08 April 2014

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. 

22 January 2014

then & now

one year ago today, we had ruby's first neurology appointment. two weeks later, two days before my 30th birthday, we got her diagnosis of SMA. 

earlier this month, I was having a lot of anxiety & flashbacks to those days last year, when I just knew something was really "wrong" & then feeling like we were living our worst nightmare. 

a year later, some days are really painful, but those days are few & far in between. this is our life & it is wonderful. it's not what we imagined it would be. it's so much more. SMA & all that comes with it has taught me so much about perspective, about gratitude, and about faith. 

in just a few months, we will welcome another baby. this time we will know from the beginning that he will also be affected by SMA. we won't worry for months about how best to help him, we will know how. we won't experience a "diagnosis day" like we did with ruby. we will have a team of people and support in place from the get-go that we trust to help support him when the time comes that he needs the extra support. 

when we got ruby's diagnosis, I felt like everything had changed in an instant. but almost as quickly, I realized that nothing really ever changed at all. we are raising our kids, just as we would if SMA didn't affect our lives. instead of living in constant fear of what the future may bring, I live each day, focuses on being thankful for what we have.   

"may your choices reflect your hopes, not your fears. - nelson mandela 

01 December 2013

FSMA Conference

hi there.

thanks for hanging around. i haven't posted in months. lots going on but i've known exactly what i wanted to post the next time i logged in. so, here i am to document a few details from our trip to our first Families of SMA Conference, which was held at Disneyland this year. it was a successful trip. full of lots to do and not a ton of down time, but i really couldn't be happier with how it all went.

there was a program specifically for newly diagnosed families that we attended the first afternoon. i won't lie. it was hard. i sat and listened, holding T's hand, with tears streaming down my face the whole session. the president of FSMA spoke and has a very genuine, kind way of communicating. it was a relief to be somewhere safe, surrounded by people who knew exactly how we were feeling. at first, i kept thinking, "i hope i'm not the only one crying" but when we took our break, i saw that i clearly wasn't alone. i think that's what i loved the most about conference. we didn't have to explain why we were crying at any given moment. we didn't have to explain anything. everyone just gets us. in our every day life, we have a mostly positive attitude. we keep smiles on and carry on with our daily responsibilities. we're strong for one another (T & i) and for ruby. and because it doesn't do any good to constantly dwell on the pain that SMA brings. but i know that in order to carry on, we have to sometimes let ourselves sit with the fear and sadness that we have. some moments we have to give in to it in order to let it out, let it go, and move forward. so, the conference was good for me in that way. before the conference, i hadn't really reached out to the SMA community. after the conference, i was friending people on facebook like a maniac. :)

next year's conference is in DC and we are hopeful that we will be able to go. lots to plan for it but it's something we don't want to miss out on. i've connected with many families in the online SMA community and really want to be able to meet them in person, too.

we went to several different sessions but the one that i liked the most and has stayed with me was a writing workshop. it was led by a husband and wife, who were both writers, and who also have a child who is diagnosed with SMA. one of the exercises we did was to write out our recollection of a significant memory. i thought i would share what i wrote here.

a memory: ruby's diagnosis day

i see...
a lot of hard surfaces, tiles, counters
ruby playing with crayons
a lot of new faces

i feel...
ruby's toys all around us
terence's hand

i hear...
a lot of words. most of which i don't remember now, other than the doctor answering Terence's question about whether ruby will ever walk (no.)
the doctor's strong accent

i smell...
hand sanitizer and soap

the light is bright and harsh. it isn't soft. there iss no place to hide in it.

i want to leave.

i think that this can't be happening. it doesn't make sense.

i feel sick to my stomach. i feel shocked even though i knew this was the answer already, really.

we talk to several strangers & then we leave.

i call my family.

i say that my husband might need more support.

i realize that everything has changed. and that nothing really has at all.

26 June 2013

wordless-ish wednesday: huge disney photo dump!

so, I really am going to keep this pretty wordless. I am formulating a post about our experience at the FSMA conference & then our vacation but first I want to document some of my favorite photos from the trip. I took around 400 total so this is only a tenth of them but just looking back over these few remind me of how lucky we were to get to do this. and how fortunate we were to get to go with some family. actually, looking at these pictures, i'm disappointed in myself for not getting any pictures of my mom. hoping that my sisters may have some. i also will never forget that we owe our entire trip to so many friends, family, & strangers that helped us get there. "thanks" can't be said enough! 

so, enough talk - here is our trip in photos!