Me And My Spina Bifida
THE BEGINNING:
I was born July 20, 1983. My story really starts before that tense,touch and go day though. From the very start there were major issues. Then once I arrived the doc gave my parents little hope of their precious baby living through the night. But my parents being children of the ALMIGHTY GOD,the GREAT PHYSICIAN refused to give up hope. They refused to follow docs advice of institutionalize me and forget about me. My parents just couldn't imagine completely giving up on something/someone they wanted so bad to have in their life. No life has not been easy at all for any of us but what we have had to go through has definitely made us stronger.
SPINA BIFIDA & HOW IT AFFECTS ME:
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.
Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Intrauterine surgery for spina bifida has also been performed and the safety and efficacy of this procedure is currently being investigated. The incidence of spina bifida can be decreased by up to 70% when daily folic acid supplements are taken prior to conception.
I was born with Myelomeningocele which is THE MOST DAMAGING form of Spina Bifida. Like I said earlier because of the severity of my SB by medical standards of 1983 I SHOULD NOT be alive today. As a result of having Myelomeningocele I am partially paralyzed from my waist to my knees and totally paralyzed from my knees to my toes. Because I am only partially paralyzed from my waist to my knees I am able to walk with the aide of legs braces and forearm crutches or a walker. I have use of the muscles that are in the fronts of my thighs & the tendons & ligaments in my knees. But, I have no use of the backs of my thighs, no use of the muscles from my knee down to my toes.
Since I hit my 20's I started gaining weight and it got to the point where my docs were basically giving up and condemning me to life in a wheelchair. Well being the fighter I am I couldn't accept that. I had to do something. So I got 1 doc(1 doc is all it takes most of the time) to listen to me. He helped me fight my condition and I am happy to say that now in my late 20's I am half the woman I was in my early to mid 20's.
After a grand total of 59 surgeries over my lifetime thus far I am HEALTHIER than I have EVER BEEN.
WHEELCHAIR USE:
Even though I am able to walk with braces & crutches or my walker, when I was in school I was wheelchair bound going from point A to point B and out on the playground. But now as an adult I haven't used my chair since December of 2009 and I DO NOT intend to start any time soon. LOL.
FAMILY:
I am the 3rd of 6 children. I have 3 sisters and 2 brothers. But we don't all have the same combinations of parents. Only 1 of my sisters has the same mom and dad as I do. All the rest are either adopted(by heart,not legally),half or step siblings. But I love them all the same. From my 3 sisters I am blessed with 3 beautiful nieces and 3 handsome nephews and 1 more nephew due the end of September 2019.
MY FAITH:
As far back into my past as I can remember mom always got me and my baby sister up early Sunday morning and got us ready for church then sent us next door to our friends Jan & Curt Egge. Jan was my sister's Sunday School teacher & she & Curt took us to the church for Sunday School. Mom would get to church in time for the service to start. Because I was so ill most of the time mom & dad had me baptized a couple times. But it wasn't until 2001 at the age of 18 that I was truly ready to surrender and give my life to my Heavenly Father. So that summer my dear friend Kim who had been doing a 1 on 1 Bible study with me on baptism baptized me for the 3rd and final time.
Shortly after I graduated from high in 2002 my biological father, my baby sister & I took a family trip down to San Clemente,CA to visit dad's oldest daughter Stephanie. That was my graduation gift from dad's aunt and mother. Before we left dad had some tests run to try and figure out why he had been so ill that year. When we got home his results came back. He was diagnosed with Small Cell Lung Cancer. So for the next year he battled it with his mom, aunt, my mom, step dad, me and my baby sister by his side at all times. For part of that time my baby sister took him for his treatments. But when she had to go back to being a full time high school student I accompanied dad(even though I can't drive). I used that time to read scripture to dad. I prayed with and for dad during that time. I just reassured dad that EVERYTHING WOULD BE O.K.
I found out the day of the funeral for dad that because of the time I spent with him that in his final days he too surrendered and gave his life over to our Heavenly Father.
I was born July 20, 1983. My story really starts before that tense,touch and go day though. From the very start there were major issues. Then once I arrived the doc gave my parents little hope of their precious baby living through the night. But my parents being children of the ALMIGHTY GOD,the GREAT PHYSICIAN refused to give up hope. They refused to follow docs advice of institutionalize me and forget about me. My parents just couldn't imagine completely giving up on something/someone they wanted so bad to have in their life. No life has not been easy at all for any of us but what we have had to go through has definitely made us stronger.
SPINA BIFIDA & HOW IT AFFECTS ME:
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.
Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Intrauterine surgery for spina bifida has also been performed and the safety and efficacy of this procedure is currently being investigated. The incidence of spina bifida can be decreased by up to 70% when daily folic acid supplements are taken prior to conception.
I was born with Myelomeningocele which is THE MOST DAMAGING form of Spina Bifida. Like I said earlier because of the severity of my SB by medical standards of 1983 I SHOULD NOT be alive today. As a result of having Myelomeningocele I am partially paralyzed from my waist to my knees and totally paralyzed from my knees to my toes. Because I am only partially paralyzed from my waist to my knees I am able to walk with the aide of legs braces and forearm crutches or a walker. I have use of the muscles that are in the fronts of my thighs & the tendons & ligaments in my knees. But, I have no use of the backs of my thighs, no use of the muscles from my knee down to my toes.
Since I hit my 20's I started gaining weight and it got to the point where my docs were basically giving up and condemning me to life in a wheelchair. Well being the fighter I am I couldn't accept that. I had to do something. So I got 1 doc(1 doc is all it takes most of the time) to listen to me. He helped me fight my condition and I am happy to say that now in my late 20's I am half the woman I was in my early to mid 20's.
After a grand total of 59 surgeries over my lifetime thus far I am HEALTHIER than I have EVER BEEN.
WHEELCHAIR USE:
Even though I am able to walk with braces & crutches or my walker, when I was in school I was wheelchair bound going from point A to point B and out on the playground. But now as an adult I haven't used my chair since December of 2009 and I DO NOT intend to start any time soon. LOL.
FAMILY:
I am the 3rd of 6 children. I have 3 sisters and 2 brothers. But we don't all have the same combinations of parents. Only 1 of my sisters has the same mom and dad as I do. All the rest are either adopted(by heart,not legally),half or step siblings. But I love them all the same. From my 3 sisters I am blessed with 3 beautiful nieces and 3 handsome nephews and 1 more nephew due the end of September 2019.
MY FAITH:
As far back into my past as I can remember mom always got me and my baby sister up early Sunday morning and got us ready for church then sent us next door to our friends Jan & Curt Egge. Jan was my sister's Sunday School teacher & she & Curt took us to the church for Sunday School. Mom would get to church in time for the service to start. Because I was so ill most of the time mom & dad had me baptized a couple times. But it wasn't until 2001 at the age of 18 that I was truly ready to surrender and give my life to my Heavenly Father. So that summer my dear friend Kim who had been doing a 1 on 1 Bible study with me on baptism baptized me for the 3rd and final time.
Shortly after I graduated from high in 2002 my biological father, my baby sister & I took a family trip down to San Clemente,CA to visit dad's oldest daughter Stephanie. That was my graduation gift from dad's aunt and mother. Before we left dad had some tests run to try and figure out why he had been so ill that year. When we got home his results came back. He was diagnosed with Small Cell Lung Cancer. So for the next year he battled it with his mom, aunt, my mom, step dad, me and my baby sister by his side at all times. For part of that time my baby sister took him for his treatments. But when she had to go back to being a full time high school student I accompanied dad(even though I can't drive). I used that time to read scripture to dad. I prayed with and for dad during that time. I just reassured dad that EVERYTHING WOULD BE O.K.
I found out the day of the funeral for dad that because of the time I spent with him that in his final days he too surrendered and gave his life over to our Heavenly Father.