Monday, January 24, 2011

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. 


whitney said...

i think you're doing awesome. everyone needs things to make them sane in their lives. you know what's best for leah and for you. and it sounds like you've figured out that its not living and breathing rhett syndrome 24/7. just keep doing what you're doing... i bet my life that heavenly father is very pleased with you, maren.

JourneyBeyondSurvival said...

I personally need to write. I have to get on my treadmill.

I've tried to be 100% for Chickadee. But, I have had a really hard time this year during regressions. If I'm fighting this thing with everything I've got, I don't have anything left when I lose.

Regression isn't her fault or mine. Nothing I can do can prevent it. I just need to preserve a piece of myself so that I'm not lost when more pieces are gone from her.

Dawn said...

cute pic! I'm with you, I have to be part of the person that I was before Rett took a grip on my life or I feel like I am going to hyperventilate. My goal for 2011 is to find my way back to the part of me that I lost last year, look for a happy balance between being myself and being Reagan's everything...I *think* it's possible!

Maquel said...

I hear you. I think it would be impossible for anyone with a special needs child to not feel guilty. But you are doing your best. Something that always gives me comfort when I have those guilty feeling days is to remember that Heavenly Father chose you to be the mother of one of His elect. Sometimes, when I'm having a bad moment, that thought just makes me angry, but usually it helps me.

Jen said...

I think your entitled to be part of yourself too. . . Our RS lesson yesterday was on Pres. Uchtdorf's talk about what matters most. I like that he stated that we have four relationships in life and all of them need to be cultivated; one of them is yourself!

ed and kelli said...

here is my suggestion. You + Leah {+ ryan if he really wants to} jump on a plane, come to AZ and play with your favorite little sister. Spend some time with your not-so-secret-crush.. get some ugly dance time in. play with your sister. let your sister have some leah's aunt time.. even let your sister help give you a break and let HER be 100% rett aunt for a few days {i'm willing to do it more.. just don't think you wanna be in douglas that long :) } Sound like a good suggestion? Cause i'm sure my kids would like you better... it's be a great change from seeing their grumpy pants mom all day long:)

Jennie said...

I think all moms of "special" kids feel this way at one time or another. I know I related with everything you said.

For me, it has been seasons. One season I will feel the need to be completely immersed and other seasons I feel the need to reach out more to my "jen" side. Sometimes, Jackson's needs dictate my actions.

I think that is part of the ride called, life. Nothing stays the same and we are always bending and stretching and learning from our circumstances.

Sometimes I feel judged by others. I'm sure that isn't the case. They are only trying to be supportive. But still.... I just have to remember that this is my "thing" where I have to learn and grow. Others will have their "thing / challenge". Everyone does things differently and we all have to do what works for us and for our families. No one can know or judge my choices or our life until they have walked in my shoes. Only you can decide what is a good balance.

Just from reading your blog, I can tell you are fully engaged and an on top of it "special" mom. You are doing great!

Each moment is for a purpose. Some days I just endure (hopefully with a smile) and other days I'm fully enjoying the journey.

My best to you!

Shannon said...

I'll pass on some advice (and tailor it) that I heard just this past's from someone we both know and love and it gave me hope: Heavenly Father loves Leah and you to pieces--PIECES--and He will NOT let you fail. Not gonna happen. You try your guts out, and even when you feel guilty, you have done what you need to do. You are yourself, and even when you feel you taken too much time just being Maren, you have done what you need to do. Because you do it with all of your heart, it is enough...always, always, always.

So I say be every single person you are. Be Maren, be Leah's mom, be a Rhett mom, etc. There are so many parts inside of one are so much more aware of your roles than the average bear, which means you're already millions of miles ahead of most of us. Every single part that I have seen of you I have admired...and all of those pieces are building you into one amazing and well-rounded and compassionate and full-of-life woman.

Mary said...

I'm thinking a girl's night out is in order. Ü

Colleen said...

The first day of culinary school the chef instructor stood in front of our class and explained that cooking was the persuit of perfection when perfection is 100% unattainable, yeah and I signed up for that on purpose, I am just designed that way, I know I am silly. I think Rett is the same way. I have been on the fence, is it broken or not? I think I am doing it all, but maybe...all this to say, good for you for having a remnant, for being the Maren you are outside of Rett. Either way you slice it 50/50, 80/20, you are exactly who you were created to be, go with that :-)

katie j said...

hi maren, i never comment on blogs - i mean never. i usually just lurk behind the scenes and check out what my friends are up to. :) mainly just looking at pictures... but i read your post and found it so profound. i apreciate your honesty and real-ness. i am blown away by what you go throguh on a daily basis, and i know i don't know a fraction of it. hang in there.
i'm really glad we are friends. i think you're awesome. 100% awesome :)
love you

Jenny said...

I just wrote something about this myself...I feel so caught between worlds sometimes. Lately, I've felt bad for Callie that I'm been so Micro Mom and nothing else. Poor girl. But one can only do so much. And I think I've pretty much decided that if this is what Heavenly Father's giving me, then He knew I'd have a hard time balancing things and He was ok with that.:) I mean, not that I'm not trying to be better, but give a mom a break here. Ya know? Good for those 100% rett moms and micro moms and all them lovely ladies. We need those moms who advocate 100% of the time. We NEED them. I've learned that I'm a great supporter. We need those too, right? I don't mean to take this lightly at all, but I have either been comforted -- or just plain out decided maybe that my efforts are good enough. I'm rambling. I'm tired. You're great. AND, I love what you emailed me and I'm so behind on stuff....I'll be in touch. LOVE what you sent. LOVE it!

Porters said...

I know that I can't relate on the terms of what you go through with Leah. But I do know that when I start to get completely fanatical or obsessed with one aspect of life (no matter how important) it starts to fall apart. I think we all need to have our times when we take a break from being what we need to be. I think it is okay to let ourselves be 'selfish' though I am not sure it is quite that. So I think you are doing a good job, I know I don't even know a tenth of what you do, but I can see your mantaining balance and doing your best for Leah- you need time for yourself too. :)