing woman to be in such pain. If He can't make her better, then why won't he just take her away and end her pain? I love her so much. But I love her enough to want the pain to end. If that means that she must leave this world, I would be okay with that. Though I don't think my mom would agree. But it's just her emotions clouding her judgment. I'm sure it's different when you're talking about your own mother and letting her go. I don't know that I would be so willing to let Mama go if I was in the situation. 

Whatever happens with my Granny, I do know that I want to see her before the end...whether the end is next week, next month, next year or in 5 years. It's times like this that I wish I didn't live 12 hours away from family with little or no money to travel home with. But that is life. We all have our own lives to lead and shouldn't have to apologize for it....and I'm not apologizing.

 Really I don't know what I'm saying. There is a part of me that is torn between wanting my Granny to be healed so I can see her again to just wanting her suffering to be over. 

But that's love....and that's life.....

I'm Not Really Daddy's Little Girl

In keeping with my last blog that you can read here, I thought I would give some background information on my Dad, his absence from my life and how that affected me...and his subsequent death in 2005. 

As I said last time, my parents divorced when I was just a baby....18 months old or so. My brothers, Todd & Brian, were 7 & 4, respectively. While we lived in Yanceyville NC, dad chose to live in West Unity, Ohio with his second wife and her kids. He never made much effort to visit us. Actually he made no effort at all. My brothers would spend their summer vacations with him. But I stayed home because of all my hospital stays and surgeries due to Spina Bifida. Don't worry. I'm still gonna explain SB in a future blog. So, anyway, I never got to spend much time with Dad at all. I saw him when mom and I would go take my brothers for their visit and I would occasionally talk to him on the phone. But that's about it. We really didn't know each other at all. 

As time went on and as Todd and Brian got older, they chose, one by one, to not visit dad any longer. They didn't want to spend their summers away from their friends in NC. I can't really blame them. Most of the year, he was a stranger. Then during the summer, they were expected to go and be the happy family there. I suspect that they also wanted to stay true to our mother and not bond with Dad...though that has never been spoken and I don't think she would have wanted it that way. 

Dad was never there for us for anything really. He sent his obligatory child support, and Christmas and birthday gifts/money. I don't think he ever realized that what we wanted and needed was HIM. And he didn't realize until the end that HE needed US. Still, I still had a fantastic life without him. I honestly don't think he was missed much at all...at least not physically. Mom was mom AND dad to us and she did a damn good job of it. I don't ever remember a time that I wished he had been there or was sad because he missed a school play. I had mom for that. 

He visited us for ONE day in 1997...for a few hours, while he was on his way to a NASCAR race in Martinsville, VA...not far from us at all. Then, in 2003, his wife died of lung cancer. I suspect that it was her wish for him to reconnect with us and that's what he did. He spent a couple of weeks in NC with us...getting to know us. I cherish those moments. They were really good. He and mom buried the old hatchet too. LOL They were truly good times and it was so wonderful having a complete family...if only for a short period of time. 

My dad said he was diagnosed with prostate cancer in 2004. That may be true. But I think he knew long before that. He may have known when he came to visit us in July 2003. Maybe THAT's why he came to us. I think he knew he had it though. And I think he thought that once he got through everything with his wife, that he'd have time to see a doctor and treat himself. But that was not to be. By the time he was officially diagnosed on November 15 2004, the cancer had already spread to multiple parts of his body and he was terminally ill. I was at Lenoir Rhyne College when I found out...a few days before Fall Break. I wasn't suppose to find out until I came home for break. One of my brothers were dating a girl. And she told me one day on Yahoo Messenger. A wonderful way to learn your father is dying. I withdrew from college a few weeks later because they wouldn't allow me the time to take a day or 2 to see Dad. Some of professors had said they would fail me if I took time out of their class to visit dad for violating their attendance policy...though I had not.  

Dad was only given a year to live, at best. My brothers and I went to Ohio as often as we could. But I only saw him 2 more times before he passed away peacefully on November 16, 2005. True to my father's spirit and tenacity, he beat his doctor's expectations that he would only live a year---by living one year + one day. 

Prior to his death, during one of our visits to him, I finally got up the courage to tell him everything I needed to tell him. I left it all on the table. I knew he would not survive and I could not let him go without telling him how much I love and adore him and forgave him for being an absent Dad. I had an amazing life despite that fact. And I didnt want him leaving this Earth with any regrets or feeling like he wasn't forgiven. That's probably the most important thing I think I have done in my life so far. 

The times I shared with Dad between 2003-2005 were few and far between. But I learned so much about him and myself during that time. It made all of those years without him just disappear and now I can look back on my life and I DO have fond memories with my Dad. Those few moments mean more to me than a lifetime of memories could have. I think that happens a lot in life. When you KNOW what the outcome is going to be, you cram as much time and memories as possible in that length of time. It's not the length of time you have. It's what you do with it. 

*****In my last blog entry, I spoke of my Grandmother being in the hospital. As of the posting of this blog, there is no news to give out. I will keep you updated. ;-)

In The Beginning...

So, I have been saying for the longest time that I would start a blog because I have "a million" things to share with the blogosphere world. Suddenly, now that I'm doing it, I don't know what to say. I suppose tonight (or this morning, since it's 1am), I am just trying to occupy my time and not worry so much. You see, my 95 year old grandmother is in the hospital tonight in Virginia and I am damn near 12 hours away in Florida with no money to travel back home to be with my family. I'll keep you posted on how she is doing. :-) Just my luck. But I DID title this, "In The Beginning", so I should probably start there and see where this journey of blogging takes us. :-)

My name is Dawn and I am 38 years old...or I will be in just over a month. My birthday is September 17. I was born in Martinsville, VA....yep, the one famous for NASCAR racing. Oddly enough, I hate NASCAR. I was born with a disability called Spina Bifida and I'm paralyzed from my knees down. I will discuss SB and how it affects me in a separate blog in the future. Actually, get use to hearing about it. I will probably be blogging about it a lot---at least in the first few blogs. Anyway, we moved to Caswell County NC when I was 3. Here, I spent the bulk of my life in Yanceyville. It's a quiet, Podunk little town with absolutely nothing to do whatsoever. Looking back on growing up there, I love the life I led then. It was so worry free.....kind of like a fun country song. I lived there until 2010. 

Growing up in NC, it was just my mom--Pat; my older brothers---Todd and Brian; and me. My parents divorced when I was about 18 months old. Dad lived in Ohio and we saw and spoke to him occasionally. I will blog about him another time. As a family of 4 in a single parent household, I'm sure we struggled a bit financially. But I never knew it. Life was so simple then. And my family seemed to be doing well to me. Looking back, I still think we did. Maybe we didn't have the best of everything. But we had what we wanted, what we needed. And we had a mother that would move the heavens and Earth for us. So, we had it all. 

I'm glad I titled this Ramblings of a Tarheel Girl. As you can tell, I ramble...a lot. And I am 110% a Tarheel Girl. Now that I have gotten the first blog out of the way, I think the others will be easier. And they will be coming soon. Good night, Blogger world!