You are not alone...

You are not alone...

I wanted my first post to be a little about my experience as a epilepsy mama, special needs mom, autism mom, just mom, and bruh (as my teenager likes to call me 🙄😂).
When we were growing our family never in a million years would we have thought that we'd have a child with epilepsy. Mainly because no one in either family had ever had seizures, there were no genetic diseases, or anything that would have prompted us to even consider it. We were adding the 5th child to the family, my 3rd pregnancy, and there were no concerns with the other kiddos that would have ever made us feel like we needed to do amniocentesis so we didn't.
Fast forward through the horrible pregnancy, labor and first few weeks of baby to her first seizure at 7 weeks old. It was literally a little tongue wiggle that seemed super weird to me. My mommy gut was shouting and what I've come to know is that it is NEVER wrong. It just isn't. It was a wild couple days with tests galore, and emotions we had never experienced. Along with that came the thoughts also.
What I want parents and loved ones to know is that the thoughts you have when your child is suffering a seizure, being diagnosed with epilepsy and all that comes with it... are valid. They are okay. I felt so guilty thinking all the things I thought. Like "Is this karma for something I have done?", "Was I not healthy enough during conception, or pregnancy?", "Did I somehow cause this?", "Why me?", "Why us?!", and just "Why?". In the grand scheme of things, having a child with special needs isn't anything I should have felt bad of. When other people out there are losing their children, dealing with much more difficult situations. It felt guilty to feel bad for myself. It felt selfish to want to be able to say "I didn't want this.", "I don't want to do this.", "It's going to be too hard.", "It's not fair.". They are thoughts I have heard many parents/caregivers/loved ones of special needs kiddos say they have had. And that they also feel so guilty and like a horrible person for thinking them. BUT we are human. We hurt. And we have to process it all before we can make any sort of sense out of it.
You are NOT a horrible person for thinking the thoughts. You are hurting. You are afraid. Afraid for your loved one, about your ability to be what they need you to be, the future. About what it means for your family and the life you thought you'd live. The idea of the person you thought you were going to have. The future you thought they were going to have. But our first neurologist said something to us that I have kept with me: "This will in NO way affect her happiness. It will only affect yours... if you let it. Focus on the things she CAN do, and don't worry about the things that she can't." And from that moment on, we did. We made a conscious effort to change our thinking. It took work, and time until it was just the way we thought naturally. And let me tell you... it's been LIFE CHANGING. This little girl has literally changed our lives and for the better. And if she didn't have TSC (Tuberous Sclerosis Complex, her genetic disease), epilepsy, autism, and all that comes with it, we would not be where we are today. We wouldn't know the amazing people we have met because of it, we wouldn't have met so many amazingly strong parents and even stronger kids/teens/adults living with epilepsy. We wouldn't look at the world the way we do, or even have the kids we have today because of their special needs sibling.
Did it take us time to get here? Yes. Years. Do we still have moments, days, weeks where those thoughts try to creep back into our minds? Yes. But we don't let them linger for long. Usually because Miss E is doing something silly, or dangerous (she's a daredevil with no sense of danger), or down right miraculous that we just simply let them float away. Her accomplishments are that much sweeter, that much more meaningful. The little things we worried about prior to her don't even matter anymore. And we can be that much more present in life. Now, PLEASE understand that I FULLY understand that there are families out there who's children are not doing as well. I know that. And it hurts me to the core. I'm simply trying to convey that I'm here. That there are those out there that do honestly know how you are feeling. That you are not alone. Your fight is not yours alone. We fight with you. For awareness, better treatments, and someday willing a cure. Until then, ask for help if you need it, take 5 mins to breath if it's too hard. You will make it through, somehow we just do, even when it feels completely impossible.
I send out positive thoughts and love to everyone touched by epilepsy. I hope through this site and blog you can take some hope and we can make you smile even just for a moment. 💜
-Lisa
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