So as I am sitting on my couch with headphones in, pen in my hand, and a blank sheet of paper. I am struggling with what my first blog should be about. I have so many things on my mind, so many thoughts and ideas, there is so much I would like to say. But how do i say it ? I finally realized I should just start typing. Just be open, honest, and free.
So this is A Mothers Perspective…
I remember the day like it was yesterday. So vivid and clear, August 23, 2014 I was told my son had epilepsy. I didn’t really know what to make of that , and to be completely honest I felt bittersweet. But before you think I’m crazy for using the word bittersweet in a situation like this, ill rewind back in time before 8/23/2014. So lets rewind a little, my son started having febrile seizures a day before his first birthday in 2012. For those who don’t know what febrile seizures are, its seizures some children have when they have a fever and usually grow out of them around the age of 5. The first few times my son had a seizure, I freaked out, I was devastated, I was scared to be alone with my own child. I wanted to help him and stop the seizures but I wasn’t capable of doing that. I felt helpless and didn’t think any one understood how I felt watching my child struggle and gasp for air, shake and drool uncontrollable, unconsciously rolling his eyes to the back of his head for what seem liked eternity. All I could do was make sure he was safe, call 911 for help as well as call on God to help and to spare him and bring him out of this seizure again. And then those febrile seizures turned into unprovoked seizures that had no known cause, and then he was diagnosed with epilepsy August 2014.
So back to feeling bittersweet…I was very bitter after the diagnosis I didn’t understand why, I didn’t understand what caused it. I just kept asking “why my son?” “what does this mean for him?” “will he grow out of it?” I had many many questions . But then I felt a sense of relief, I was thinking okay they know whats wrong with him, now all he needs is medicine and this will be all over. Right? No, not right. I was completely wrong, I never thought him starting medication would be the start of something I would have never even imagine. My son, my little baby started to have an increase in his frequency of seizures. He was having 1-2 grand mal seizures every week. He wasn’t the happy little boy I knew, he was tired, drained and moody. I was stressed, confused, I couldn’t work like I was before because I had to be with him so that brought on a lot of n burdens. I wanted to help him and stop the seizures so bad, but I couldn’t. I felt helpless and hopeless.
My Perspective now…
Today my son still has uncontrolled seizures and many different kinds but he doesn’t have them quite as often, still a lot to me but not as much as he used to. My son is so young and he doesn’t understand what his body goes through and I want to keep it that way as long as I can. I want him to enjoy his childhood and not have to worry about his health.Doctor visits and hospital stays are already enough of a burden for a four-year old but we make the best of those visits as well and ill show you how in a later blog. I’m sure many of you mothers with special needs children can relate to my experiences as being a special needs parent. It can be very stressful mentally, and physically but it comes a time where we have to accept things as they are in the “Right Now” moment. Being a mother is challenging enough but when you have a child that has special needs or a medical condition, we have to be mentally strong and put on our big girl panties and deal with it the best way we know how. There are going to be plenty of down times, and that’s when you seek help as needed, counseling or go to a local support group or join an online support group forum. We have to choose to be positive and uplifting for ourselves and our children with special needs. They need us and we need them. Like my mother always tells me “this storm will pass” you just have to get through the tough times. Be encourage 🙂 xoxo