flashback friday: two day old ruby

flashback friday: march 17, 2014. ruby was two days old. that purple nail polish was on my nails when she was born. I still had my you-look-6-months baby belly & this was our first night home together. she will be 4 in about a week & I just can't believe how long ago it seems & yet it feels like it was just yesterday. I feel like I am a completely different person. when I took this picture, we had no idea that ruby would live her life with sma. the disease was asleep still. it wouldn't show symptoms until over a year later. I often look back & wonder what I possibly could have worried about back then. I was foolish. of course, at the time they were understandable worries & stress about leaving her at day care & whether she was gaining enough weight, etc. but now? well, perspective is a beautiful thing. 

this path that we walk with ruby, and now landon, is very strange at times. it can be sad, of course, but the most difficult parts for me are learning to balance feelings that are so contradictory. 

i hate watching my kids get weaker or struggle. I hate worrying about them getting sick. but I know that sma has taught me the value of health, of true appreciation for what we do have. 

i hate that i have to hear ruby tell me she wishes she could stand so she could give me a hug standing up. but I know that sma has given me so many more opportunities to teach ruby about what really matters in life & how to love all of our differences. 

it's a fine line to walk & just like any parent, I question myself constantly as to whether I'm doing the right thing & wonder why God would think I'm up to the task raising tiny humans. 

but with ruby, there's never any wondering. since the moment she came Earthside, she has made her every intention, thought, & preference clear. she feels everything 100 times over & shares that feeling with everyone by way of a dashing smile, a wicked stare down, or a face full of tears & sobs. she is full of love. she gives it to those she loves, freely & usually in a goofy way. for me, it's with just a look that says more than words ever can. she's the one who made me a mama. when I'm doubting my ability, I'm reminded how much she has taught me, when I let her. no matter the tough-to-learn lessons life brings, she always brings the light in. she's our sunshine girl, after all. and i can't believe she's almost four. 

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!

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!

wordless-ish wednesday: these two

melt my heart on the regular. sheesh. here they go again...

milestones, man. milestones.

it has been a pretty busy few days around here. it started up with ruby turning 2 years old last friday, march 15th. the day flew by, as we were preparing for her big toy story party on saturday & she was also quickly coming down with a nasty cold. since respiratory problems are so prevalent in people diagnosed with SMA, our pediatrician takes any cough ruby has seriously & pretty much treats it right away. so, in addition to running party errands on friday, we also made a quick stop to the doctors office & then the pharmacy to pick up antibiotics before heading to T's sister's & fiancé's apartment building to set up for the par-tay. it was so helpful to be able to set up the party decorations, at least partly, the night before the party.

the party went down on saturday (after yet more errand running, of course!) & it was a great success! it was PACKED. we had around 40 people at the party, including about 12 kids from babies through elementary school. many of our close friends came & it was fantastic to see so many people who love ruby come out to celebrate. it was a quick & crazy party. some of the pictures i have aren't the best because the apartment was so bright (& beautiful!) & I didn't edit them, so hopefully you can make them out okay. ruby got a TON of gifts & it currently looks like toy story exploded in our living took. we had (delicious!) baskin robbins ice cream crunch cake and some snacky-type food. everything turned out & looked great! and I have to give (many, many) thanks to T, Lu, Lisa, & my mom who helped SO much with setting it all up. and also to several of our friends who lent us tables and chairs so we didn't have to sit (& eat!) on the floor. :) last year, after ruby's rainbow party, i said I'd go easy on the big parties in the coming years, but i just don't see that happening anymore. i love planning them & it's a wonderful excuse to celebrate ruby & all she brings to our lives.

ruby also had her two year check up on monday. it went great & she barely cried. yay! she is still on her usual growth curve (10% for weight, 25% for height). no shots either, which was fantastic! basically, it was just a check-in & all is well. the biggest change is she can ride front-facing in her car seat now & use toothpaste with fluoride. like I said, nothing too crazy. but after the last few months we've had, no news is good news for us.

and lastly, ruby moved on up to the next classroom at daycare - the early preschool classroom. I was a little nervous but made sure to put on a happy, positive face for ruby. and she did great! no tears when i dropped her off & when i called to check on her in the afternoon, her teacher said she was having no problems with the transition & she's enjoying getting to know ruby.

so, lots of stuff going on & all of it GOOD. and we like good news. here are some pictures i took the last few days of all the fun we've had.

growing girl: a ruby update

so, i stopped doing ruby's monthly updates at 18 months. a year and a half seemed like a good round number & i was going through a bit of a rough patch with ruby's difficulty walking, so it all kinda worked out when i had taken a break from blogging.

but i do still want to give updates on the little chica, since a big part of this blog is to be a memory book, of sorts, for her to read when she's older.

so, here goes.

ruby is just about 22 months old (next week). (i wonder when i'll stop saying how many months she is and just stick with years?) anyway, she is full of personality, as most kids her age are. she's got lots to say. and some if it we even understand! :) so, that's a plus. she is saying some three word sentences, like "milk please, mama!"
or "sit down, dad!" it's pretty much a small miracle to actually be able to talk to her since so much of her life i've spent guessing what exactly it is she wanted.

ruby has really grown attached to other people besides T & i, which is fun to watch her do. she has her favorite teachers at daycare and talks about them often. she also talks about her family on both sides. that's especially exciting. when her aunties rhonda & candice are around, she wants nothing to do with T or i, which is actually a nice break for us. she's even started calling my moms by their names, which is pretty funny. you'll hear "margie? wella? (della)" when she's looking at pictures. it's sweet.

she's really into pretend play. we got her a pretend kitchen for christmas and it is so cool. she likes it, too. each night before bed, she usually tells T to "sit down!" and then proceeds to whip him up something with her spoon and bowls she has to play with. and she still likes putting buzz, woody, jesse, and elmo to sleep by laying them on the floor, covering them with a blanket, and patting their backs. it doesn't kill me with adorable-ness or anything. ;)

i've already updated recently on her walking. tonight i held her hand and had her walk up the sidewalk in front of our house and she actually did great! it didn't feel like she was pulling on my hand as much as it usually does. she seemed much more steady and a little less dependent on me. and she was moving quicker. so that's great. people with special needs will often refer to their kids reaching "inch-stones" instead of milestones bc progress can move so slowly, so it definitely feels like she's passing some inch-stones. and that feels fantastic. we have her neurology appointment in a couple weeks so i'll update after that, too.

and lastly, here is a rundown of some of ruby's favorite things:
• toy story, nemo, cars, elmo, sid the science kid
• coloring/drawing/using permanent marker on things that one should never use permanent marker on
• giving kisses, saying goodbye to people, especially T and i if we leave in the morning. (i recently heard "have fun, mama!!")
• peanut butter banana smoothies
• pizza
• rice
• reading books, especially one about tubby time
• oh, and speaking of, she still loves tubby time.

that's pretty much ruby in a nutshell right now. and here are some random pics of her in the last week or so. she's learned how to take selfies recently so there's one of those in the bunch, plus just some of my favorite ruby-smiles of late. i've taught her how to "show her teeth" and say "cheese" so we've gotten some funny pics of her lately.

enjoy! and happy hump day!

wordless-ish wednesday: don't get used to this. you're not even 2.

i waited to paint your nails. it was a "girl-y" mom & daughter thing i wanted to do. and you looked so freaking cute. but, also, i tweaked out a bit. like this...

nail polish will not be worn outside the house for several years. you are not allowed to wear make up until junior high & even then it's lip gloss and clear mascara only. no heels until high school. don't even utter the word "stiletto" to me until you're paying your own rent. and you can buy a two-piece swimsuit when you have your acceptance letter to college.

(lastly, i expect you to do all these things behind my back. please keep it to yourself until you're well passed the age of 25 & i am able to see for myself that i had nothing to worry about all these years.)

i love you, little lady.

ps) not so wordless this wednesday, eh? big emphasis on the "ish" today. ;)

17 months

so, i feel like i just posted one of these updates, because well, i did. but no bother, ruby has continued on with this whole growing up thing. sometimes it delights me & other times it makes me tear up. but in either instance, i am still deliriously happy & in love her & our little family.

so, what is 17 month old ruby all about? here's a snapshot:

• she asks to listen to "sid" every time we get in the car. (as in, "sid the science kid" on pbs. we love that little nerd.) her favorite song is "checking out charts". no joke. she dances and hollers in her seat whenever it comes on. it's not cute at all.

• recently obsessed with movies. it's pretty adorable and provides a nice break for us every once in a while, too. current favorite: monsters, inc. (and as an aside, having a kid is like reliving my own childhood everyday. it's like living it all over again, through ruby. it's kind of awesome.)

• recently, she's become a little in love with her blankets. she asks for them at night time & puts one over head while i rock her. it's pretty hilarious. it's such a grown up thing to do - ask for a blanket. *sigh*

• oh, this is new & quite funny. lately, she takes any bottle of soap, water, etc & taps the top of it on the palm of her hand (like she's pouring it out), then she rubs her hands together, or pretends to rub the soap, water, etc all over herself. it's really the first pretend play she's done & it is so strange to see it & realize that, yeah, we have a toddler now, not a baby. *gulp*

• she just went through a growth spurt & suddenly fits in some of her 18 month clothes. yikes!

* still not walking consistently. she takes steps here & there. her pedi said she's not concerned & we will just see where she's at when we take her in for her 18 month check-up.

* did i say she's had her first play date, too? seriously, enough with the growing up, ruby! this is why i have no qualms with rocking ruby to sleep still. does anyone else see how fast she's growing up? before long, she won't want me to hold her or do anything for her. no, ma'am, i will rock my babe as long as she'll let me.

and lastly, here's some sweet shots i got this month. enjoy!

ruby: 14 months

well, ruby turned 14 months old last week & I can officially say that I *love* being a mom of a toddler. the more ruby grows & discovers, the more I love being her mom. she is a blast, constantly doing something new & exploring her world. don't get me wrong, I enjoyed the snuggly, tiny baby phase, but I also feel like this age is one of the most fun. it probably has a lot to do with me working in a toddler room in daycare for five years. I've got loads of songs and games up my sleeves and I don't get frustrated with behavior bc I know what is developmentally going on. honestly, when ruby was a brand new baby, I felt like I spent a lot of time guessing what was wrong when she cried and not knowing exactly what was going on with her sleep/eating/weight gain/insert any other milestone people ask you about. I'm sure the whole "new mom" thing had an effect on that, too, but let's just be honest - our kids get cooler everyday. :)

so, what's new? here are the deets:
• ruby has some stellar fine motor skills. the chick holds writing utensils like you're supposed to. like, the way I didn't learn until 2nd grade & not even then until I practiced with that positioner thing-y the teacher put on my pencils. (am I alone in that? anyone else remember those? actually, very helpful.) anyway, like with everything else she does, I'm impressed.
• ruby signs "more", "all done", & "eat" regularly. I need to teach her more signs bc she likes it & it saves us a lot of tears (both of us) bc I can understand her better. most of the time.
• she moved to her toddler bed officially - like, she has to climb up to her bed now. it's adorable. (ummm, of course it is.)
• still in size 3 diapers & in 12 month or 12 - 18 month clothes, although she still fits into some of her 9 ( and even 6!!) month stuff.
• she still eats pretty much anything. except bananas. not so much a fan of those anymore. strawberries are what's cool now. and oranges. and I think she might physically harm me, if I got in her way of eating ice cream. seriously. she comes by her sweet tooth naturally, though, that's for sure.
• current words: dad, mama, uh oh, bye bye, wow. she understands a ton. will do most things I ask her to do - go find her dad, bring me a book, etc.
• loves: reading books, dancing (with each index finger pointed up in the air), climbing, painting, splashing, anything sensory, and watching sid the science kid on PBS.

ruby rocks. she rules. and is such a sweet girl.

our week in iphone pics: april 23 - april 29, 2012

here i am with my first "week in iphone pics" in a long, long time. i've been meaning to do this, as i always think amy's looks like such fun! check her out and link up to get in on the weekly-camera-phone-fun! and without further ado, here was our week. check us out!



dad took up running last week. so what did we do while he was gone? stuffed our faces with strawberry cake, chocolate frosting and vanilla bean ice cream, of course!

i'm a big kid now. like, i eat waffles in the morning on the way to school. a big kid, like, for reals.

ruby is so funny, i tell ya. one morning last week, we had just gotten up and apparentally,
 she decided she just wasn't quite ready to start the day.
so, this is her throwing in the towel before the day had even begun.
the cat looks a little concerned, no?

oh my goodness. are there even words for this? we took a trip to target and found this hat.
which was way too small but also way awesome.

this girls reads. in her room. in the car. in bed. while watching tv. she also loves baths.
combine the two and you have ruby's version of heaven.

i did some serious organizing. i've got more to do, but i gots to say, i'm pretty proud of myself. :)

 ruby loves her giant teddy bear. she especially likes to use him as a little chair.

we got a special visit from our friends sarah and sam. and they came on their motorocycle which was just about enough to send ruby over the curiousity edge! she was intrigued, to say the least, until the moment they drove away.

another one of my favorite pictures of the week. she keeps doing this. she'll try to crawl over the bar on the chair, get stuck half way over, and just end up dangling there with her feet in the air. (and yeah, she might have been crying in this picture, but i just had to get a picture. don't judge me, please.)

hours of endless entertainment. ruby makes goofy faces instead of eating.

saturday morning, i took ruby with me to get my oil changed at the dealership. one of the salesmen got ruby a balloon. and yeah, she pretty much loved it. i mean, how could she not? it was ginormous.

practicing with a spoon. where in the h-e-double-hockey-sticks has my little baby gone?!

new pants. for 12.95. boom. h&m, i heart you.

aaaaaand, most exciting moment of the week.......
drumroll, please....
ruby has started standing on her own!
go on with yo badself, rubinski! she's got skills!
(and, as you can see, she's very excited show them off!)

thirteen month little chica

well, here we are. 13 months and then some. ya know, when ruby turned a year it was such a milestone. i thought it would feel bigger, though, honestly. i thought i would cry at her birthday. i thought i'd choke up singing her "happy birthday" with our friends and families. but none of that happen. on her actual birthday, i was, just... happy. i was reflective and grateful for the year we've had together as a family. i was content.

but.

i'm finding the weeks and month(s) after ruby's first year are actually more emotional for me. there is no missing ruby's personality at this age and the developmental milestones that she's reaching now are almost always specifically related to her becoming more independent. i know, i know, you're thinking i need to relax, take a breath, and stop freaking out. i know that she's not about to jump in the car and drive off to the mall to hang out with her friends. but some days, it is so clear just how quickly time goes by. and every time ruby learns to do something new on her own, something that she used to need me to do for her, i have to admit that a tiny part of me is a little sad.

sigh.

(and ya know, as an aside, i love when i'm blogging and that happens - something comes out that i haven't actually said out loud. and maybe i didn't even know it, but that i actually needed to say it.)

so, now that i've gotten that out, let's talk about what totally rocks. and that is 13-month-old-rubinski. she is crazy. like, straight-up. she's loud and, as of late, kinda all attitude all the time. she is clearly testing out limits. it's like she hit the year mark and all the sudden ruby has decided she owns this house and all those in it. (and let's be honest, she's probably not that far off.) and actually, it's pretty hilarious. loud and hilarious. she actually yelled at terence this morning. of course, you can't understand much of what she's saying, but trust me, if you were in our house this morning, you'd have known that she was not thinking of something nice while she screeched in his direction.

ya know, as i re-read this, it doesn't sound like 13 months rocks at all. but seriously, ruby acting more like a little person, for the most part, is so much fun! when she tries out hollering at me about something she's mad about and i tell her to pretty much chill out, she totally knows what i'm saying and often times will start laughing as though to say "aww man, that mama. she called my bluff again." i have a good time with her. truth be told, it's probably b/c i see a lot of myself in her. from the stories that my older sisters and my mom's told of me when i was little, it sounds like ruby may be following in her mother's spunky little footprints. and yeah, i'm pretty much a proud mama.

so, verbally, ruby's really growing. she says "mama", "dad", "bye-bye", "ball", "uh-oh", and "whoa" (i'm serious with that last one. it's usually "oh, whoa!" i'm trying to teach her "yeah, baby" too.) oh, and - this is so freaking exciting! - this week, she started signing "more" when she wanted more to eat. i've been signing "more", "eat", and "all done" since she was 6 months and it's pretty sweet to see her starting to pick it up. of course, i just think she's a genius. ha.

she's still not walking, just cruising along furniture and standing up for short periods of time on her own. but this morning, i had put her on the couch to put her shoes on and she flipped on her stomach and slid off the couch, feet first, to get on the floor. T pointed out that she'd done it a couple times before and i was surprised. i actually think it's a small miracle. she's pretty darn good at climbing up on to things, but it's the falling-to-her-death-or-seriously-painful-end part that worries me. now hopefully we can transfer this new found skill of hers to the stairs.

ruby still loves her usual loves - singing, reading, anything involving music. and lately, she's also been loving throwing balls. she totally geeks out everytime she throws one. so it seems she has some athletic ability. loves to read? can throw a ball? this kid has some serious skills. :)

alright, on to some ruby-love in photos...

hey there, not-so-little girl!



these are my feet. aren't they cool?

so this is a little blurry, but this! this is her oh-no-you-didn't face.
i think it's hilarious. which isn't the effect i think she's going for, but ah well.

lovin' up on her purple horsey.

one. part two: the deets

so, I posted a little reflection on Ruby's actual birthday but I didn't do a complete monthly post, so I'm back in full effect to take care of that!

here are the specs on our growing girl:

*i think she will be walking within the next month or two. she cruises like a pro & is starting to let go of furniture that she holding on to sometimes. funny (& scary!) thing is that she most often does this when she's taking a bath. she doesn't like to sit in the bath. she just likes to stand. ya know, like a dare devil, she just throws caution to the wind. you can't leave her alone or look away for a second when she's in the bath, obviously. but it's ok bc taking baths is one of her favorite things to do still.

*ruby still doesn't say much more than mama, bye-bye, & the occasional "dad", but that does not mean she doesn't know how to communicate, let me tell you! she loves to make people laugh. if she sees you smile at something she does, she will ham it up big time to get you laughing. she smiles at everyone, looking for a response. her receptive language is very good. if I tell her to follow me to her room or the kitchen, or to get me. book from her room, she does. basically what I'm saying is that she's a genius. ;)

*some new skills: loading up containers and boxes with random objects from around the house, giving me her arm/leg when I'm dressing her, and trying to put shirts over her own head. so smart. just growing more every day.

*ruby has transitioned over to whole milk all the time during the day and just nurses at night before bed, if she wakes at night, and in the morning. before breakfast. she is doing great and still eats pretty much anything we give her.

she is 18 3/4 lbs & 28 1/4 inches long.

now, onto the fun stuff...pictures! :) the last few months of ruby's monthly pictures were a blurry mess bc she is so hard to keep still while laying on her back. she wants nothing to do with it. so, in an effort to make the monthly pics easier (and more fun!), I'm going to let her sit up in the rocking chair in her room.