Wednesday, October 13, 2010

no. 13: two-faced

dear little leah, 

i feel two-faced. like i have two lives. two ways that i respond to who you are and what your future looks like. two ways to deal with your struggles. two ways to see YOU. 

i read two different posts today from two different mothers who also have girls with rett syndrome. they were both completely different in how they feel about this disease - and both resonated strongly inside me. 

the first one i read was kind of a downer. and believe you me, i've had those days and i've written about them. it's kind of therapeutic, actually, to get those bad days off my chest like that. this particular mother was just having a hard time realizing that this is what her life  - her daughter's life - would look like for the rest of their lives! the doctor's visits, the therapies, the feeding, the diapering, the seizures, the mouthing, the breathing {or lack thereof}, the sleeping {or lack thereof}, the falling, the unstable walking or not walking at all...and on and on and on. i have these same moments, leah. i wonder why it all has to happen this way. why you have to struggle so much and why i was picked to help you through it. i can think of more than a handful of people who would do a better job than me without even trying. 

and then i read another post. this mother's daughter is a little bit older than you - about 10 years older. and this mother was so uplifting. she has never wondered what her life could be like. she just lives her life. she loves her daughter and everything about her and never questions or asks why or wants things any differently than the way they are now. i have these moments, too, leah. i love you just the way you are. you've taught me so much by being you - things i know i never would have learned had you been just like every other three year old on the block. i've loved every {silent} moment and the fact that i kind of have to take time to do things with you because if i didn't, you wouldn't ever get to do them. i've enjoyed the small things - things i definitely wouldn't have thought to enjoy otherwise.

after reading both posts, i decided i'm just two-faced. i'm not one extreme or the other. i have "why me" days and i have "i-wouldn't-have-it-any-other-way" days. i have "i love you days" and i have "if-rett-syndrome-rears-its-ugly-head-one-more-time-today..." days. 

i do love you just the way you are. i can't say i wouldn't change it, though. i still dream for a brighter future for you - one in which you can express yourself and communicate as i know you wish you could. one in which you can be an active participant not just a stationary bystander. one in which you aren't restricted by what your body can or cannot do or what other people think you can or cannot do. 

but for now, i love you for who you are today. to the moon and back. 

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