flashback friday: oh baby

i am seriously jonesin' for a baby. for reals. so, to hold me over until i get that positive test, i've been looking at old pictures of ruby. oh good grief, she was an adorable newborn baby. when i look at these pictures, i remember the long nights and painful nursing sessions, worry over not doing anything right, and evenings full of tears (her's and mine). it's good that the infant stage is just that - a stage to enjoy and then pass through. i'm ready to enjoy (and endure) it again. hopefully in the next few months we will be able to share news of a new baby coming. but for now, we will flashback to brand-new ruby days. oh, they were sweet & snuggly.

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!

lyrics i love: cloud cult

cloud cult. do you know them? if you don't, you really should sit down with one of their albums & have a drink. i owe my discovery of them solely to my brother in law, lucien. (if you ever read this blog, a million thanks, my brother!)

so, cloud cult is basically the most interesting-sounding, emotion-evoking band i've ever come across. i always cry when i listen to their music. sometimes in a happy way, sometimes not so much. but they hit the core of me every time.

this song is one of the best road trip songs ever written. it just feels right, blasting through your speakers, with the windows rolled down. my definition of perfection.

i'm actually surprised i haven't posted any cloud cult on here yet but i think i'm tweaking out for the concert i'm going to next weekend that they will be playing at. eek! seriously stoked.

so, it's really quite hard for a lyric junkie like myself to choose just a few lines of their songs that are my favorites because they are just all so damn good. (although, if i was being forced to choose from this song, i would just have to go with "i could use your lips on me and a little bit of dramamine..." seriously. seriously!)

so, this song is called "journey of the featherless". and truly, do yourself a solid & youtube this one. you will not regret it. enjoy!


got myself a mission
i'm going to find heaven
i made crepe paper wings
i think they'll carry me well

i left you a love poem
the best i have written
my favorite words
were the ones i couldn't spell

they say that i'm a lunatic
they say that i am full of it
i say that it's worth dreaming
just for the dream of it

it's all about passion
it's all about perception
don't call me on my cell phone
cause there ain't no reception
when i'm gone

...

honestly i miss you
and i hope that you're missing me
cause i could use your lips on me
and a little bit of dramamine

for the moment i can see
way better than i've ever seen
don't sell my stuff on ebay
cause i might be back
before i'm gone

...

i'm not the kind of man
who's into looking downwards
i drank my share of pity
from the bartenders cup

so many people
wondering what's the right direction?
as far as i'm concerned
there's only one way up

and my fingers they are blisters
and my eyes they are bullet holes
my heart is still beating
guess i'm pretty lucky...

hang in there. just sit with it.

since the first time i heard that quote "in three words, i can sum up everything i've learned about life: it goes on" (robert frost), it has stuck with me. it has sorta melded with my favorite john mayer lyric: "and if you never stop, when you wave goodbye, you just might find if you give it time, you will wave hello again."

it's how i have aimed to live my life. minimal freaking out. just go with it, let myself sit with whatever i'm feeling at any given time & them move on from it. don't force anything. as much as i would like to control everything, i cannot. we can't stop this wheel; life keeps on moving.

i had heard that when a parent faces the diagnosis of their child's illness or disability, there's a matter of time that needs to pass before the parent can just move forward. i suppose it's kind of like a grieving period of sorts. life is not and will not be how you think it is going to be. sometimes, you have to let that dream go & accept other realities.

i'm learning this with ruby. at 16 months, i called her pediatrician.

"ruby's not walking yet. but still taking steps. should we be worried?"

"no. i'm not worried. keep practicing with her & we will see how she's doing at 18 months."

17 months. 18 months.

dr. cafaro (our pedi) asked me all the usual developmental question at ruby's year & a half appt. yes, yes, & heck yes to all of them. EXCEPT.

walking. no walking. no jumping. no squatting. no balancing. lots of falling. at first, the pedi recommended we see how she's doing at 21 months. but then i had ruby try to walk for her & she saw what a struggle it was for ruby & she agreed a PT assessment would be helpful. she assured me the PT would help & we left the office.

it's been a little over 3 months since ruby started PT. within two weeks the PT told us that she wasn't seeing progress as soon as she thought she would and encouraged us to seek out a neurological assessment. i was frustrated bc i wondered how much progress could one expect to see in two weeks?? but looking back on it, i'm glad it was recommended.

ruby is still not waking. she will be 22 months in 10 days. she takes steps less than she used to, but still does sometimes. we have had her fitted for SMO's, an orthotic that gives her more stability in her ankles & helps her to stop pronating her feet as much. she has made progress with them, in some ways.

it's funny. when ruby first started PT & people asked me about her progress, i thought "well, she's still not walking", so no progress so far. but this week in therapy, we (myself & her therapist) were talking about how much more ruby squats, how she will stand up for 10 seconds & not fall, how her core muscles are much stronger. it's these small skills that other parents take for granted. it is so hard for me to watch other kids just stand up & take a step, catch themselves from falling over. literally, i could BLOW in ruby's face when she's standing and she'd fall over.

why? why? WHY?? why do i have to learn some bullshit life lesson about being grateful that ruby's not in a worse situation? or that i should be ok with this bc this is the life that's been dealt to her? that's crap. she's a little girl. with no reason to have to face struggle.

but here we are. almost 22 months & ruby can't walk. if i am being honest, she definitely is not walking as much as she used to. this? it kills me. there were days that i felt so defeated. responsible for her lack of progress & worn out bc I spend every minute of our lives trying to make whatever activity she is doing into something that's therapeutic.

i don't remember when it changed; my attitude. maybe it was just before christmas. i realized ruby's other development was not slowing down. in fact, she is soaring ahead. we have conversations in the car that are basically comprehensible (to me, that is). she is testing limits. she's learning her colors and shapes. she's typical. and she's HAPPY.

what more can i ask for? she's a happy kid. she sees other kids in her daycare walking & running and she wants to, too, but she doesn't get upset about it. she gets from point A to point B just fine & she is like any other 22 month old other than the fact that she doesn't walk. i know i have to enjoy ruby, where she is at. her neurology appointment is on january 22nd. my guess is that we will move forward with ruling out muscular dystrophies. hoping those won't come back positive. my hope is that she will end up being diagnosed with congenital hypotonia, meaning she has low muscle tone & we will keep working on supporting her until she makes more progress.


so, wow. this has been a long post. i knew it would be. it's a lot to get out. as a parent, i never imagined my daughter or i would have to experience this. no one else in my family has gone through this. i had no reason think i would ever experience anything like this. but here we are. sitting with this experience, letting it settle with us, and pass as it may. finally finding some sort of peace and acceptance. i don't know what this journey brings, but i do find solace in the sentiment that "it goes on" no matter what. i don't know what power there is out there that's controlling this all, but i know i'm not the first to go through it and i won't be the last. there's something comforting in that.

thank you for letting me get this out. to the few people that read this, thanks. i have been a fool to bottle it all up for so long.

i will, of course, update as anything new re: ruby's progress occurs. until then, i will keep blogging about life as we know it: the perfect refrain.

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. ;)

with resolve

so, i've never actually been serious about setting new year's resolutions for myself. but for some reason, this year i feel motivated to do so. and i want to be specific about my plan to carry out said resolutions because otherwise by january 10th i'll be eating cheesecake by the pound, wallowing in anxiety, and will have missed the deadline to sign up ruby for swimming lessons. (again)

so, here goes...

1. i would like to do a cardio workout 3 times a week and do some strength training 3 times a week. T bought me a kinect for the xbox & i have already tried out zumba and another fitness game he got me. so far, i really like them. it's convenient & fun. win and win. i have a super cool planner and want to schedule out my workout sessions in it.

2. menu plan. i want to cut out us eating out so much and buying convenience food at the end of the day bc i don't have a plan. this is another thing that i will use my planner for, as there's a handy dandy menu planning/grocery column.

3. get back to using the cash envelope system for anything other than bill paying basic things (like car loan, student loan, credit cards, cable & electric, etc). all other items in the budget, we will pay for in cash. we started this system last summer and it worked great. but after T's mom passed, i didn't keep on top of it and things got a little out of our normal routine. but i am going to get it back in order. we save a ton of money using that system.

4. worry less/blog more. i am putting these together because part of the problem that arises when i start worrying is that i don't DO anything with the worry and it just keeps eating away at my energy, my focus, and my hope. but blogging helps. it helps to get it out there and out of my head. i also plan on talking to people more about anxieties i'm having instead of thinking i'm bothering people or afraid to admit my fears. i plan on making a blog schedule in my planner (i know, my planner is legit!) in general, i'd like to blog at least three times a week. feel free to call me out on that if you don't see me around these parts for several days. ;)

5. DO more with ruby & T. more than just the usual brunch on sunday and trips to target. (not that those two activities will be going anywhere.) but i'd like to add in activities like going swimming, maybe camping (we have this kick ass tent that we have never even opened!), go see a drive-in movie, pick strawberries, take bike rides together. you get the idea. just DO.

6. get pregnant (maybe even actually have a baby!) i won't go into detail on my strategies for accomplishing this task. ;) you're welcome.

i think this covers the big ticket items that i want to focus on this year. don't wish me luck, instead wish me motivation, resolve, and stellar follow-through skills. (oh, and T, you can crack down on me if you see me slipping. thanks, amigo!)

happy 2013, folks! :)

2012: the year in a word (or two)

i was reading another blog and the author had written a post titled "one small word". the idea was to sum up the year she had in one word. it was an idea that intrigued me so i am doing the same.

after thinking about it for the past couple days, i've settled on one (well, two actually).

roller coaster.

sounds a little scary, right? well, at times, this year has been downright terrifying. as in, remind-myself-to-breath-&-keep-moving, hold-up-those-around-me-because-there-is-no-way-they-can-make-it-on-their-own scary.

but then there have been moments when i've felt like i was absolutely flying. full of hope and awe.

i know that what i'm describing sounds like most years. it's life, right? full of ups and downs, no matter who you are and no matter what year you've just lived through. but this year, the concept has gone to the extreme on both ends of the spectrum. there have been so many moments when i've felt like i'm literally holding on to whatever i can, whatever hope i can muster up, so that i don't go flying off of this metaphoric roller coaster. i can't remember a year quite like this one. between moments like losing a pregnancy, watching my beautiful daughter turn one year old and continuing to grow everyday, losing T's mom, celebrating my parent's 20 year anniversary, and coping with ruby's developmental delays (and what other physical hardships she may or may not have??), this year has torn me down and lifted me up over and over again.

the good news is that within the last few weeks, i've come to a better place regarding some of the hardships. and while i'm still battling others, i am making the choice to focus on the moments of the last year that have given me reason to hang in there. incidentally, the other word the kept coming to me about this year was "hope". indeed, hope has certainly gotten me through some trying times. it is with hope that i move into 2013, along with a slew of resolutions (mostly small in task, but big in reward). i hope it turns out to be a much happier year. here's to doing all we can to making it so. i wish a happy 2013 to you & your's!