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.


  1. Thank you, thank you for sharing your thoughts here. I haven't called when I thought about you because I didn't want to ask you to wade through the bog of eternal stench again. But I have prayed for you three (for us all really) a lot. You have reminded me once again that it is to my shame that I often taken prayer lightly as though it was a last ditch effort rather than the most valuable and useful thing that I could do.

    You can be sure that I will continue to lift you guys to God every morning. Please continue to share when you have time - it is the witness of God's work in your life that will lift the eyes of the world to see His goodness.

    1. hey brother - thanks for stopping by. it really is the bog of eternal stench at certain moments. you nailed that on the head, for sure. but we're managing and doing well, despite of it all. thank you for your prayers. they are appreciated and felt everyday. love you, my brother!

  2. Hey Sis,

    I've read this post a few times (like when I know it's time to adjust my sails...), and each time I find a new phrase that resonates. "Ruby defines Ruby" is today's nugget.

    You, my dear, are a wise woman with heart and discipline, generosity and tenacity. We've known this for a long time, but I am practically vibrating with love, pride and respect because of you who choose to be.

    Not enough words, but love, love, love.

    1. now i'm crying at work, so thanks for that. ;)

      words can say how grateful i am for the support you've always given me (and ruby & T). even though we're apart, i always feel the support like you're right next to me. love, sister. love.