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. 

some memories

hey there little neglected blog, how are you? it's nice to see you again. let's move passed the awkwardness of me ignoring you for months and move on to some memories to be documented, shall we? 

in February, we went on our second annual family weekend away. when ruby was diagnosed with SMA last year, we went to a resort (the same one we got married at) for a weekend. it was great to get away, spend some QT (quality time, in T Sun language), swim, and just relax. this year, we thought we should continue the tradition and decided to take in a weekend at the Dells and do some indoor waterpark fun. ruby loved it, of course. it was, indeed, fun to get away and have some uninterrupted family time. 

when we were at one if the kiddie pools the second day, ruby was playing in the water & I was watching her watch all the other kids run around and splash. I suddenly got so, so sad. I was probably completing projecting this on her & she was likely just happy to be sitting in the water, crawling around. but I told T that I wondered if she was wishing she could be running around, too. and all of the sudden, I was in tears. Terence was amazing, like he always is. he went and got ruby & they played like crazy in the water, for a good hour. she was laughing so hard and loving every minute of it. I said back and cried, feeling thankful for what a great dad T is and also recognizing that my 7 month pregnant hormones were also at play here. eventually I relaxed & just enjoyed watching them play. they were running under these huge buckets of water that would fill up & the eventually dump out on their victims below. a dad came up to me & said "what a brave little girl you have there! my 7 year old won't go anywhere near those." I smiled and remarked that that is ruby's natural way. she is always looking for more fun, something new, and she doesn't let anything hold her back. it was a godsent moment for that guy to remark that ruby is brave, though. I needed to hear those words, even if he had no idea the impact they had on me in the moment. 

that was also the first weekend that we took ruby out with just her wheelchair and no option to push her in the stroller. she wanted to use her chair so that's what we did. on our way back on Sunday, we stopped by an outlet mall and ruby got to do some shopping, independently, in her chair. it was so much fun to see her roll around and look at the things she wanted to check out (disney toys, hair accessories, sunglasses) without asking me to take her "over there, mama! look over here!" I got a sweet pictures of her checking out some headbands and I love how it shows her slowly figuring out her own ways to be independent. 

some moments are hard. some memories are like a punch to the guy. but overall, we are so grateful for ruby's health and pray that baby boy coming in just a few weeks will be given respiratory strength and a fighting spirit, like his sister. I have no doubt she will teach him all sorts of things that their dad and I can't. I know they will fill a spot in each other's lives that no one else can fill. and I know that they both do that for their dad and me. 

ruby & ava

ava stayed the night at our house is friday while her parents were in chicago & these two girlies had a wonderful time together. they kept me busy, for sure, but we had some good laughs. they ate pizza, watched movies, had fro-yo, shared ruby's bed (& actually slept!), played with bubbles & sidewalk chalk, & even had a play date with another little lady around their age, too. all in all, some good memories were made! here are some highlights...

*PIZZA PICNIC*

*BEING GOOFY*

*THIS ISN'T CUTE AT ALL*

*WAGON WALK!*

*PASSED OUT LIKE THE PARTY ANIMALS THEY ARE*

*ROCKIN SOME BED HEAD*

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. 

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. 

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!

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.

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.”

word.

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!

wordless-ish wednesday: cool chick

peace out, dudes. peace out. (and also, "i'm two!! one, two!!")

wordless-ish wednesday: these two

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

capturing "ruby"

ruby had a teacher at daycare who is also a skilled artist. "ms. carolyn" often drew pictures of ruby & her classmates that turned out fantastically. carolyn is certainly skilled at capturing the essence of the subject she is drawing.

after ruby's toy story themed party, carolyn was inspired to do a drawing of ruby in her cowgirl jesse costume & she shared it with us. it is so "ruby" (especially the pigtails!) :)

carolyn has an online portfolio of drawings and you can find her other work at http://superstudios.shutterfly.com. she can create drawings from photos, too, & is very reasonably priced. i am searching through photo books to possibly order some works for a few upcoming family events. please take a look at carolyn's portfolio & feel free to contact her if you're interested in having an original piece for yourself!

thank you, carolyn! we love your ability to capture ruby's spirit!

special saturday sister soirée

i'm doing the alliteration all the way tonight. ;)

ruby & i road tripped up to madison today to meet up with my youngest sister, sam. she happened to be in town with a fellow nurse (& friend) who was taking a big test. so, while her friend was test-taking, we got to hang out with ruby's auntie sam. it was SUCH a great day. we hardly ever get to spend one-on-one time with any of our family from mn because whenever we are visiting up there, it's always a jam-all-your-visiting-with-everyone-into-two-days kind of weekend and most visits overlap. so, the individual time with sam was quite lovely.
she and her fiancé, jesse, gave ruby some thoughtful birthday gifts and then we ate lunch at one of those mongolian grill places. for the life of me, i keep messing up the name, so i'll just skip that part. (ho hut? that just sounds wrong.) anyway, it was scrumptious and we over-ate. this was what sam said her goal for us was when we walked out of her hotel room and i can confidently say that we met the challenge.

when we got back, we splashed around in the hotel pool a bit and then searched pinterest for gender reveal party games. i think we found some fun ones and i am ELATED to say that sam is planning the party for the last weekend of april when we are in mn and can actually attend! it's going to be an exciting evening! hoping my nephew/niece cooperates and shows the goods off so we can be revealed that kind of big news. :)

we traveled home & ruby passed out about 5 minutes after we got on the road. she was pooped and i jammed out to twilight soundtracks the rest of the way home (say what you will about the movies/books but those soundtracks? quality.) it was a perfect saturday. it was only missing a nap but i plan to make up for it tomorrow. priorities, people.

oh, and ms ruby is front facing now in her car seat and she is a happy little girl about it. the few times I turned around to see her today, she was just staring at me smiling. one time she busted out "i see you, mama!" love our growing girl.

enjoy some pictures of our day. hope you have a happy, happy weekend!

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.

two.

only 22 minutes left before this day ends. the day my sweet girl was born, already (and in some ways, just) two years ago.
it still surprises me some days that we have a toddler. but ruby never let's us forget it. she is skilled at the toddler ways already. she is so much cooler than I could have ever imagined she would be.

happy birthday, sunshine girl. we love you, ruby harper.

ruby & her bff

ruby & i met ava & her mom, becky, at the daycare ruby & ava go to. they have been together, since the beginning, all the way back to the "pear room". :) sadly, they aren't in the same room right now but since becky & i quickly became friends, we all see each other outside of daycare & work hours. last weekend, we played with ava while becky had a work obligation. we had so. much. fun. !!!! the girls were great together, talking to each other, playing together, bickering back at forth at times, & basically having the time of their lives. it was fun to see, for sure. after becky came back, we all went to the craft store & then noodles & co for lunch. pretty much the perfect day with our very good friends. mama/daughter double date for the win!

and here are some shots of the little lady's play date:

the details

okay, so i jumped on here thursday & quickly updated about the good news of ruby's confirmed (I guess I should say, corrected) diagnosis. but i wasn't too specific about what that exactly means for ruby. so, here are the details!

basically, people diagnosed with sma can be anywhere on the spectrum of strength/weakness, with type 1s being the weakest and type 3s (or type 4 or adult onset) being the strongest. however, within each type there are people who are stronger or weaker than another person with the same type of sma. additionally, two people could have the exact same genetic make-up (in terms of the smn1 & smn2 genes that are affected) but still have different symptoms and prognosis. there are unknown genetic factors that impact those things. so, as you can see, no two people with sma are the same.

clinically speaking, type 1s never sit up. type 2s sit up but don't walk. type 3s walk but then develop weakness overtime. in ruby's case, because she was taking independent steps at one point, dr schroth has diagnosed her as a type 3. ruby is strong, in terms of her respiratory functioning, which is key. overall, ruby looks really good, considering her genetic male up. within the first five minutes of dr schroth meeting and observing ruby, she had diagnosed her as type 3 and told us she will have a normal life expectancy.

it was the only few minutes of the (very) long appointment that i cried. happy, happy tears.

dr schroth did give us information on potential medicines that we might be able to have ruby try. they haven't been proven to work in clinical trials but they have worked for some people. so we may look at those as options in the coming months. there are side effects & ruby would be monitored closely to make sure she's doing ok on the medicines. if we go that route, I will certainly give an update.

other than that, we were basically sent home with a reminder to monitor ruby's cough, if she gets sick. ruby will likely become weaker whenever she has a respiratory virus but then should regain strength after she feels better again. at this point, dr schroth said that ruby doesn't need a cough assist machine or bi-pap machine to help with her breathing at night and/or when she's sick.

we will continue to work with ruby's PT, lisa, and will take ruby swimming often, which is also really good for her. I also have to call and find out where she is on the hippo therapy wait list. I'm excited to get that started. I think ruby will freak out when she's actually on the horse at first but eventually I think she will like it.

other than that, ruby is a typical (almost!!) two year old. dr schroth made this note in ruby's discharge summary:

"ruby is very smart. the only delay she will have will be gross motor and thus, should be disciplined as any other child, including boundary setting."

noted, dr. schroth. noted. ;)

the best thing i've heard in weeks...

we had our first appointment with dr. schroth at the american family children's hospital in madison today. just like everyone told us we would, we LOVED her & everyone we met on ruby's new team.

i am going to keep this short and so fabulously sweet. she told us that ruby's actual diagnosis is type 3 (not 2, as we had previously been told) and she will have a normal life expectancy. she will have challenges. but T & i should start saving for college.

can i get a collective "heck yes!" & a virtual high five?!

now. let's all go eat sushi. :)

wordless-ish wednesday: moments with dad

ruby is so fortunate to have her dad. T is a great dad. he's loving and affectionate. he is always telling ruby how much he loves her. he wrestles with her & makes her laugh. they are pretty good buddies. here are a few special (and fun!) moments between the two of them. love our little family. :)