26 May 2013

ruby rules!

last weekend, we had a fundraiser for ruby. it was a smashing success, which we are incredibly thankful for, but what i am even more thankful for is the feeling of connectedness & community that came from it. 

the original idea for the fundraiser came from ruby's first favorite teacher at daycare, ms misty. misty has been ruby's "daycare mom" since she was just three months old. she held, rocked, & carried ruby through hours of crying (ruby had a tad bit of trouble adjusting to daycare) & ruby was attached at her hip for much of the daytime hours of her first nine months of her life. she has always been a kind & supportive person to me, but the lengths that she & several other people from the daycare (and some not even) went to for ruby left me (and T) speechless. (and brought me to tears. of course.) 

the fundraiser consisted of a car wash, a raffle, & a plant sale, as well as a Wildtree party that a friend of mind held. it was a lot of planning & hoping & preparing so that the event would go well & it certainly surpassed all of our expectations. 

what i loved the most about the day, though, was meeting people & telling them about ruby. it was the first time that i had told her story to strangers & done it so many times, over & over. it became somewhat therapeutic for me. to say the words out loud & then to repeatedly have strangers genuinely wish us well & tell me they'd be praying for us was overwhelming at times. many people went home & got their other cars to bring back again for another wash. i met nurses & doctors, who knew what SMA were & were truly empathetic. i met people who have family or friends who suffer from other forms of muscular dystrophy, one man who suffered from French polio when he was a senior in high school. although it is a different ailment, he showed me the scar from his trach & the braces he still wears on his legs & ankles. we talked for a while about how these sorts of experiences have a way of putting things into perspective in life. i met a man who works for channel 12 news & said that the next time we do an event to call him & he'd have them plug it on the news. 
friends from work showed up. some i expected, while others i did not & it still chokes me up thinking about them taking time out of their day & supporting ruby. a friend who I haven't seen in at least 5 years came with her beautiful daughter. she bought a couple raffle tickets but more than that, she was THERE. another friend washed cars with us all day. and my RA from college, who i haven't seen in TEN years, showed up, with her girlfriend's son & they spent their entire day washing cars. a family from the daycare had made a donation earlier in the week & still made it a point to come get his car washed. family & friends who couldn't make it the day of the event, sent donations for ruby. and of course, the teachers & staff from the daycare came out in full force. they got sunburns & sold raffle tickets. they brought their kids to wash cars & hold signs. one woman, while she is in the midst of dealing with horrible sickness within her own family, came AND bought pizza for everyone who volunteering. ms misty spent the entire day playing with ruby & introducing her to people who came through. they flagged down cars (and almost got hit by a couple! they took their job very seriously.) everyone was on their feet from the time we started until the time we left. 

i still just don't have the right words for how grateful i am for the support we have. to see people not only emotionally support us but to actually walk the talk & DO something for ruby was humbling & overwhelming. still, i just can't believe it. i have spent so much time saying thank you but i know that i will never be able to truly express our gratitude. 

16 May 2013

mama memoirs: more milestones

ruby had her first field trip this week. if you are friends with me on facebook, you've already heard me talk a bit about it. 

I know it probably seems silly to many people. others who have kids already and are used to their kid(s) going on field trips and doing other equally independent, grown-up-kid things, or others who don't have kids and don't see the big deal in a kid getting on a bus, along with a bunch of adults, and going to the park. and to be honest, i didn't see the big deal either. but it turned out to be a big deal to me. 

i was pretty excited for ruby to go & anxious to hear all about it after they got back. i dropped her off with her teachers and said goodbye. ms brandie had asked me if I wanted her to call me with an update when they got back and I said "no, I'll be fine. I'll check in when I pick her up." I was trying to be all chill about it. it was comical, I'm sure, because many of you know that when it comes to mothering, I do a pretty superb job of freaking-the-freak out, but not so much of the be-chill attitude. 

so i left her room & went to check her in on the computer when i noticed the big yellow school bus pulling up. surely they weren't riding in an actual school bus. like, without seat belts or car seats? maybe if ruby was as strong as other kids, I wouldn't have noticed but, I quickly doubled back to her room to ask ms brandie to make sure someone sat next to her, in case she was having trouble holding herself up around corners and such. brandie did a great job of reassuring me and i left (again. sort of). 

when i got to me car, i just couldn't move it. i sat in the driver's seat and watched groups of kids come out with their teachers and pile on the buses until i recognized kids from ruby's room. towards the end of the line, i saw ms tiarra come out the door with ruby in her arms and board the bus. another teacher was counting heads and you could clearly feel how excited the kids were, bounding on to the bus, laughing and screaming. it was just exactly how i remember "field trip days" as a child. so much excitement. 

and suddenly, it hit me that that is ruby now - a kid going on a field trip. just like I did. a part of me worries a bit more than I might if she didn't have SMA, just bc I want to be with her and be able to deflect questions and judgements from people who may wonder why she's crawling when everyone else is running around. but mostly, i was crying just because it hit me how fast she's growing up. it's cliche. but that's why it's true. 

mr john mayer nailed it (as usual) when he sang about wanting to "stop this train. i want to get off and go home again. i can't take the speed it's moving in." good grief, how i want the train to come to a screeching halt sometimes. even if just for a few seconds longer to love on ruby just as she is. before the future comes, bringing god only knows what. but we can't stop it. and it continues to serve as another remind to appreciate the now. 

*linking up with mandy over at a sorta fairy tale blog for her bi-weekly "mama memoirs" link up!

14 May 2013

wordless-ish wednesday: just right

i had such a wonderful mother's day, filled with many of my favorite things. i am working on a post about our day & what we did, but i wanted to share this sweet picture of little ms. sun, down at the beach. 

06 May 2013

dear ruby

at the end of each day, we snuggle into your bed and read a book. as soon as i say "the end", you turn your head into my shoulder and close your eyes. you're almost ready to go to sleep but mostly you just do this to be closer to me. i always whisper "i love you, ruby" and you say "love you, mama" right back. and if i say "you're my sweet girl", you nod your head at me. then you snuggle up next to me and i stay with you until you fall asleep. this has been our routine since you were a little bitty baby. i have never for a second regretted rocking you to sleep or laying next to you as you drift off because these moments, the ones we both end our days with, are the most beautiful, most valued moments to me. thank you, my sweet girl, for making me a "mama". you bring more light to my life than i ever thought possible and always wrap my day up in a perfect bow.

sleep tight, little one.

02 May 2013

mama memoirs: ruby right now

two is such a fun age. (well, mostly. it has its moments of sheer madness, too.)

one new skill ruby developed is singing songs. she's always liked songs sung to her, like most kids, but lately, she's been singing "happy birthday" to everyone. (especially her cousin, hannah.) she is straight-up OBSESSED with that depressing song cowgirl jessie's sings from toy story 2 & asks me to sing it over & over again to her. but it wasn't until a couple weeks ago that she started singing along with me. of course, it killed me with cuteness. you just try not melting into a puddle when ruby sings "iiiiiii will alwaaaaaays loooove yoooouuu!" in the backseat. it's pretty much impossible.
it's also so wonderful to hear her singing because we grew up singing with my mom a lot in my family & so to carry that on with ruby feels fantastic.

i guess the other part of ruby that's so fun right now is her budding sense of humor & ability to have a give & take kind of a conversation. tonight, she asked to wear a "jacket" that she'd been playing with. it was really her 6-9 month snow suit. I shoved her in it & it was so tight that she couldn't straighten her legs! we were laughing so hard! then she says to me "show dad!!" so, off we went to give dad a good giggle, too. (we were successful.) ;)
and also? she's currently snuggled up with the snowsuit bc she threw a crazy fit when i said we should put it away & i chose not to fight that battle. go ahead, kid, sleep with your snowsuit.

so that's ruby right now. singing songs & sleeping with winter clothing. :)

(***linking up with mandy over at asortafairytaleblog.com. head on over there to join in on the fun!)