I know lots of other parents that compare their children, the curve of their face, the color and curl of their hair, their social differences.. " one that is silly and one so shy.." I never realized that I did this too, but in such a different way. Zoe, my youngest was "much more affected than her big sister Olivia" , Olivia was my " practically typical" child, although both have a diagnosed mitochondrial disease. Until lately that is.. until the last months that have led to the realization that Olivia just isn't as healthy as she used to be, that she can't walk as far as she used to, without some fatigue and that sometimes when she seems sad or overwelmed ...she is just not feeling well, is tired. There are more medicine bottles on the counter and in the fridge- and some of the everyday joy of being her mom has been replaced by worry and sleeplessness. A restlessness and a pressing desire to know what our future may hold.
Each day we learn a little more. We find a different way to happiness, a new way to relax and recharge. Zoe inspires us all everyday , that even with challenges- you can succeed. Just the other day both girls were moved to dance- they began with Olivia leading the beat ,swinging her hips,. Zoe joined in too, doing it her way , tall on her knees rocking back and forth and moving her arms. Because Zoe is unable to stand unassisted, this is how she dances sometimes, with pure joy and excitement , rocking to the music. I watched from across the room and soon they were standing holding hands, dancing together as partners, Olivia holding Zoe's weight as she leaned into her. This was something new, Zoe , quite smart, trusts few to hold her balance like this in an upright position and I had not seen her do this with her sister before, especially moving to the music . I realized in watching them, that they are not only friends and sisters who play dolls and Barbies and Pet Shop together, girls that make each other giggle and fall asleep cuddling and sharing secrets, but they are sisters who get labs together, hold each others hands in comfort, even get sick together, I realized then for the first time , that this disease is just something else they share too.. another common bond.