Tuesday, December 27, 2011

Family is not always Blood Related

Dear Friends, I hope that you all had a great Christmas! I hope that you got alot of nice things from Santa. :) Also hope you enjoyed your family and friends. I know most of my post have been on the negative side of things but I'm just trying to sort all my thoughts out. The following post is a post I started to write Christmas Eve while attending my dads side of the family Christmas. I love my family don't get me wrong but sometimes.....

Family..... What makes someone family? Is it the same blood that run through your veins as theirs? Is it the people that say I have to love you but I do not have like you? Is it the people that say something that makes you happy or is it the people that tell you the truth? Is it a person that keeps secrets then goes tens minutes later gossips about them to someone else in the family and it goes around the whole family?

Family is a great thing that one can have. Some of them are so supportive and great to lean on. But as a girl with a disability (the only one (not sure if there is another one to date) with Spina Bifida anywhere close to) it is hard to connect with people even family that sometimes judges you about your disability. As a young girl it was hard to not feel out of place. I felt like some of the family didn't want anything to do with me till they needed something. I know they probably didn't know how to include me in alot of things but it get frustrating because I was unsure how to include myself. Some times I felt out of place and sometimes still do.  

I realized that it happens to the "baby" of the family alot in some non-disabled families but as I am hearing from messages and comments, its happening to alot of kids with disabilities that have siblings. They walk in the shadows of their non disabled siblings. Most of us that do are very unsure of ourselves and unsure of how to per say get out that "shadow". You get comfortable and live your life like that.. I never new any better I guess.

From experience I grew up with two very athletic and were very good at school brothers. They were praised by my family so many times I lost count. They are still the talk of town. I would go to most of the sports events (as I got older I would stay home because I didn't want to go for many reasons). I just went with the flow like I do most days. As I grew older the jealousy set in but as time went on it began to grow big time in me. They would bring home trophy after trophy and I would imagine me getting one but never believe I would ever get one. My parents would push me to do stuff but I felt like a loser. I hated being the one that went to the bathroom different, walked different, and had to do all the things that comes with a disability.

I did do Girl Scouts but as the years when on my troop dissolved. So many people in my family did Scouts, my grandma Rita was a leader, my mom got her gold star (I think that is what it is called), I wanted to be just like that but it began to be more of paperwork then actually doing something fun. I liked Girl Scouts don't get me wrong but I did have thoughts about not belonging. They were girls that were my friends and I appreciate their friendship but there was always that fear in my head "do they only like me because they feel sorry for me" I know that was rarely the case. One of my Best Friends I found while in Girl Scouts. We did so many things together. We even got a first job together at my mom's ice cream shop.

It was only recently I discovered that your family is your family but you cannot surround your with people that are negative even if some of that negativity is someone in your family :) A person cannot live like that. You have to surround yourself with the ones that love you for you and accept you just the way you are or trying to get to. Family can come in so many forms and sometimes it comes in a form you have to look really hard and it could be someone that you wouldn't think would become family. I know for me that I didn't realize that there were "family" out there that would listen and care enough not to judge but to help. I found these people on this journey of self worth. Most of these people are not blood related but I consider them my family. They help me with whatever I need whether is a story to make me laugh, a hug, a lunch date, comments on face book, cards in the mail, encouragement, phone calls, and the best of all showing they care. These people are the greatest in the world. They know who they are and know that without them there I would be where I am today!

I'm a kind of person that cannot stand a judgemental family/friends and people that need to know something just to judge you. I realize that alot

So it boils down to this... Family doesn't have to be blood related at all. Find People who love you for you not your actions, people who you can lean on, and people that believe in you. Judging people before you know the situation is not good.

Thank you for reading and Let me know what you think of this blog and others if you would like :) I love to get feedback and know that what I write people actually want to read :) Merry Christmas!! Love you! TTFN,

Friday, December 16, 2011

Dreams are my driving force

Hey everyone, I hope everyone is having a great day and getting all set for Christmas. I am getting excited to see my Brothers and sister in law and the rest of the family.. I hope that all make it home.

A few days ago I was talking to a friend of mine and she asked me a question that alot of people have asked me this year. What does Jen want in life? To be honest I tell everyone I really dont know because there are so many answers to this question and so many different aspects of this too. The answer to that question has changed through out my whole life and probably is like that for alot of people.

When I was a little girl my favorite movie was Walt Disney's The Little Mermaid. I watched it ten times a day and dressed up as Ariel one year for Halloween. I would dream of swimming as a mermaid in the ocean and be friends with sea animals (except sharks ofcourse). It made me feel like I could be different and it was ok.  It made me believe that i can do what my heart tells me to do.

As I got older that dream was still there but there were new dreams. Some major dreams of mine were (some still are my dreams today) to belong, to have people who understand, and the find me. Living with a disablity, you dream of being normal and being accepted for being you.

 I loved to listen to music. I loved to pretend I was a singer in front of an audience (usually my stuff animals in my room). I would try to sing in the car but usually that bugged someone so I kept quiet as much as I could. Yes, Im one that sings in the shower if I have music playing. There is just something about music that makes life so much more enjoyable. It was my outlet to most of my emotions.  

I realize now that I forgot how to dream when the tradegies in my life happened to me. I began believing that dreams are just for sleeping. I had to keep my dreams in my head because if I didnt I thought that somehow they would be taken from me. So i honestly can say I didnt dream of anything. Just went day by day and lived life. I bottled alot inside and never told anyone nothing important.  

When I began idolizing Reba (The reason why is in the earlier post called "WHY REBA?") the dreams began again.  I was so interested and amazed by how she was a small town girl and then became a superstar. I began to sink myself in her job ethic and how she does all the things she does but with grace. I admire her generosity too.  She doesnt let the stardom go to her head. I dreamed of meeting her even for like a min. I knew it was a long shot for sure but I had a dream once more.

On July 22, 2004 to my surpise that dream came true. My mom (who I love dearly and am so grateful for even if I dont know how to show it most of the time) emailed the radio station 94.5 the moose. Keith Allen (who is one of the nicest and most sweetest people Ive met) somehow got my mom backstage passes. I am forever grateful to both of them! That 3-4 mins standing there with Reba will be forever cased in my memory forever. I was so starstuck I couldnt speak. I have attended every concert that she has had in Michigan since then. Yes that is a total of 11 times since 2004. Everytime she amazes me. I dream/wish/pray to actually get to speak with her one day and tell her how she saves my life.  

I may not know what I want to do with my life but I know now that I cant stop dreaming. Yes, most of my dreams have to do with Reba but their mine. No one can tell me theyre dumb or what they ask arent you asking for some really out of reach things arent you?  I think that we live in a society that we rush and rush but dont actually take the time to dream and take in consideration of what a dream is. We go day to day trying to make money and get more and more. I like to think we need to stop realize what we have and what some people say "the climb".

Dreams are what makes the world go around. Without them where would be go. So it comes down to this "Don't ever let someone tell you that you cant do something even if you are disabled or not. Your dreams are your own. You never know when that special moment will come. Dreams come true, you just have to believe!" I will never stop believing in my dreams. Someday I will tell my hero, Reba Nell McEntire, in person what she means to me, I will find me, and find where I belong but as of right now I will be wishing on every star and never lose my dreams!  

Thank you for reading. Please comment if you wish! I appreicate all the support for this blog! Love you all! TTFN

Saturday, December 10, 2011


Hi Everyone,

I hope everyone is having a great night and getting excited for christmas! Ive been good. Ive been trying to keep myself busy with craft, hanging with my puppies, and other things.

So I am hearing that there are alot of people that want to know the REAL story behind me idolizing Country superstar Reba McEntire. So here it goes........

I really didnt know who Reba was at first. I have loved Country Music since I can remember but I was into people like George Strait, Tim McGraw, Faith Hill, and others. I knew of some of Reba's songs when I heard them but never knew her name.

There is a song that I listen to when I get sad, feet lonely, or feel out of place. I listen to it and it is like she is telling me that she will always be there when I need her. The song is called "I'll Be". I never knew who sang it till after my grandma died but when I listen to it, I would pretend Reba was singing it to me and I would feel like she was wiping my tears away and telling me it would be ok. I would play it in the hosiptal when I would have surgery for my shunt. It would make the pain go away. It was a song that when I heard it everything seem to be right.  

The year was 2000. My grandma Rita just passed away from cancer. I sank, I mean DEEP sank. I didnt want to be near anyone anymore. I believed that if I got near someone or told them of the way I felt they would be taken from me. I never thought that I would find the light at the end of the tunnel. I was going through my mom cds one day and came across the cd called Reba McEntire's "For My Broken Heart". I listen to it and instantly the raw emotion and something about her voice gave me hope and strength. It was almost like sign.

As the years past there were times I got really depressed and lonely. I did think about hurting myself. It was when someone would laugh at me, I would have an accident at school or home, or just a agruement with my parents. I would get frustrated enough at myself and the world and just wanted to let it all go. Most times it was the thoughts of who cares, why did God make me this way?, no one wants me, or I want to see Grandma again that would run through my head. I never actually got to the point of phyiscally hurting myself. There was always something that made me stop.. Some of the time I would get ready to just end it all and her song would come on the radio or I would get a glimpse of Reba's picture on my wall and it was like she was telling me to hold on once more. I would stop and then cry myself to sleep. This is going to sound kinda weird but when I would get frustrated enough and needed to talk I would sit in my room and talk to her picture. She became my best friend that would never leave me. I thought maybe somehow she was listening. It gave me alittle comfort thinking that way.  

Over the years and more incidents like that would make my respect and love for Reba grow. She became my hero because her determination, kindness, and ambition. She brings so much emotion in her songs, you feel like she is singing your life story. I bought all of her cds, videoes, and other items. I thought the more things I had of hers the safer I would get.   

Alot of people ask me how you can love someone so much and you've only met her for about 3 mins. Well she is the one person i credit with saving my life. Depression is a hard thing to deal with day to day. Ive also hear alot of people ask me "Why not talk to your parents or tell someone you know?". Well my parents arent the easiest to talk to about things. There wasnt alot out there for parents about Spina Bifida back when I was a kid. So they were honestly I think not sure of how to deal with me. They also had two other kids to raise. Yes, I sometimes felt like the kid that didnt belong. Its not easy telling your parents that your hurting or anyone for a matter of fact. So I turn to a woman that may never know or remember I exist but she continues to show me so many things daily but most importantly that I have to believe to hold on and dream. Reba is everything I wish I could be and more.  
I wish, pray and hope one day to be able to tell her how she has helped me.

Thank you for reading and share if you would like. Have a great night everyone!  If you would like to ask questions or leave comments you can if you wish! TTFN

Friday, December 2, 2011

What is Spina Bifida?

Hi everyone, 

This post I should have posted along time ago but for some reason I wasn't sure on how to write it.. Many of you know I was born with Spina Bifida with hydrocephalus. I wanted to touch base with exactly want that means. Here is some information I got off of wikapedia.com:

"Spina bifida (Latin:"split spine") is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

Spina bifida malformations fall into three categories: spina bifida occulta, spina bifida cystica (myelomeningocele), and meningocele. The most common location of the malformations is the lumbar and sacral areas. Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. The terms spina bifida and myelomeningocele are usually used interchangeably."

OK, Big words I know but basically it means when I was developing in my mom part of my spine was exposed and got damaged. I have Spina Bifida cystica (Myelomeningcele) L4. I have spotty feeling from my knees down and no feeling in my feet, I cant move my feet at all. That is why I wear leg braces to help my balance otherwise I'm so wobbly its not really funny.. I have no control with the bladder or bowel so I have to self cath and have to be on a bowel program. This is the hardest part of this whole thing for me anyhow.  I also have hydrocephalus which means fluid on the brain so when I had my first surgery a few hours old to put in a shunt which is a tube like drain that extends from my head to my stomach. I have had surgeries to unclog this or replace it. I have to watch if I get a bad headache or a few other symptoms I have to get it checked.

What people don't know is with a disability comes alot of challenges. The bathroom situation can be the hardest but also the little things also can be the hardest thing. To see other kids jump rope and in your heart you want to try but don't want to be the laughing stock of the playground or to have disappear from class to use the bathroom can be hard to one self esteem. I live in such a small town that no one knew what Spina Bifida was or what to think of it.  For years I was always the girl pick last for everything whether it was gym class (which I hated the most) or to be partners for anything. I grow accustom to being the odd ball out. It wasn't till I attended a youth rally that I learned that there are people like me. I met two girls from Hawaii that have Spina Bifida and going through some of the things I have been going through. They have become two of my best friends even though they live so far away.  I also have a friend that goes to the same church camp I attend that has spina bifida too so she and i can relate to alot of things.

Well if you have any questions, I am here to ask whatever you may need. I use to be embarrassed to answer questions about my disability. I actually thought when  I was little that it would go away if I didn't think or talk about it. Now I know I was dead wrong about that. It never going away I just gonna work on living with it.

Thank you for reading this! I appreciate it so much! Love you all!! TTFN

Seasons Change

Hi Everyone, 
I hope whomever is reading this is having a great holiday season. The past few days have been up and down. Its like some days are spinning 90 degrees and other I can actually see my world. I guess that is life though. Many people tell me that I need to leave the past in the past but honestly Ive thought about it if I cant dealt with what has happened to me how can I grow out of my shell. This is one thing Im not sure what I can do to help my self leave it in the past and let some of it eat me or deal with it.

I was sitting here trying to figure out what to blog about many things come back to me about how much during Christmas time so much has changed. I can remember my brother Jesse waking me up on Christmas morning and we would race upstairs to the tree to see what Santa Claus and it would be the best day ever. We would play together as a family with the new game we got. Alot of the time Jesse and my dad would make breakfast. Christmas is my mom's bday too.  As we grew older and learn somethings, Christmas took on like a not so much togetherness feeling. We would open gifts and go our separate ways. My brother Joe didnt come home last year for Christmas morning and I slept at my own apartment last year. It just hasnt been joyful as years I can remember. I know Christmas is suppose to be about being with family and friends but to be one the has felt out of place most of her life, you treasure the moments you feel like a part of something.

I know this year I treasure so much more than I did in years past. I have open my eyes to that I have so many people espeically friends that love me. Im lucky to have them to help me through this struggle with finding me.
I hope that you and your family have a great holiday season! I know that I will be thinking of every person that is special to me! Thank you for reading! Comment if you wish! Love you all! TTFN