Thought of the Day

When white people post on social media the videos of black people that support Donald Trump and/or hate Barack Obama…They’re still an idiot. You’re still a racist, homophobic, misogynistic, xenophobe.

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Why Must We Lump The Bad With The Good?

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What? 2 blogs in ONE day?!!! How did you guys get so lucky?! I have had a lot on my mind lately and I haven’t taken the time to blog about it. Now I wanna discuss some of the things that have been focused on by the media and how we believe it.

Lately, there has been numerous discussions about white cops killing young, black men. I know it seems like it’s happening so much these days. But it really isn’t. Because of the media and social networks, we are just hearing about it more. Racial profiling and racism have always existed. They always will. But for us to buy into the concept that ALL cops are “black killers” or ALL blacks are thugs is quite ridiculous. Let’s take it further. All Muslims want to kill Americans. Mexicans and Immigrants are taking over America! The disabled are just lazy people that don’t want to work! Christians are just Bible-thumpers that want to take away all of your civil rights! The gays are promiscuous whores!! Transgender people are just going through a phase to piss off their family! Really?! How foolish does this sound? STOP BELIEVING IT! There ARE good and bad people in every walk of like. Blacks, whites, cops, muslims, Mexicans, Christians, LGBT, the disabled. There is not one group of people that does not have at least one bad apple in the bunch. But because we hear about that Bad apple over and over again, it gets put in our heads that ALL apples are bad. It’s just not true. 

Maybe racism actually could end if we stop believing the hype thrown at us by the media every single damn day!!

American Sniper 2015 Film

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I have heard far too much about the movie American Sniper for far too long without commenting on it myself. I saw the movie starring Bradley Cooper and Sienna Miller last weekend. I probably would have blogged sooner, but the movie literally left me speechless. After watching it, the entire theater just sat there…literally for a few minutes just taking it all in. I imagine they all had tears in their eyes just as my husband and I did. That night as I tried to sleep, I found myself waking up every hour or so just thinking about Chris, His wife Taya, and their 2 children. Their sacrifices….How Taya and their children are coping now without Chris. 

The film has grossed more than $180 million worldwide, with more than $120 million of that being made in America. Yet, the film(and Chris) is getting a lot of negative reviews from a few celebrities, including Michael Moore, Seth Rogen and Bill Maher. They’re calling him (Chris Kyle) a coward and a psychopath. Why? Because he was a sniper? Because he had a 160 confirmed kills? Guess what? That’s what he was trained to do. He had a job…and he did it, very well. Is it odd that he loved his job? Maybe. Maybe not. I see it this way…He loved protecting his country. As an American, that’s kinda what we want in our soldiers. Yes, he called The Iraqis savages. The Iraqis that he fought…the Iraqis that killed his brothers in arms WERE savages. He was trained a certain way and he followed through with that. Why is he getting so much flack for it…especially now that he is dead. He had a job. He did it. Point blank. The end. The movie (and his book that the movie is based on) does not glorify war. It tells his life story. His closeness with his troops and family. His struggle with PTSD and how he ultimately overcame by helping other soldiers. He was not a savage or a coward. Anyone that believes he was should enlist in the military and see just how cowardly and savage it is. It is a kill or be killed situation. He is, was, and always will be a hero. 

Reflections of 2014

So….I know I  have not written as much in this past year as I thought I would when I created this blog. And the truth is that I’m not sure why I have not. Many things have happened to me that inspired me to write. Yet, I just could not do it. Frozen by what others would think or say about what I have written about that’s going on in my life. If you know me personally, you know that I usually don’t care what others think of me. And maybe it’s a bit deeper than that. Maybe if I actually write those occurrences out, they become too real and I wouldn’t be able to ignore them.  

The fact of the matter is that my year did  not begin on January 1, 2014 like yours did. My year began December 17, 2013….That’s the date my grandmother died. It pretty much set the tone for my entire 2014. From that date on my life has changed drastically and continues to change. Sure, I have had some wonderful things happen to me. Just this month I got married to the love of my life and I have never been happier. But even with that comes a bit of sadness brought on by things I’ve had to endure this year. 

I actually have another blog site and I don’t share as much there as I do here because it’s not private like this one. All of my real life friends and family read it and know who I am. That’s the beauty of this one. No one close to me knows it’s existence and if they do, they don’t know its me writing this. I love being anonymous. I can write whatever I want here!!! That’s why I created this site. Yet, saying the words that I have longed to say just have not come out in the past few months. Let’s fix that.

I grew up believing that my father was a man of Native American descent. I’ve written about him a few times here. How he wasn’t really in my and my brother’s lives much and how he died of cancer almost a decade ago. How much I love him and miss him so very much. All of this is true. Mostly.

You see, on February 7, 2014 at 1:30 in the afternoon I was on the phone with my mother when I got a notification from a stranger on instagram. Mom and I discussed it a bit. But I largely dismissed it. Mom and I got off the phone and I went back to the message because it almost haunted me. It read, “Please contact me via Instagram or email(which was included). I think we are related. Please. It would mean a lot. I don’t want to be worrisome.” I wanted to ignore it. You can not trust strangers on the internet and I know that. Still I could NOT ignore the message. I emailed this woman and from what I could tell she was trying to say, I knew I didn’t want to continue via email. I asked for her number and called her. She put a man on the phone…her father. He was also beating around the bush and I grew tired of it. I knew what he was trying to say. Finally, I asked “Are you trying to say that you are my biological father?” I thought I was prepared for whatever he had to say in response. I wasn’t because he said yes. Of course, I refuted this. But deep down inside I knew this strange man was telling me the truth. I’ve always known I don’t look like anyone in my family. Definitely not like my brothers and my Dad. They were carbon copies of one another. Yet, I told this man he was wrong because I had alread taken a DNA test in the past and my Daddy IS my Daddy. I lied. I have done no such thing. We hung up and I was so confused and upset. I called Mom back, and long story short, she confirmed it. 4 decades have passed since my birth and some of the most important things I thought I knew about my life were not true. My Daddy (he’ll always be my Daddy), doesn’t share my DNA. My brothers only share some (a lot less than I had previously thought) of my DNA. I’m not “mixed” with native American blood and Caucasian blood. I am biracial though. I’m mixed with African American blood and Caucasian blood. I have 2 sisters I didn’t know about. I no longer trust my mother to be 100% honest with me.

I took most of 2014 to adjust to the newness of the situation. I’ve learned about my new family. I love my youngest sister unconditionally. The older one remains distant and that’s OK. In time maybe she’ll be more open to me. If not, that’s OK too. I also learned that I don’t much care for my biological father. He seems to have a grudge against white folks. And since that’s half of me, I am quite offended by some of his comments. However, my sister contacted me on August 30 to inform me that he went into cardiac arrest and died a couple of hours beforehand. I was not affected the way you may think. Yes, he was my biological father. But I had only known him for 6 months. And quite frankly, I didn’t like the man I knew. So, I’m at peace. I’m hoping to help my sister through all of this. 4 days before she found me her mother passed away. Many people go through life wondering why certain things happen. I don’t. Things really do happen for a reason. It’s just a matter of time before those reasons show themselves. I know God set things in motion from 2013 (probably before that)on so that I’d meet my biological father before he died. I know I am here to help my new sister as she copes with the loss of both of her parents in less than 6 months.

As I reflect on 2014, I realize I had more blessings than heartaches. It’s all a matter of perspective and I choose to view it with a positive attitude. As I look to 2015, I proceed with caution and a bit of trepidation. I’m excited to see what the future holds. But I’d be lying if I said I’d be OK with another bomb dropped on my life like this last one.

So, here’s to 2014 and to 2015. May the transition from one to the other be an easy one! Happy New Year!

Spina Bifida Awareness Month Ends Today, But Not Spina Bifida

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October is Spina Bifida (aka, SB) awareness month. I had high hopes for advocating and creating awareness for it this month, after all, it’s the disability I was born with. I started off the month strong, posting blogs and posting on all the different forms of social media. I even had celebs to retweet my blog! Then halfway through the month, I travelled to my hometown and was pretty busy for more than 2 weeks…then I came down with a horrendous sinus cold that I still have. All of that hindered me a great deal from spreading awareness. That saddens me. Because SB is still overshadowed by other disabilities and more well known afflictions. Yet, Spina Bifida occurs more frequently than Muscular Dystrophy, Multiple Sclerosis and Cystic Fibrosis….more than all three of those—-COMBINED.

 
So, while my educating for a worthy cause dear to my heart stopped, the SB didn’t. I still have it. It didn’t go away. It never will. I will have SB and be in a wheelchair for the rest of my life. And, quite frankly, Im okay with that. I don’t suffer from SB. It suffers from me. 
 
But just for shits and giggles, let’s discuss what SB is and how it affects me. The short answer is that it doesn’t really affect me at all. Anyone that knows me, knows that I am one badass chick. But, I digress. Here’s my SB story:
I am 39 years old and was born with myelomeningocele ( thats pronounced as Milo, my ninja seal) at the L1, L2 region of my spine. This means that the Spina Bifida lesion on my spine is in the lumbar region at the 1st and 2nd vertebrae. 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 in 1991 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 actually, my wheelchair gives me a certain level of speed and  independence that braces never did.

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 a Ventriculoperitoneal Shunt(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 and a few latex related foods.

I went to school just like everyone else and had someone assist me in getting to my classes and with carrying 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 common with SB. In fact, I was an A & B honor roll student with the occasional C in math, which actually COULD be contributed with some of the SB comprehension issues. 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, of which I will not go into detail. 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 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.

So, now that you know more about Spina Bifida and ME, does it change how you see me or feel about me? Do you have questions concerning something that I didn’t cover here regarding SB, disabilities or life in a wheelchair?

Now for that picture of what my back looks like today. I almost decided not to post it, but I really think it’s important for you to know what we’re talking about here. 

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My Son as Reese Witherspoon as Elle Woods

Raising My Rainbow

“What are you going to be for Halloween?” one of my son’s male classmates asked him today.

I waited nervously to see what C.J. would say.

“A lawyer,” he replied.

I smiled. My son was spinning the truth. I’m in PR, I know good spin when I see it.

photo 1-7Yes, in very general terms my son will be trick-or-treating as a lawyer for Halloween. More specifically, he will be dressed as Reese Witherspoon’s lawyer character Elle Woods from the movie Legally Blonde.

There are three very important reasons why C.J. selected this costume:

3. He likes the movie.

2. He likes to wear long blonde wigs.

1. The costume came with a pink purse with a tiny plush Chihuahua inside. (This is the main reason.)

C.J. took several liberties with the Elle Woods costume we bought at the costume store. (BTW, the costume was 75 percent off because not many…

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Why I Don’t Hate Spina Bifida

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I belong to a few online Spina Bifida communities. These are online forums that allow individuals with SB and their immediate family members to have emotional support, camaraderie, and get advice on the issues they may be dealing with. These are wonderful groups and I have met a lot of great people and learned a ton of things that even I did not know about Spina Bifida. 

But one thing that seems to be common in all of these groups is that the members all have days that they exclaim, “I hate SB!” or “I’m having an I hate SB day!” As much as I have grown to love and respect these people, I just can’t relate to that. A lot of the people that say that are the parents of young children with Spina Bifida. I totally understand that. No parent wants to watch their child suffer through surgery after surgery. I’d be willing to bet my own mother hated Spina Bifida, too. I’ll have to ask her. 🙂

I know we all have bad days and need to vent. But on my worst day, I do not hate my disability. When I’m suffering with fecal incontinence, which SB can cause, I hate THAT. But not the SB. I hate that I sometimes get urinary tract infections because I have to catheterize, and that’s a result of the SB. And I damn sure hated when I suffered with a pressure sore on my right heel for almost 8 years. But I still don’t and have never hated SB or having SB. 

Spina Bifida isn’t who I am. But it IS a part of who I am. It has helped shape me and mold me into the woman that I am. I, of course, don’t know for sure, but I doubt very seriously that I would be the same person if I did not have SB. I think because of SB, I am more understanding to differing minority groups. You can’t truly understand what it’s like to be a member of a minority group and what they go through, unless you, yourself also goes through them. Sure, you can have empathy for someone. But you can’t truly understand unless you’ve dealt with similar situations, no matter how hard you try. 

Because of Spina Bifida, I have even had the chance to go up in a hot air balloon. Years ago, one came to my area and it was specifically FOR people with disabilities! I have always had a fascination with hot air balloons and I had never seen one up close and in person before or since then. So Spina Bifida definitely gave me that chance. 

I don’t know. I definitely think that SB is a GOOD thing for me. I have many experiences because of it. I work hard because of SB. I’m more independent because of SB. I don’t give up easily because of SB. I feel like if I didn’t work hard, or wasn’t independent and gave up easily, people would expect that because society has a skewed image of disabilities and doesn’t expect much from us. So, Im out there doing what I can to prove all of you wrong. 

All of that is not to say that I have had it easy because of SB. I’m not skating by just having an easy life. I have had pretty bad experiences with SB. 50+ operations, painful UTI’s, pressure sores, MRSA, osteomyelitis. I’m an extremely lucky woman. I know that. I am blessed to be alive. I’m not blasé about it. I KNOW I’m lucky.

I just don’t hate Spina Bifida. I feel like if we hate anything at all, we should hate the things about ourselves that we can change. Like, I DO hate that I’m overweight. I can change that though. Yes, it’s hard as shit to change. But it can be done. I hate having naturally curly thick hair that prematurely greys. I can change that…and I do….every chance I get to go to the salon. I don’t want to hate SB. I can’t change it. So, why bother? I feel it would almost be an unhealthy obsessive thing to do. And since it’s such a big part of who I am, I feel like I’d be saying I hate myself. And I damn sure don’t hate me!! I love me some Shirley Donkey. I’m not conceited. But I am confident in who am and what I can do. 

Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

This is, yet, another beautifully written blog on Spina Bifida. Enjoy.

wifeytini

October means it’s Spina Bifida awareness month, so that means everyone and their mom is up in arms about prevention. If you follow any Spina Bifida-affiliated organization, then you’re totally gonna get an earful this month about folic acid and how SB is totes preventable if you JUST TAKE FOLIC ACID FOR THE LOVE OF CHRIST. (Sara from Ernie Bufflo does an excellent job of explaining why that isn’t always the case, and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on this blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who Henry is, and no amount of folic acid is going to change that. It’s not really something I talk about…

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Spina Bifida 101

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This blog is very important to me, especially given it’s timing. Spina Bifida Awareness Month is October. Here’s my story:

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, in 1991, 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…

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Love, Sex, Relationships and Spina Bifida—My Experience

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Don’t worry. I’m not going to get all graphic here. 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 3 years. 

Up until I met him, I never dated. I had plenty of friends and crushes. But no one would ever ask me out. And I was NOT about to ask someone out and be rejected. 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 someone that has a wheelchair. Maybe not special, but someone certainly willing to look past the 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 good 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 couples 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. 

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.