At night I often heard my mom Praying in her closet to God. "God a child is born unto this world who needs protection...please guide him and protect him"
She did not know how to accept at times something was different and always put on a brave face but in the night when the memories of the day are most relevant that is when she prayed most.
I heard her on many occasions asking God for strength
I had some learning disabilities of coarse My mom didnt want me to be in special classes
Back in the 70's and 80's we were no where near acceptance like we are today
There were no support groups and awareness days. People did not even know what ADHD let alone how to treat. basically anyone from a stutter to a limp was placed in the same class or special needs class. Luckily I was in mainstream classes and I just dealt and tried to find clever ways and words to answer peoples questions
My mom pushed or me and wanted me in school like everyone else...didnt do to well but i seemed to learn in a different way.
Its rather amazing how the Brain learns to direct new paths when it is disruprted
I got picked on and beat up a lot...most the teachers let it happen Most teachers back then were not slapped with lawsuits and reprimanded for letting this stuff happen. But hey it made me stronger!
...my sister was an influence on me too...we use to fight but ironically, she was my biggest protecter in school. I have to say looking back what at the time felt like I was wading in mud turned out to make me strong and independant and I now realize how difficult the life of a mother is. even one without any medical issues. (props to my mom)
Once in jr high i started to fight back with useless effort but i guess it was the will to be like everyone else...i started to try things like bicycles, skates, scooters,, about anything i saw anyone else do i tried...half the stuff i did i got hurt but hell i was use to getting hurt so i kept on..throughout this whole growing process i didnt realize some of the symtons of schiz..so i ignored them.. At that point I had no idea what schizencephaly even was.
In Highschool I realized they were not teaching me the things that interested me so I became influenced by other things and left. Knowing I had a bigger plan in life and school just is not for everyone.
After highschool..Ii was forced to read the bible a lot.
I was always made to read the Bible, but way more after I left School
One day something just clicked in my brain when i watched my mother paint
After I voluntarily left high school, like any young adult i was lost not sure what i was doing just floated around had jobs lost them my dad showed me what was up with working and did what he could to get me to see how to present myself first job
I had i had no car so dad said “you have a 10 speed to get there so get to it.” .of coarse he helped me get what i wanted and needed but most of all showed me not to start fights or fight at all but still don’t take junk from anyone. (Dads are great in that way)
My biological mom was a major influence on me too.. We always played paddleball, racquetball, and our favorite badminton she was athletic type and kept me aggressive and always encourage me to always look deep inside myself and know and be happy who i am.. These subtle things my family did without me realizing made a powerful imprint in my mind. One of the best things she told me was everything is in moderation. She gave me much insight on life and how God leads you in the right direction if you just let him she was the one that lead the family into the way we are now way before I was born.
Our whole family was pretty tight I am the youngest of 5 children. I Had a lot of encouragement from all of them...through it all I always had my leg problems or odd things like twitches my body always had a hard time keeping up with me got so use to pain a lot was just ignored like I said I got use to pain.
My mother persuaded me into going back to community college and getting my diploma which led her into actually going to college and even went a step further to go to college with me..(this is probably a good reason I stayed interested. The support was amazing)
We took graphic arts together we went from learning together into me helping a lot of people in the class...so much so I clearly remember her getting upset one day saying “ I’m your mother you help me first!”
Things really progressed after that then I found my first real job in graphics while I was in school and of course did what any young impatient adult would do I quit college to work there kind of regret it but it happened...AND I never looked back and always had a job in graphics since 1991 only changed jobs 4 times since. I have never been on disability, never got government help.
Years went by working I got married I actually married someone that was born with hearing disability (met her in college) deaf in one ear and partial hearing in the other with help from a hearing aid..i sorta (in my country accent) forgot about being "crippled" Maybe I was less focused on that then because things were just like so normal. We bought a townhouse soon after she got pregnant...first thing I thought was wonder if she will have what one of us had. At that time I was only aware I had some form of Cerebral Palsy and my wife was hearing impaired. So take the fear of any new mom and dad wondering if the baby would be healthy and magnify that with two parents that had some issue and you will understand that fear... I still at that time had no other diagnosis and was not aware I had Schizencephaly.
Luckily things were cool we had a baby girl with no problems in 1998 after that I really forgot about what I was dealing with and my attention was on my beautiful new daughter
Many moms have approached me asking what their children may go through wth and during and especially after seizure episodes. I appluad Kirk for sharing this with all of you. This will tell you from someone living with Schiz exactly what the medications were causing him and how he learned which medications were right for him. I know this will help many of you so props for Kirk to talking about this to ease some fears and shae some insite. Tricia
So life was good for a while, after the Birth of my daughter I began a new chapter in life. and as most high's during those peaks there is always a drop somewhere. Shortly after Tephie's Birth my mother had a stroke, while getting a cath..She lost her vision and that’s when my stress began. As if that were not enough we then found out she had diabetes and had a lot of complications with it. So for years she had been fighting for me the tables had turned, I was worried about her all the time and Now I was the one that had to push her to fight.
My mother was so strong and never saw me as a child that was any different. I wanted to push her more and realized It was my time to just compose my strength into Prayer and support.
My dad had it very hard stayed by her side every minute and took care of her. You really do not realize it when you are engulfed in worry but I had a lot of stress that my body was started to feel it couldn’t handle.
Years passed then one day she went into a diabetic coma and was in the hospital on life support for a month or so. I used to go up to the hospital every day sing to her I readher the Bible as she often made me do to find ansers or much needed stregth from above. Maybe I just believed she would be comforted by my voice and hear my appreciation for all those prayers in the dark she never knew she made.
Then that dreadful day the doctors said she wasn’t going to come back to us, Nothing prepares anyone for these days and you go through a desperate moment wanting to just have one more day, one more talk and one more chance to tell your mother you are so grateful for tough love. we as a family had a very hard decision to take her off life support (as anyone knows making this decisions is not only a spiritual and mentally draining one but something you sit hours agonizing over. .I made it just in time to see her off with the family when she passed in the bed I fell on top of the bed and just wept and screamed.
It was devastating after the funeral I was a zombie didn’t eat for days now I was the one saying prayers in my dark asking God to Care for my mother. As she was in His hands now.
And one night I went to bed and had a huge grand mall seizure in my sleep woke up delirious.freaked my wife out at the time...went to see doctors they did test but I was stubborn and didn’t like doctors and didn’t follow up like I was supposed to.
A year past and I was having trouble in my marriage, pretty much was falling apart and that was bringing a major stress to my mind and overall wellbeing. We announced our splitting up, Shortly after One afternoon I laid down and fell asleep and had another grand mal seizure in my sleep ,that’s when I was rushed to the hospital. At that time in my life I almost avoided doctors but this continued to a point of having to face the facts I needed an opinion. More seizures led to tests, MRI’s, EEG’s, sleep test, and every kind of other test they do.
That’s when I found out I had Schizencehaly and I had no idea what they were talking about all they basically told me is that I had cleft and slits in my brain. And all I know is at that very moment I wish mom was there to finally get an answer to what she had been wondering all these years.
I kept insisting “I’m this way because of cerebral palsy, the lack of oxygen to the brain” they said “ yes when you were born this could Have been an issue but your Brain scan also shows you definitely have schizencephaly.
Being someone that avoided doctors my whole life (probably due to the surgeries to my leg and braces from youth) I Started seeing a neurologist regularly and he started me on seizure medications. My first introduction to seizure meds was Depakote 1000mg…. Errrr ..Wow!! What an adjustment there! Really noticed the side effects from the drug.
I began realizing the seizures changed me also. My balance was thrown off bad. feelings of vertigo ... spaced out where I could see people talking but I just stared with no emotion ... and I smiled on the outside but felt raged madness on the inside.
I leveled out somewhat but still had waves of those effects that went on for about 5 years.
At that time I was going through a separation and ended up getting my own place and of course began doing the “single man adjustments.” Spent a lot of time looking for answers what can be done about what I had and seriously not much to go on except the facts of what little was known about Schizencephaly and symptoms. As far as information, it just did not exist.
As time went on and I kind of gave up... then DR took me off of Depakote telling me it is a bad drug. It is known now to Cause pancreatic cancer and really bad for the liver He decided to try Lamictal and I took that for a while but I felt like it wasn’t right for me wasn’t myself just zombiefied and used to wake up at night and my limbs would lock up and always had trouble sleeping I lived in fear I was going to have a seizure alone. That Ugly side Of this Schizencephaly, The unknown!