Treasured and Enjoyed

Often when I meet parents with young children or people who live with epilepsy, (or any other genetic conditions) the first question they ask me is, “What medication are you on?” These days I have a general response as my TSC has stabilized, I have therefore found medication that works for me. However, this has not always been the case; when I was two years old, I was officially diagnosed with TSC. My paediatrician at the time, (Dr Greef) put me on Tegratol in the hopes of keeping me alive, (while my mother found a paediatric neurologist). It worked.

My mother and father struggled greatly to get me to drink the syrup. Each evening my father would hold be down, while my mother forced a syringe into my mouth. It was a difficult process for both of them. Eventually, my mother tried tasting the medicine; it tasted like battery acid! She finally understood why I disliked it so much. Regardless, it kept me alive and functional, thus I just had to suck it up.

As time past, all was bliss. We met Dr Aduc for the first time when I was nine; she was the best doctor I had ever encountered at that point. She monitored everything and anything, adjusting the Tegratol as my body changed. This worked, until I hit puberty.

Puberty is already strange and difficult for normal teenagers. For kids with genetic conditions, puberty is ten times more challenging. My body completely rejected the Tegoral. I went from having 3 seizures a week, to having 140 seizures a week; or 20 seizures a day. Dr Aduc and my parents tried everything, from Epival to Epilim. A to Z down the medication list we went; my body rejected all of them. Eventually, due to all the seizures I went into a trance like state. Everything slowed down, my schooling stopped, it felt as though the world had stopped. I would go to bed not knowing whether I was going to wake up the next morning. Life was a blur. Just a side note to the parent reading this – I have no memory of those two years, I rely a ton on my mother to feel in the blanks for me.

Finally, after two years of non-stop research, Dr Aduc found a medication called Keppra. New on the market, only tested on adults in the USA; I was the first child to use Keppra in South Africa. It was risky, as I was young, regardless of this, my weight allowed me the opportunity to try the medication. The Keppra worked. My seizures were reduced immensely, and I came out of my trance. My parents were grateful, as was I.

My seizures have been stable ever since. As time has passed, I have experienced other complications which, have affected my medication; for example: weight, diet and other hormonal changes. The most challenging “complication” however, is taking my medication on time. Therefore, since I started the Keppra all those years ago, I set two alarms on my cell-phone. These help me to take my meds exactly 12 hours apart, which has help tremendously to keep my body balanced. What I have learnt from the whole journey is; it takes some experimenting in order to find balance. Once found, balance should not be taken for granted, it should be treasured and enjoyed. 

Medication Alarms 

Medication From Dischem

Orange pills - Tegratol. Yellow and Blue Pills - Keppra

Do you Embrace Life, or Fear it?

People all around the world, are judged, criticized, and compared by others on a daily basis. People are always feeling this constant pressure, to be perfect. Parents and children, with any type of chronic disease, end up being incredibly self conscious about themselves. TSC more often then not, causes outward manifestations on the surface of the skin; i.e. Angiofibromas (facial lesions), and Hypopigmented Macules (white leaf shaped patches on the limbs). These outward "side effects" cause us to stand out more. Consequently, human nature, causes us to be a bit more paranoid than our peers.

When I was eighteen, I asked my father, if at any stage he was ashamed of my condition. His response surprised me. "Yes," he said in deep contemplation, "I was embarrassed for you, watching people stare at you. People are stupid, it really irritates me, because the are ignorant, they are always suggesting things; "have you seen this dermatologist?" or "here let us pray for you". As your father I feel as though I have to fix your face. But even if I was a millionaire I would not be able to fix your face." As a parent you want to protect your child, or children, you want to help them, or "fix" them. This is understandable. 

I had fallen in love, with the Montessori method, because of her focus on independence. Allow me to explain. As a parent, you feel the need to protect your child, this we have established. However, (based on observation) I have come to realize, there is a thin line between protecting and coddling children. Unfortunately, coddled children posses the following characteristics; firstly, laziness; "Oh, I can't learn to do that, because I have TSC." Secondly, Fear; "Oh no! am I allowed to bake? What if I have a seizure and burn myself? Am I allowed to swim? What if I have a seizure and drown?" And thirdly, manipulation; "Stacy's mom, my blood sugar has dropped, if you don't give us desert, I'm going to have a seizure." Please understand what I am trying to say. Children do not have to have a chronic disease the develop these traits. However, it is easy for children with a chronic disease such as TSC to develop a victim mentality. 

Once this happens, you end up with another problem; low confidence. What people have called "low confidence" is actually just fear... allowing fear to control you, which brings us back to independence. I'm not saying, do not keep your children safe, I'm saying allow them to experience life. even simple things make a difference. "Here Sweetie, you carry your school bag today." "Wow! Josh, you climbed the rope ladder all by yourself!" "Here, it is your turn to flip the pancake Stacy." Why? Why do this? Well, if their is one thing I know it is this; blaming people is easy, blaming a disease is easier. It becomes an excuse to hide, and the more you hide, the more difficult is to smile. I'm not talking about a mask, I'm talking about sincerity, it become difficult to be sincere. The best thing my parents ever did, was teach me independence, never hide, stay honest, stay in communication, and stay kind. You get two types of parent - One who embraces life, and one who fears it...

Which one are you?                    

Patience, Guidance, and Time...

As a parent, is the education of your child important?
If so, then wouldn't the education of a child with learning difficulties be even more so?
There is a distinct difference between learning DIFFICULTIES, and learning DISABILITIES.

Learning Difficulties; [noun] Difficulties in acquiring knowledge and skills to the normal level expected of those of the same age.

Learning Disabilities; [noun] Learning Disabilities refer to a number of disorders which may affect the acquisition, organization, retention, understanding or use of verbal or nonverbal information.

Learning Barriers; [noun] A barrier to learning is anything that stands in the way of a child being able to learn effectively. A learner may experience one or more barriers to learning throughout his or her education. ... For example extreme poverty, abuse or neglect will all act as barriers to a child's learning.

At the age of twenty, I was working at a Montessori school; when a mother walked in with her toddler. The young child was between the ages of two and three years old. As she toured the school, the mom pleaded for the acceptance of admission for her child... her request was declined. My supervisor at the time had his reasons, however the fact that the little one had epilepsy was at the top of his list. This decision upset me greatly, unfortunately as the twenty year old student teacher, with less then six months experience, my opinion did not matter.

The fact that a school, who boasted in a theory; designed to aid in the education of children with learning difficulties and barriers, would refuse an epileptic child puzzled me. As a toddler, I myself was welcomed into a Montessori school. It as the greatest act of kindness, bestowed on my family at the time. The teachers were kind and patient, making exceptions when needed; for instance my father popping in every now and then to give me my medicine. The hands on learning aided me in over coming my learning barriers; by allowing me to repeat the work as many times as needed. Personally I feel as though, this was proof that the theory worked. (I have been "obsessed" with it ever since).

As time progressed a Montessori school was no longer optional. We needed to find another school. This was not an easy task however, as no one would accept me. Eventually my parents agreed that home schooling would be best. Adopting many different theories my mom would teach us from roughly 08:00 am-14:30 pm each day. It was a success; (besides the two year gap between the ages of 10 - 12 years old) as discussed in my previous post). This method of education aided my mom, in keeping track of my health, and abilities. For instance, unfortunately I do not grasp the concept of mathematics very well, therefore I had to exchange Math core, for Math literacy in GR 10. However besides no longer being able to become an archaeologist, I still passed matric. I have decided to challenge myself further by studying through UNISA (the University of South Africa).

I understand many people, and children like myself have learning difficulties. However learning is not impossible. With patience, guidance, and time we are capable of understanding the world around us. It is with this hope, I am driven to encourage you. It is with this hope, I am driven to share the rest of my story with you.

Living with TSC; It may seem daunting... But it doesn't have to be...

Have you ever felt like the world was against you? 

Have you ever felt like life is impossible, and you can't go any further? 

I know I have. It was during one of these moments, were my parents gave me some remarkable advice.

"Your father has a motto," my mother said to me one evening; "A life without strife, has no colour." 

I was thirteen at the time. Confident that I understood what it meant, I would repeat it over and over again when times got tough. However one day upon visiting my doctor, it occurred to me; my understanding was impaired.

The quote does not mean; "Go looking for trouble, because that will make your life interesting." Nor does it mean; "That you have to suffer through everything negative, because that is your lot in life."

The quote means; " A life without rivers to cross, and mountains to climb, has no adventure." 

Looking back on my childhood, I now realize that there were many interesting adventures, and learning experiences. Whether you are a parent with a child who has Tuberous Sclerosis Complex, or you, yourself have TSC, or even if you have a family member with TSC, I would like to share some of my adventures with you. 

Embrace the Adventure