There is a beast that lurks in my home. Often we think that the beast has left and we allow ourselves to let down our guard. The beast always returns, the beast always reminds us that he is not gone, the beast terrifies me. The beast is often subtle, only appearing in the slightest nod or tiniest twitch, but the beast knows I am a mother and I will notice these things, even if nobody else does. The beast appears in many forms, many brush it off, like it's okay, but it is not.
We not so lovingly refer to my sons epilepsy as the beast. I have wanted to write about the beast for a while but that makes him real and although I am aware of how present he is, I try not to acknowledge him. He is hard to ignore when I watch my sweet 5 year old play his DS and in an instant, smash his head into his knee because he has lost consciousness and all muscle control. My son is hardly aware of his presence, all he knows is that his head hurts and he just lost a man in his game. This was just a quick reminder that the beast is still lurking. We can go days without the beast appearing in this manner. It has been a very long time since we saw the beast in all his ferocity... I hope to never see it again, for now, we have the beast at bay.
The beast is subtly here every day. He presents himself in an awkward gait, weakness, exhaustion, poor impulse control, poor attention, delayed social skills, temper tantrums, food obsessions, routine rituals that cannot be broken... The beast however cannot defeat an unbreakable spirit, a kind heart and a willingness to give to others. The beast is no match for my boys heart.
The beast has hurt the hearts of those who love my boy. Those who see him each and every day, those who watch him struggle! Those of us who love him get to deal with dirty looks when he behaves in a way that is not always acceptable. We get to watch others look knowingly, because they have, in all their wisdom, figured out he is a kid with no discipline. I have made more than 1 grown woman cry as I have explained what he has been through, this after acknowledging her "knowing" glare, tsk tsk or eye roll. It may seem petty, but this gives me pleasure. Those who love him have high hopes and expectations, we know he is capable of doing amazing things. My boy captures the hearts of those he meets. The odd teacher or coach sees his potential, sees what is hiding underneath. They do not baby him, they do not expect less, they nurture and in turn they fall in love and he shows them how brilliant he is. There are the teachers that panic, do not see how capable he is, do things for him and see him as a thorn, rather than a rose. Those teachers do not get to see how brilliant he is because he shuts down and will not let them in. This is sad for those teachers because they could have had the opportunity to see just how amazing he is, if only they had given him a chance.... Kindergarten has been a write off, I am not sure there is much to salvage, hopefully grade 1 is amazing
My boy has Myoclonic Epilepsy. He had his first seizure at his grandparents house on March 27, 2008. The ambulance was called and it was a moment that forever changed our lives. It is a moment forever etched in the mind of his grandparents. In the months following that seizure he had thousands, yup, I am not exaggerating, sometimes hundreds a day in different forms. It could be little jerks, it could be "zoning out", It could be smashing his face and head or it could be a full body convulsion. He has many different seizure types and they are all horrible, although some are more tolerable for me, as his mom, to watch. He became non verbal, stopped making any effort to communicate. I yearned for an "I love you" for months. To hear him sing again would have been a blessing. He was a guinea pig for the doctors, they tried so many drugs. Finally after months, we found a drug that worked. His beautiful curls fell out, but the seizures became less and less. One day while sitting in McDonalds Drive thru, a small voice started to sing "twinkle, twinkle, little star...." I started sobbing, my boy was back. The boy that came back is different, he struggles as I have mentioned above, but I would not change him for the world. The seizures are for the most part controlled, but the beast likes to pop in to say hi a few times a month, lately every week. Stupid beast.....
I want people to learn about my son and his epilepsy. People assume he is okay because he no longer has hundreds of seizures. People do not understand why we worry about that damn other shoe dropping again. People do not understand how hard it is to watch him struggle, people do not understand the panic each time we see a seizure. Every illness makes him sicker than the other children, 1/2 a day at kindergarten exhausts him, people do not understand why this hurts our hearts. We have a long road ahead of us. As the neurologist described, "You are deep in the woods, maybe in a clearing but you have a long way until you are out of them". We will continue to fight until we find our way out of the woods. We know there will be ups and downs, we know there could be an additional diagnosis as we wait on his upcoming assessment to determine if he has Autism. As for the epilepsy, we wish there was a definitive answer as to what the prognosis is. An answer, good or bad, would be better than not knowing at all. The Neurologists do not even wager a guess, nobody knows what his future holds.... except me.... none of this will change how amazing he is and none if it will change our expectation that one day, he will move mountains!!!
Phew, that was hard to write.... I am crying, I am sad but I am so very thankful and so very honored to be his mother!
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