18 April 2013

mama memoirs: truth

here's the truth: the majority of each day, i am happy & stay positive with the curve ball life has thrown us in ruby's diagnosis and all that goes with it.

but this is also the truth: at least once a week, i find myself day dreaming of the time before we were even worried about ruby & what might be slowing her down from walking. the days where i stressed over how much (ahem, how little) sleep she was getting (and giving me). the days when i worried about if she was nursing okay & getting enough to eat. i even longed for the days when i first went back to work, even though i was sick to my stomach thinking of ruby being without me & not knowing her caregivers.

all of those days seem like a walk in the park compared to the worry that now interjects itself into my mind on the regular. i know that i am not running the show, so to speak. i am not in control. and i am accepting of this fact now. but although i've accepted this, there are still moments when i am angry. and afraid. and unsure. and lost.

angry that ruby has to face this path. angry that she was that one in four chance of being affected. angry that i wasn't born affected instead. since i'm a carrier, that means that my parents could both be too (although not necessarily), they had 4 children together & none of us are affected with sma. and neither is anyone else in our family. why ruby? why? why? mother freaking why??

i'm afraid of losing her. afraid of her being made fun of by her peers. afraid of her being left out or excluded. afraid of not making the absolute best decisions for her to live the best life possible.

i'm unsure of how the hell to know what to do next? try the drugs that have been researched for sma? get her a wheelchair? self propelled or power? focus on using the walker? just let her crawl? unsure of how to keep her at the same physical level as her peers & for her to be taken seriously (and to be as valued as everyone else.)

and i'm lost. i want more children. it's a constant ache. but the options for doing so seem impossible. T & i have different feelings on what is best & it doesn't feel like any decision is the right one for both of us. and this isn't a decision you can just sit down and hash out through a list of pros and cons. adding to a family should be a decision that feels right & not one that either parent should need to be persuaded to agree to. it feels like being tossed around in an ocean. you know that there is land in any direction you go, but which way to go? which will be the quickest? least painful? i assume that at some point, we will find our way to safety and to a decision that feels right and that we agree is best for our whole family. we just aren't there yet and some moments it feels quite unsettling.

so, it's not hard to understand why i find myself dreaming of the days before SMA. for just one brief moment when the possibilities for ruby's life were just as i imagined them.

in the next second, though, i know without a doubt, that although ruby's life won't be filled with exactly the same possibilities that i imagined for her, it is still a life full of possibility. different experiences and triumphs than i have ever had. i understand now why the pain of ruby's diagnosis lingers in ways that i hadn't thought it would before. it's because so many of my dreams for ruby include her experiencing the same things i did in life and sharing those with her. but now, i don't know what ruby's life holds for her. i am traveling a brand new path in life and she's leading the way. it is both inspiring and terrifying.

and that is the truth. it's like that quote from the perks of being a wallflower -

“so, this is my life. and i want you to know that i am both happy and sad and i'm still trying to figure out how that could be.”


becoming a mom has sent me on an incredible roller coaster of fear and freedom, sacrifice and commitment, love and complete fulfillment. i am being molded into the person i was meant to be. and i have one (little, perfect, fantastic) person to thank for that.

*linking up with mandy over at a sorta fairytale blog for her new "mama memoirs" bi-weekly link up! feel free to head over there and join in on the fun!


  1. My husband and I were just talking the other night about how as each new change comes we look back and reminisce about how "easy" life had been before. Yet with each new responsibility we manage to make it a normal part of life.

    Ruby is lucky to have a mama as caring and diligent as you, you will give her a good life.

    1. thank you, kiara! I often think about that, too. all the seems like a lot to accomplish when we are at the start, then all of the sudden we are in the midst of a challenge, & then we've done it! you're right that it had become our "new normal" & we will roll with it. thank you for the encouragement! :)

  2. I agree with Kiara. I am confident that things will fall into place, and your new "normal" whatever that might be, will just make you stronger. Your little girl is so blessed to have you! Thank you for opening up and being so honest. And thank you for linking up!

    1. thanks, mandy! I'm looking forward to the "mama memoirs" to come. it's a great outlet for us all. & a great way to connect many other supportive mamas. :) thanks for hosting it!

  3. Hey sweet sister. ( ) holding space for you, and saying, "Amen!" & "Wow." & "There she is. Look at her go."

    Love you. Hugs all around.


    1. crying now. per the usual when I read your comments. love you too, sistah. (also, my phone just tried to auto correct "sistah" to "diesel". I don't know why, but it makes me giggle. (giggle, phone, NOT google! sheesh.)