Hi, I’m Ailbe.
I’m four and a half years old but I’m cognitively delayed due to having Infantile Spasms for two years beginning when I was 18 months old. I’m an epileptic for life.
My family believed in me from the beginning and chose to not read the horror stories online or focus on the “statistics” of my condition. My mama didn’t cry when they told her I had IS. She didn’t have time. All of her focus would be put towards fighting my condition. My mama organized all my medication deliveries, had constant battles with insurance companies, planned and scheduled all my therapies and juggled how our family would pay the long bills for my hospital stays and medications.
The doctors told my family that I would have very little chance of survival from the beginning and I proved them wrong. My parents took me to many doctors and I began to develop a severe fear of hospitals and anyone who looked like they worked in one (even when they didn’t). One neurosurgeon told my mama that “I didn’t know who she was, that I didn’t know I was in the room with them, that I didn’t know I was human and what was life if we didn’t know we were living it.” Mama cried when he said these words and I wanted to tell her that he was wrong and that I knew she was my mama and loved her very much.
Spasms made me cry. Each one I had, hurt me. I felt confused and didn’t understand why they happened to me. I had them mostly when I was tired. Often I would have over 50 spasms a day and as many as 100 at some points. I was very scared, I felt trapped in a box that I couldn’t escape from. When I felt spasms coming on I would wince and whine to let my parents know they were starting, some times I would go see my daddy and have him pick me up. I felt better when I was held. I was always scared wondering why. This happened for a few months, then they went away for a few months, and then, came back. The second time they came back they stayed for a much longer time and I was really sad. Finally, they left after trying so many things. My parents tried to trick me into taking pills that were the size of some of my toys and they even tried to trick me with puddings. I felt bad for them and I pretended I didn’t know there was medicine in my apple juice or a pill in my gummy bear and I just did what they said. They love me and I wanted to make something easier for them. One time my mama made these really weird meals for me. They were tiny and they had way too much butter and oil. I felt badly for mama because she tried so hard, so I ate the meals. Thank goodness I snuck a whole apple one day and from then on my mama seemed to give me a little more yummy food each day. Now I can eat whatever I want! I don’t have to be the kid at school that everyone’s scared to make sick.
When I turned 4 my mama decided it was safe to tell others I had been seizure free for over a year. She was petrified to share this news because she’s convinced that speaking about spasms will make them return. My family doesn’t speak about IS often because it’s very hard for them to relive what I went through. The weird taste isn’t in my apple juice anymore and I finally just drink plain drinks with no powder in them. I do still have to swallow those gross little white pills “hidden” in my gummies five times a day!
I’m trying really hard to talk. I’ve got almost 500 words now but my school still tells mummy that they don’t hear me speak and this makes her sad. I often see mama cry and I want to tell her it will be okay. It’s hard for me to find the right words so I usually just smack her in the face or bite her. It’s my way of telling her to toughen up and to keep going because that’s the only choice we have! Sometimes I calm down and snuggle mama for a few minutes because I know this makes her happy. I hear her talking to someone called God every night. She’s telling him the same thing each time we go to bed. She thanks him for giving me to her, for keeping me safe and for “healing” my brain. I wonder why she does this? I usually fall asleep as she does.
I like to play with my friends. They seem to really like coming over to my house. My mama has so many fun things in our yard and in our house for all my friends and I to play with. I try to be kind and careful with my friends. Sometimes I get excited and I hug or kiss them. I’m learning that everyone isn’t a hugger. I don’t understand why not, but I know everyone has their own likings. Mama tells me to give people their space but then she whispers in my ear that she loves my hugs and kisses! Sometimes I am confused by my friends. Why do they say “No Ailbe” so much, or yell at me for touching one of my own toys? I don’t understand but really wish they would take the time to explain to me. Maybe as I get older my friends will help me learn how to survive in a social environment but also enjoy my playdates. The other day I tried to run to Will’s house and my mama was not angry at all. She told me she thought it was incredible I knew how to get there. I love seeing my mum’s eyes light up when I do something new or when her friends compliment me.
My favorite things to do are swim, visit the beach, eat chocolate and watch chipmunks with Isla bug. I loooooovvvvveeee my little sister Buggy. She is so kind to me and she’s really been a good sport about all the biting. I mean who can resist those deliciously chunky thighs 🙂
If I could have one wish at this point in time I would wish to be included always. I want to be wanted and not tolerated. I want to be believed in and not worried for. I want to be treated fairly and not restricted. I want to be loved wholeheartedly for who I am and not what I should be.
I’m proud of myself. I’ve worked incredibly hard to be where I am right now. Thank you for always being on my team I am forever grateful for you.
Just keep swimming,