28 February 2013

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. :)

27 February 2013

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. :)

25 February 2013

getting away & being close

last weekend, we planned an impromptu & much needed family getaway. it was exactly what the doctor ordered. I didn't realize how much I needed, we needed, a weekend like that until T picked me up on friday from my office so we could get ruby & head straight out of town.

we didn't do anything in particular. just relaxed. we ate a lot (at times, too much) of delicious food. and went swimming, which ruby thoroughly enjoyed. we had to take her out of the pool bc she was so cold her lips were blue. she wasn't too happy about getting out but she settled down once we transferred her, still in her bathing suit, to the jacuzzi tub in our room & turned on the jets. :) she was quite happy with that (and warm!) we watched a lot of pixar movies (no surprise there) & slept in a gloriously large king sized bed. the weekend was a smashing success, I'd say.

the resort we stayed at is called lake lawn resort. it has a special place in my/our heart/s. my dad & della-mom brought my sister, sam, & I (& maybe my brother, jer, too? can't remember!) there to celebrate our 16th birthdays. and then, just 8 years later, T & i were married on the lake at the resort. so, lots of fun memories had already been had there & I'm happy to have added to them with ours this weekend.

here are a few pictures of our family getaway:

20 February 2013

wordless-ish wednesday: a giggle

here's ruby trying to ride her tiny toy giraffe. sorry, kiddo. this one might not work out for ya. but thanks for the giggle.

love this kid.

15 February 2013

making sense of it all

well, i've been formulating the sentences and phrases i wanted to use in this post for a few days. every time i get ready to start it, though, something happens. some amazing, planned-by-forces-beyond-me, connections to the people in my life, the people that i don't even know yet, the music i hear, and random conversations that i end up a part of. each connection carries me through the days and give me hope and strength to carry on. i still have quiet moments when my eyes well up with tears and a knot forms in my stomach over all we are taking in with ruby's diagnosis we learned of last week. but i know that's to be expected and with everything else in life, i try to just ride whatever wave i'm on at the moment until i'm either accidentally swallowed up by the next one or skip smoothly onto the next wave, ready for it.

so, one of the connections that got me through this last week was this post on one of my favorite blogs, momastery. have you been over there? if not, check it out asap! you will not regret it. anyway, what she said struck the heart of me. glennon (the author) is in a different tough situation than i am but the message remains the same. one of the parts that really resonated with me was this:

"i think that dreams are funny things. we can certainly, i believe, be folks for whom all of our dreams come true. but life is the wind, we are captains, and dreams are sails. sometimes we must respond to the wind by lowering one sail and raising another one. it does us no good to sit stubbornly with the wrong sail raised and wish the wind were different.  we’ll be dead in the water. so for now, i’ve responded to life’s wind and raised a new dream sail."

right now is a time of mourning a certain dream we had for ruby. taking her to dance class, like i had when i was young. for T, watching her a soccer practice. these are dreams that we have to let go of. but we can still embrace all of the things that ruby can and will still do. my new mantra: "ruby defines ruby." there's no one else like her and we will support her to accomplish whatever she decides she wants to. we/she might go about it differently. we need to adjust our sails (and some days i'm sure i will do it kicking and screaming), but indeed, we will be sailing in a different direction than we thought we would be when we first started our parenting lives.

another incredible, pre-planned thing that happened this week is that we've gotten in contact with a woman who lives not too far from us and is a part of the local fsma chapter here in wisconsin. i've been emailing with her, as has T a bit, and it's been making a world of difference. crazy enough, she happens to work about a mile from our house and even has a friend, who is also an SMA mom, who was following my blog prior to ruby's diagnosis! i am still in shock by this. what a small world. i've heard people call happenings like this "god-winks" and it does seem like an appropriate title. so, god-wink #2.

moving on to #3. the day we were told of ruby's diagnosis, my della-mom told me that she'd spoken to her dad, who'd spoken with his best friend, who is a doctor at children's hospital in minneapolis, and he recommended we contact dr. mary schroth in madison. he said that she is the best of the best when it comes to SMA and that he'd call her and let her know we'd be getting in touch with her. this was last week. i decided to let things settle for the first few days and then i'd call this week. well, wouldn't you know that within the first couple emails with the other SMA mom who lives near us, she recommended we call the same doctor! she went on to tell us about what incredible care her daughter has received from dr. schroth and answered all of our questions about how it would work bringing ruby to madison for her check-ups. another god-wink, saying we're in good hands, and have people to take care of us as best as possible. (and people we don't even know!)

and then last night, i was looking through the fsma annual conference booklet from last year, preparing for this year's conference, which we want to attend (it's in anaheim, ca...hello, disney land!) and i was looking at the list of fundraisers from around the country that contributed to the conference last year. my eyes quickly fell on a familiar name - a woman who i know. who works in my office. who i've sat ten feet from for almost five years! GOD-WINK.

lastly, i couldn't publish this post without giving a shout out to cloud cult. this band is headed up by craig minowa, a man who has known more than enough about the loss of a dream. his music is laced with his attempts to make sense of the sudden loss of his 2 year old son. and this week, every time i was in my car, mr. minowa became both song writer and therapist. both singer and comforter. with words like these...

"i'll give you some advice, you gotta live a little lighter, gotta breath a little deeper, gotta suck it in... there's your medication...

if you pray to god for rain, don't complain about the lightning. if you're asking for directions, don't you moan about the distance. must you lose it, lose it all... to find your appreciation?

if you give up all your baggage, you will likely float away, but you can't know beauty if you don't know pain.
you gotta feel it, feel it all... there's your meditation"

...somedays you give thanks. somedays you give the finger. it's a complicated creation."

so, there's that. i mean, can you say ugly-cry? but also feelings of hope all at the same time. god bless you, craig minowa.

some people might look at all of this as coincidence. but i just can't think that. these simple experiences over the last week have literally kept me moving forward. i'm not happy about ruby's diagnosis. there are moments where i am mad as hell about it. but i can't help but feel like the spot that we are in right now, all of the events that led up to this experience for us, are there to take care of us. i still don't believe that everything happens for a reason, or maybe i just know that if everything does happen for a reason, i'm not entitled to an explanation. i'm okay with that. but feeling like despite it all, we are still being taken care of and it the best position we could be, helps me move forward with hope.

09 February 2013


i had a hard time deciding upon a title for this blog post. or how i was going to go about writing it. it has been a long, emotionally (& physically) exhausting week. but right now, i am hopeful.

on tuesday ruby was diagnosed with Spinal Muscular Atrophy, Type 2. (SMA) if you've been following along, you know ruby has had gross motor issues & generalized weakness for months. we had waited in anticipation for her neurology appointment & i was almost sick with nerves. well, just two weeks after that initial appointment we received the genetic testing back confirming ruby's diagnosis. for those of you who are not aware of what SMA is a great website to check out is fsma.org.

this week, of course, has been so hard. the first day, i was in shock. speaking to my family was horrible & re-telling the diagnosis opened up the floodgates of emotion each time. at the same time, our families have been amazing. they have basically been the force that has gotten us through the terrifying & overwhelming moments. there have been times when i desperately needed to talk to someone & each call that ended in a voicemail sent me further & further over the edge until just the right person was available & was able to calm me, give me just the right words, & send me on my way, stable enough to carry on for the rest of the day.

but i am focusing on today only. i can't look far into the future, worrying about if ruby will live to go to high school or college, get married or have children of her own. will she be in pain? will she be made fun of because she won't move like her peers? but all i can focus on is right now. if i look to far forward, i get a knot in my stomach & it feels hard to breath.

right now, my sweet girl is happy & healthy. she has her beautiful & brilliant mind in tact & she will stay that way. no matter the trials we will go through because of this disease, T & i will make her life the best we possibly can. ruby has a lot of positives going for her (no respiratory weakness & developed to taking independent steps at one point) so that is very good & means that ruby is starting from a good place.

no matter what, the truth of this disease is that it will make ruby weaker overtime. and more than likely, i will outlive my perfect child. because of this, i am certain i will come here from time to time to curse & scream & cry about what an unfair piece of shit this diagnosis is to our beautiful ruby. those periods of time will show their face in between my attempts to stay positive. but for now, ruby is happy. & healthy. we will pray for and work for a cure and enjoy every moment with her.

02 February 2013

birthday celebration: epilogue

so, lately i have been focusing on all that i can't know. that sounds crazy. basically, i've meditating on how little i am and not holding me to a very high standard of knowing how everything works in my world. this world is a beautiful, and often times, heart breaking place. it's exhausting trying to make sense of it all. and there are quiet, perfect evenings like tonight, getting home from celebrating my birthday with some of my favorite people, that make me stop and be grateful for the sparkly snow and soft light.

i am very much going to try to stop and take note of these moments more often.