brett & jacob
brett and jacob,
january 16, 2012 will be day that essentially has changed how you view your disease. tonight you realized exactly what having muscular dystrophy means. your mom and dad have always been up front with you about what having duchenne muscular dystrophy means- tight muscles, falling down often, scooters, and eventually needing a powered wheelchair when your legs no longer support you walking. but my dear boys, it wasn’t until now that you really understood that along with the difficulties duchenne’s causes, your life expectancy is much shorter.
life expectancy. sure, you have always been able to rattle off the average life expectancy of someone with duchenne’s but until tonight- you didn’t realize what that means. early 20’s. when i think of all the things i am doing now, it hits me that you most likely won’t get to see your 25th birthday. and my heart aches.
but sweet boys, i have faith in you. you each have a strength about you that will carry you through. and i promise to make the years that you have the best ever. i will be there for each of your firsts. for the first time you almost give your mom a heart attack (well, each new time- because when i took y’all skateboarding i think that almost did her in). for your first girl friend. your first high school dance. i promise to make these years memorable.
and when the day comes when you are no longer here, i promise that you will live on in me. two stars will be added and i will smile when i look to the sky. you are my angels. and you have my heart.
i love you.