25 April 2013

on the move

last saturday, ruby & i met up with ruby's physical therapist, who's name is LISA, NOT LORI. ;) she is such a fantastic therapist & even more, she's a wonderful & supportive person. she told me about this warehouse that accepts donations of various adaptive equipment that families can check out FOR FREE. the inventory is hit or miss, depending on what's been donated, but man, did we hit the mother load!! we got three items - everything we were looking for! more on the details later but for now, check out ruby's first time in a chair. it's not a traditional wheelchair, (which is good bc that's not really what she needs right now, not yet anyway), but it fits her perfectly! when she got in it, you should have seen the look on her face! she was so proud! it's been a hard thing to face - seeing ruby need actual equipment like this. but seeing her figure it out & start cruising along, made me forget about all my anxieties about it. my only emotion was pride for our beautiful little lady! check her out!

19 April 2013

the perfect end to a crazy week

T went to the brewers game tonight so ruby & i had a mama-daughter date night. it was such a happy evening (save for one serious goose egg at the end. whoops.)

we ate pasta at rocky rococo's & ruby acted like her usual goofy self. then she danced & entertained herself through store after store while i tried to find something cute & cheap (not an easy task!) for my agency's annual fundraiser tomorrow evening. i am including the pictures below of us in the dressing room not to show you the jacket options (I picked the pink one with some vote-by-text assistance from my sister, lisa, for the record) but to share ruby's antics in keeping herself occupied. she can get herself into all sorts of different positions while still strapped into her stroller. goof!

it was such an enjoyable evening together. even more than it usually is, which is saying something. it did end with a bang, so to speak, when ruby slipped coming off her bed & slammed head first into the hardwood floor. eek! we iced it for about 15 mins (still can't believe she let me keep the ice on for that long!) and she was back to her giggly self. just with the addition of a huge bump on her head.)

just love our sunshine girl.

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!

05 April 2013

what's the latest?

so, i feel like updates are in order. it's been busy around here lately & I've not had the time to blog like I have been lately. (and pardon the bullets but it's the easiest way to get everything out this time.)

• biggest new around here is that we are in full packing/painting/moving mode. it was very sad when our landlord passed away last august. our new landlord is very nice but plans to move into our side of the townhouse & rent out the other side to someone he knows. so, we found a really cute, lower flat just one block away from our place now. no stairs, which is good for ruby, and all hardwood floors, which is also good for her walker ("wheels", as we call them.) we move in officially next weekend but our new landlord has given us the keys and we've been painting and moving things in a little at a time, which is a huge help bc moving with a two year old is not the easiest thing ever. looking forward to getting in and getting settled.(and decorating!) i'm in full-on purge mode, boxing up ruby's toys & baby stuff she's too big for now (this does make me tear up AT ALL) & storing it in the basement. tomorrow i'm going through my clothes & the kitchen & boxing up things to donate to goodwill. it's kinda like spring cleaning & it feels good!

• on a note-so-good note, we had to put one of our cats, Peyton, to sleep last weekend. Saturday morning, I woke up to him crying in pain & listless. took him to the ER vet, who confirmed he had a bladder blockage. she explained the process for fixing it (although it wouldn't be a for-sure fix). it was a horrible decision to make & it was all very sudden. I think the hardest part was having to explain it to ruby & her saying she "love that cat. I get Peyton, mama. Peyton come home, mama." seriously, like a knife to my heart. thankfully, she's two & rebounded quick. but his brother, eli, not so much. she's been sad, crying downstairs, clearly looking for Peyton. we were originally planning on giving them to the humane society to re-home but then obviously changed our plans when it would have been only eli to go. (they would have been adopted together, only.) so, a friend of mine, who also had to put down one of her cats recently, said her family might be willing to adopt eli. and then our new landlord made the same offer. so, it's been decided that eli will stay with our new landlord (who has two other cats, too), I'm glad that eli won't have to adjust to a new home & I think our landlord will take good care of him. we are sad about Peyton but I think everything else has worked out well for eli. we definitely wanted him to be with other cats bc he's always had Peyton & we don't want him alone now.

• shifting gears, we are continuing our process of determining how we are going to go about having more kids. we met with a geneticist who did some testing for us to confirm our SMA carrier status (approximately 2% of all children born with SMA have only one parent who is a carrier, instead of two. this scenario would greatly reduce the likelihood of having another child with SMA, so it's good to have the carrier status confirmed.) we were also screened for cystic fibrosis carrier, as well as a hemoglobin something-or-other disease that is more common in those with Asian ancestory. both of those results came back negative, so that's a good thing. we are going to be meeting with a fertility clinic that does preimplantation genetic diagnosis along with IVF. at this point, we want to have as much information about all the options as possible before we make a decision. I feel good about that. I'll update should we make any decisions one way or another. I can say that we have made the decision not to try to have another baby naturally& take our chances of having (or not having) an affected child. so, we will move forward from here & see what's in store for us. nothing is easy but it will be worth it.

• we are planning our first trip with ruby to disneyland. eeeek!! happy happy happy! families of sma (fsma) is having their annual conference there this year & we will be going, along with my mom, my sisters lisa & wendy, & their kids. cannot wait! ruby & I have been watching various videos of rides online & squealing in delight. so, so, SO excited. :)

I think that's the latest & greatest around these parts. busy, but all is well & we are loving spring & find beautiful moments in each day. like picking our noses (ruby) & snuggling (us)...