Madi talks to Siri... This is What Spina Bifida Looks Like

Most of the time, this is what spina bifida looks like for us... enough said!

 

Spina Bifida and Quality of Life

Quality of life. 

That's something we, as humans, often feel the need to judge. 

When a baby is diagnosed in-utero, parents are too often told they will grow to have no quality of life.  Some parents are even told their child will be a vegetable.  Then comes the fact that their child *may* use a wheelchair, which of course, they make sound like the end of the world.  Oh, and let's not forget that you are told your marriage will likely end in divorce if you take on raising a child with special needs.  You are given a doom-and-gloom speech, then you are offered your "options".  

It's hard to hear the doctor speak these words.  Most of the time I hear new parents express that they are scared.  I read their posts, I reply to their e-mails, and I get it.  The truth is, when I found out Madi would be born with spina bifida, I was scared too.  If I knew then what I know now, I would have saved myself a lot of stress and tears, but I can't go back and change the past.  What I can do, though, is try to reach those parents feeling scared and reassure them that it will all be ok; that their child will be ok.

When I look at my girls I see light.  I see laughter and love.  I see pure joy.  They aren't faking their happiness, or trying to be something they aren't.  They aren't sad, they don't pitty themselves, and they don't let anything stand in their way.  They are smart, talented, creative, hard-working, funny, silly, loving, and the list goes on and on.  Spina bifida is part of them, but it doesn't define them. 

I started to wonder, though, how adults with spina bifida feel; how my girls will feel.  Do adults with spina bifida feel like they have a good quality of life, or do they feel that those doctors are right? Instead of making assumptions, I decided the best way to find out was to ask.  These are the responses I got.  They are unedited and were not filtered in any way.

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My name is Chris, I'm 47 and was born with Spina Bifida Myelomeningocele, L4-L5. My parents were told that I would not have a very good quality of life, and I proved them wrong every chance I got. I went to mainstreamed Elementary, Middle and High Schools, and graduated from each. I played on a youth soccer team with non-disabled people and our team won the championship. I then got a degree in Computer Science from a local college. And I also managed to break a Guinness World Record along the way. I've worked at a few jobs, I drive, I have a social life, and enjoy doing many different things. I would say that my quality of life is just fine.  

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 Amanda~ I'm not one to let life live me.

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I am Heather, 28 from Rochester MN. I was born with L4-L5 Myelomeningocele Spina Bifida and Hydrocephalus. I walk mostly, with a brace for support of my left ankle. I use a wheelchair, for long distances. I have had around 10 Spina Bifida related surgeries, plus a few extras for other things.

From elementary school, to high school, I was in regular PE and I was even on the swim team, in Middle School. I had Physical therapy, mostly in my childhood. I started adaptive PE in high school. I got my license and drove, just like anyone else did. I had my first job, at Burger King, at 15. Having other various jobs after that, including always babysitting on the side. I had boyfriends, most whom were able bodied. It seemed the disabled boys, were the ones who didn't work out the most! I went to college for Child Development. When I was 19, I found my now husband online, even though I wasn't even looking for a boyfriend at the time! I moved from Minnesota to Illinois, to live with him. From there, I ended up being a nanny and working for a local company, working door at concerts, on the weekends. We were married in 2006. In 2007, our daughter was born. She died at 4 months. We then had a son, in 2009. We moved back to Minnesota in 2012 and since then, I have been a stay at home mom, with photography on the side, for a job.

I guess what I am trying to say is, being disabled, doesn't have to stop you from living a normal life. Just because your body doesn't work like everyone elses, doesn't mean there's not a way to get things done! I think, your mind is the only thing that can hold you back.



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Misty-    My parents were told, like a lot of other brand new SB parents, that I would have no quality of life. They were told I'd never walk, talk, feed myself...I believe the term "vegetable" was used. I find it strange how much I don't actually feel like a potato. My feet don't work. I can't walk long distances. It's never been that big a deal to me. I've never had the use of my feet, and I don't know what I'd do with them if I did. I don't understand why having floppy feet automatically equates to a poor quality of life. If someone needs glasses, we don't have a pity party and cry about how awful it must be to need extra equipment to see, and we certainly don't come to the conclusion that their life must be SO AWFUL that we should "let them go" to end their suffering. I wear leg braces. They help me to have that "quality of life" thing I'm not supposed to have. It's not a big deal. I slap them on when I put my shoes on, the same as you do with your socks. I don't think the 45 seconds it takes to do that really dips into my quality of life. Who decides what "quality of life" is anyway? Quality of life is a choice. I could sit around all day and mope about the fact that I'll never be an NFL running back, or I can praise God for the things I can do! I choose the second one. God has been good to me. I don't have a reason to lay around feeling sorry for myself. I have a good husband, a good family, friends who will wait that extra 45 seconds so I can put my braces on. I get to tell other people what my quality of life will look like. No one gets to decide that for me. I choose to rejoice in what I have.

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Susan- When a person looks at the world, they are doing so through their own unique experience (perhaps one reason those without SB view us as having a poor quality of life.). As such, since I have never known what it is like NOT to have Spina Bifida, I don't have anything to compare it to. Comparisons though, in my opinion, are dangerous. Comparisons validate these stereotypes and pre-conceived notions and can lead to self-fulfilling prophecy if we're not careful. Yes, I have had more medical issues than someone without SB. I've had many surgeries. However, these moments have made me stronger, both physically and emotionally. I have defined my quality of life - not by the difficult times, not by what I don't have, not by what I can't do - but by the blessings I have been given.... blessings of family, friends, a job, talents and the ABILITY to make a REAL contribution and difference for others. These are the aspects of life that bring me joy and purpose. There is so much for us to learn from each other and we all deserve that opportunity to decide for ourselves what our definition is of "quality of life".

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 Kristen-  Kristen did a research paper on spina bifida in highschool.  Though she has spina bifida, she found what she read quite terrifying and saddening.  She now works towards helping others view spina bifida in a more accurate and positive light, and empowers others to live independently.  She has a youtube channel she keeps updated with videos where she shows how she lives and thrives independently.  She hopes it will be a resource for other parents that don't know where to get their kids help and also for other adults with disabilities.   Her youtube channel is....

https://www.youtube.com/user/KristenMarieHart/featured?view_as=public

Kristen says....

 Despite the fact of being a fulltime wheelchair user I have still managed to live on my own, drive and recently graduated from cosmetology school! And that I make those videos to help and encourage others in chairs and their parents so they can teach their children.

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David- David does not have spina bifida, but also experiences judgement on his quality of life as he lives with Duchenne muscular distrophy.  He shares....

Nobody can make that decision for me, but me. I may be fully ventilator dependent, have a trach, depend on a food tube for nutrition, function like a quad and require 24hr supervision, but I absolutely love my life. I'm the smartest person in the family, can tell you how to fix or build almost anything. I've loved & have been loved by the best girl ever (my SB angel) and lost just as much. I'm a very passionate person, I advocate for Duchenne and SB communities where I can.

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Nicole-   Thirty-five years ago, I was born to a young couple who had no idea their baby was less than perfect. It wasn't until after I had come into the world that my parents were informed by doctors that their new baby girl had something called spina bifida. I was immediately rushed to another area hospital that could handle my immediate needs, which required multiple surgeries. Later, doctors informed my parents that because of my disability, I would be facing a short-lived life in which I would be a severely mentally and physically disabled , vegetable,  and would have no real quality of life. Because of this, they said, my parents should just allow them to medically starve me to death. They didn't. 

I've lived my life motivated to prove those doctors (whom I've never met) wrong. Not only did I graduate from high school, but I also received my bachelor's degree. I moved away from home to go to college, determined to figure out how to take care of myself. I learned to drive, with a convertible...because I didn't want the cliched "special van". I've gotten married, held down jobs, and bought a house. Not bad for someone with no quality of life. If only those doctors could see me now...      

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  I’m Lisa, I’m 38 and I live in Auckland, New Zealand.  I have Spina Bifida at Levels L4,L5 and S1. 

I am currently at university full time and have a part time job.  I’m studying a Bachelor of Arts in Psychology and Rehab.  I completed another degree when I finished school majoring in Human Resources.  I’ve been working full time since then.

I live independently and pretty much look after myself.  I am very independent and sometimes struggle to ask for help (even when I should)

I had an amputation below my right knee four years ago.   I originally wounded my foot and due to SB complications I ended up with a bone infection.  I eventually asked my ortho to amputate which was a great decision for me.  I am walking again and have to use a splint on my left leg.  I hate the splint, but I have to wear it if I want to walk.  I use a wheelchair for long distance as I get tired.  I don’t use any other mobility aids to walk.  I learnt to drive at 17 and absolutely loved it.  It gave me more independence.  I had to relearn to drive with hand controls after my amputation.  Took me a while to train my brain that the foot was no longer there to brake…haha!

I struggle more with the incontinence/bowel side of SB.  I have been trying for 2 years to get some help in this area.  I get very embarrassed when I have an ‘accident’.  This puts me off having a relationship as I feel insecure. 

I have amazing friends (both able bodied and disabled).  I am very lucky with the good friends I have.  

My family struggled with my amputation and I haven’t seen them since I had it done.  I think my mother in particular carries a lot of guilt which is unnecessary.  I don’t blame anyone.  It was just bad luck.

I love going to movies, concerts, trips away, dinners out, wine and cheese (lol)

For the most part, my life is pretty normal.  Yes I have some things I struggle with, we all do.  But I’m ok with it most of the time....  I’m just trying to be honest.  It’s not all bad, it’s not all great either.  Just like everybody’s life I guess

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Monica- It both saddens and angers me that parents are told the same thing mine were 49 years ago. I am an RN, a mom with two great kids, a grandma, a wife with a great hubby. My life is not perfect- but whose is? I am just like everyone else, playing the hand I was dealt the best I can. Just because you have medical challenges does not mean you have no quality.

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 Mary-  I feel incredibly blessed that my parents were so motivated from the beginning to ensure that I had every opportunity to reach my full potential, while maintaining as "normal" a childhood as possible. I am especially thankful that they found a medical team with the same philosophy of care. There was very little "sugar-coating" of information-I don't like surprises. I wanted to know what the adults were talking about. I wanted to learn all the "big words." I felt more involved in MY care because I was more informed. I became more involved>doctors talked more and more to me vs. my parents>I started feeling more confident, independent>improved quality of life. Spina Bifida is just one piece of me. I have a masters degree, work full time, own a condo, pay taxes and healthcare premiums(ok those 2 aren't so great); I am a sister, a niece, a daughter, a granddaughter, an aunt, a cousin, a neighbor, a friend. And guess what, no doctor could have predicted any of those, either! Quality of life is something unique to each individual~it's not found in a book. It is not a diagnosis~

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Sarah- I am 27, from Australia born with myelomeningocele. I also have a brother and sister born with myelomeningocele. A lot of people assume life with spina bifida is really tough and I suffer. While there certainly are hard times, I love my life and wouldn’t change it for the world. I do some things differently but it doesn’t mean I can’t do them at all. I study full time, have an amazing boyfriend, am learning to drive and one day hope to work in the disability field, advocating for those with physical disabilities. And hey, I’ve even skydived! I believe attitude plays a huge role in determining the quality of our lives and I chose to live happy.

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My name is Jane. I'm 21 and I have myelomeningocele spina bifida, L4-L5. My parents were told that I would never walk, talk, attend mainstream school, and one doctor went so far as to say I would be "a vegetable by age 5." None of these predictions came true! I can walk using crutches for short distances, but I do use a wheelchair or a scooter for long distances. Even if I couldn't walk, it wouldn't be the end of the world. My wheelchair and my scooter actually give me more independence! I can run errands, carry things on my own, play wheelchair basketball, and even dance. Doctors were also wrong about my ability to talk. Not only do I talk, but I have written and presented speeches for large audiences. I have participated in a speech competition. I'm a bit rusty now, but I used to be able to speak French pretty well. I love to write, and even have a blog about social justice issues. I can sing, too! In high school, I took voice lessons, piano lessons, and I was the lead singer of a jazz band. I was one of only 25 students to be chosen for the Honors concert, and was also chosen to appear in an ad for the school. I sing in the liturgical chorus at my college's Sunday morning Mass every week. Not only have I always attended mainstream schools, I have been in honors or accelerated programs since 5th grade! I graduated sixth in my class in high school, and I have made the Dean's list (which requires a GPA of 3.5 or higher) most of my semesters in college. I suppose doctors were just trying to prepare my parents for the worst case scenario. Life with spina bifida can definitely be a challenge. I have had health problems, some issues with chronic pain, depression, and anxiety, and I was bullied when I was younger, but I am blessed. I have a wonderful family and group of friends who support me during the hard times and celebrate with me during the good times. Of course I have days where I wish my circumstances were different and wonder what life would be like without spina bifida, but most of the time, I love my life exactly the way it is and wouldn't change a thing!



My Little Joy, Full of Joy

 "This is the day the LORD has made; let us rejoice and be glad in it."

- Psalm 118:24

 

"A happy heart makes the face cheerful..."

- Proverbs 15:13a

 

 

Madi's little heart overflows with joy.  I love watching her every little move, and you very rarely see her without a smile.  She is always singing, smiling, laughing, hugging, and is so very sweet.  She doesn't let a little thing like spina bifida get her down!  Here's a recent video from Jumpstreet, a local indoor trampoline play place.  That girl lights up the room!

 

 

(We hold her and jump, but her favorite thing to do is go down the trampoline at the top, so she does it about 100 times each visit :))

 



 



Our Spina Bifida Walk-N-Roll

First off, I want to say THANK YOU to everyone who donated and participated in our walk-and-roll for Spina Bifida.  I know Madi felt very special being surrounded by those those that love her.  Team Madi raised over $500 for the local chapter and we are so grateful for each and every one of you that donated!



Secondly, I want to say a bit about what I noticed at the walk.  Too often, I talk to moms who just found out their baby has spina bifida and they were told by their doctor that their child would have no quality of life.  It's absurd, absolutely absurd.  When I looked around at the walk-and-roll, I was taken back at all of the life I saw.  These kiddos were not just going through the motions.  They had a twinkle in their eye and they were genuinely happy.  They were full of smiles and laughs.  Their leg braces and wheelchairs didn't slow them down one bit.  They had a true love for life and they were inspiring to watch.  I am not saying spina bifida is always a walk in the park, nor am I saying that every person or child with spina bifida loves every little part of their life (who does!), but what I am saying is that these kiddos have an amazing spirit and love for life.  If you asked them, they would not tell you they had no quality of life, but instead, that they loved life!

We decided to deck out Madi's chair and it was a lot of fun!  I think we're going to make it a tradition and decorate it every season.  It sounds like a great tradition!

Here are some photos from the day...

From left to right: David (dad), Umpa (great-grandpa), Conner (brother), Uma (great-grandma), Madi (the little star) Papa (grandpa), Grams (grandma), Nathan (cousin), Jamie (mom), Kim (aunt), Grammy (grandma)

Taking a little break to run up the mountain

I did it!



This is own, Madi's friend.  They were showing off the rainbows on their arms.  Owen showed Madi how to pop wheelies at the last Spina Bifida Association party in December.

Madi's cousin, Nathan

Madi's great-grandma, Uma

Madi's buddy, Ezra

Dancing :)

It was a great day!!!

Spina Bifida Stories: Michelle

I was born in 1971 - the early days of spina bifida. I was born with Myelomeningocele (L4/L5) and hydrocephalus. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

 

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

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Our Spina Bifida Awareness Photo for the Day...

Whenever you hear someone say that children with spina bifida have no quality of life, think of this smile.  I think it says it all.....