split life

i have a dilemma:

part of me is normal. part of me is not.

i'm half mom, half rett-mom. i'm half maren, half rett-maren. half wife, half rett-wife. and sometimes, it's not half. the ratio isn't always exactly even. and i'm torn. i'm being pulled on both ends and i'm afraid i'm just going to snap like a wishbone {kind of like this super cool picture of me at my wedding being "torn" between my ry and my step-dad. funny, no?}

that's my dilemma.

of course, the ideal outcome would be to rid myself of rett syndrome. find a cure and get my little leah back. {i know, i've learned a lot and people are better off to have had leah in their lives and, and, and...but let's just forget that today because really, rett syndrome just stinks.} but finding a complete cure is not likely to happen anytime soon. so, i have to figure out how much of me should be regular old mom and how much should be rett-mom. or wife. or maren.

i'm happy to immerse myself in all things rett. i'll advocate and research and fundraise. i'll take her to neurologists and cardiologists and phlebotomists and therapists. i'll work and work and work to get her to realize the power that is her eye gaze. i'll cut out and laminate hundreds of food cards so she'll simply have a choice. i'll hold her hand as we roller skate all around the neighborhood. i'll be uplifted by friends i've made who have found themselves in a similar position in life. i'll do it. and i'll do my best to not complain.

but...i'm also maren. i have friends who have nothing to do with rett syndrome. i have family members who have kids doing very normal things. i have a desire to have more kids of my own who will hopefully have a voice and able hands. kids who can regulate their breathing and their body temperature and their ability to communicate and the muscle tone in their body. that's my hope. and even if it doesn't happen, even if leah is my one chance, i just can't be all rett.

it's probably selfish. i'm sure it is. i have multiple friends who are all rett. it is their life. their passion. they have dedicated their lives to fundraising for a cure, advocating for their girls and spreading awareness to the world. they work for rett syndrome organizations. it is on their mind all. the. time. and it works for them.

but that doesn't work for me. like i said, it's probably selfish. but regular old maren is still inside of me. she comes out every once in awhile, but then i feel guilty. guilty that i'm not trying hard enough for leah. i'm not doing this therapy or that technique. i don't have this gadget or that gizmo. i haven't hired a professional advocate - i do most of it myself. and i don't know it all. {shocker, i know. my 17-year-old self cannot believe what 29-year-old maren just admitted.}

but then leah has a great week. or i find that helping her learn to swim last summer was better than any water therapy i could have paid for. or taking the switch to santa was apparently a great idea, and i thought of that myself. so maybe i am doing okay. maybe i am being enough for leah. i'm giving her what she needs. i'm doing my best.

maybe i can be both. i can't be 100% rett maren and 100% regular maren, at least not at the same time. but i can be a bit of both. some days it might be 50/50. some days the scale wil tilt, the rett monster will overpower and i'll have to shed some normalcy. but other days, maybe, just maybe, i can be a little more maren. normal maren. regular old maren from the block. hehe. just leah's mom. not maren-mom-of-leah-who-has-rett-syndrome.

and maybe, on those "just leah's mom" days i won't feel guilty. i can remember i'm doing my best. i can remember it's okay to be a regular mom mom every once in awhile. just have to figure out how to balance out my dilemma.

and yes, i'm open to suggestions.