Dravet Syndrome Stories From Those Who Know

I AM EXHAUSTED!!! No, I haven't done anything strenuous, I haven't been up all night, and I haven't really done anything physically tiring! I am just exhausted, ALL the time. It's like a bone deep emotional exhaustion, one that is with me every moment of every day. Some days it's not so bad, just kind of in the background, and other days it is almost debilitating. This is just a constant in my life, I'M EXHAUSTED! I am exhausted from more than ten years of constant stress that comes from being a mum of a special needs child. You don't get to experience the joy of watching them reach their milestones and become more and more independent each year. No, even after 13 years I am still bound just as tightly as when he was a toddler and there is no way of knowing if this will ever change. That is EXHAUSTING!

Exhaustion is not alone though, there are many other feelings keeping it company –

Grief is a heavy one. I feel grief over the life my son will never have and all the experiences he will never have and how all of that affects us as a family. As I watch other children grow and develop and become more independent I feel grief that even at their younger ages they have overtaken and outgrown him. I feel sad that at the age of 13, now an official teenager, he cannot be left unwatched and no matter where we go we can never just sit and relax while he plays. Even while sitting chatting to friends I am always alert to where he is, what he's doing and what the risk is to him if he has a seizure while doing that activity. I feel grief that the other children don't want him to play with them because he doesn't understand their game or he gets in their personal space and makes them feel uncomfortable.

Guilt follows behind worry. Because I AM aware of how lucky we are to have him in our lives and how much better our lives are by having him with us and how his disabilities have made us stronger, better people. I know that not every parent is as lucky, some have experienced the horror of losing their child, which I find unimaginable, and the parents whose children will never be able to utter the words “I love you”. For these parents I feel guilty about my ‘seemingly insignificant' worries. For this I try to appreciate every day with my children.

Worry is a definite constant in my life. I know that with being a parent comes worry but being a parent to a special needs child brings its own set of worries. I have the obvious worries like when, where and how long the next seizure will be and will he be okay from it, and fretting about have I done everything I can to ensure his safety, or I stress over his education and development (or lack thereof), then there is also the side effects from his medications that cause him to not want to eat causing us to worry about his failure to thrive and gain weight. The list of worries from medical related issues is endless but it is other issues that stem from his special needs that also plague me. I worry about my other children and how hard all of this is on them. The daily struggle of dealing with his behavioural needs and their lack of privacy and personal space whilst still trying to remain calm and remember that this is part of who he is, is a battle that they don't always win. Many a time I have had to intervene, asking them to walk away, calm down or take a deep breath and just try to understand. It upsets me when I think of the multitude of times they have been responsible for alerting us to a seizure and turning him on his side for safety till we get to him. They have dealt with this from very young ages and even though they have grown up thinking that is the “norm” for our family it still saddens me to see the worry and fear in such young innocent eyes. I worry about how they will deal with this burden when all their peers and closest friends have no idea what they live with every day and therefore they have no outlet other than inside the family where I worry they might not disclose everything for fear of offending or upsetting someone they love.

So, I love my family dearly and I am SO grateful for all that they bring to my life. I get immense pleasure out of my amazing children and the infinite love they give. I appreciate my closest circle of friends that listen to me tirelessly and never give up on me no matter how many bad days I have. But some days it feels very lonely to be a mum of a special needs child. Sometimes it feels like no-one else around me really gets what I live with every day and how terribly tiring it all is. Some days it just feels too heavy to deal with alone and I just want to curl up in bed and sleep a few days away in the hope that I will wake up feeling “normal” again. Some days I just wish...