My sweet girl was so energetic and excited today when I got home from work. I spend my days educating 26 six and seven year old children in a variety of subjects and then I come home to be “mummy”. When I arrive home we usually exchange lots of hugs and kisses and then break into some sort of learning skills. Today we read our usual books we love and then we went outside to play. Sweet Ailbe seemed so “there” today and so I asked her to count. Slowly then quickly she started to count:1,2,3,4,5,6,7,8,9,10! A big to-do and then I said, what’s next Ailbe. She went on and said “11,12,13,14,15,16,17,18,19, 20! I literally exploded with excitement and then the tears hit. Although she totally mumbled her way through 16 and 17, my I.S. kid just counted to 20. We also never know what the day will hold. When you take a heavy duty medication like Topamax you can feel a variety of ways (quick to react, emotional, tired, sluggish). Some adults on this medication have said that they often lose words mid sentence and can quickly lose their train of thought.
As she was counting, in that moment my heart was so full and my soul so warm, I couldn’t imagine a happier moment. Life with a serious medical illness is always trying and challenging but, I’ve always said, when it’s your kid, you are often consumed with the worry of “what might be”. To say I am sometimes consumed is an understatement. Some days I am feeling great and positive about what Ailbe is doing and what she may continue to do. Other days, I am swallowed up by the dark monster of fear. The fear that cripples you, literally, you can’t move for worry. A fear that I still to this day, don’t wish on another soul.
Not today though. Today I got to hear my daughter count to 20 and I got to hear her sing the ABC song. My hero is five.