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.

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!

what's the latest?

so, i feel like updates are in order. it's been busy around here lately & I've not had the time to blog like I have been lately. (and pardon the bullets but it's the easiest way to get everything out this time.)

• biggest new around here is that we are in full packing/painting/moving mode. it was very sad when our landlord passed away last august. our new landlord is very nice but plans to move into our side of the townhouse & rent out the other side to someone he knows. so, we found a really cute, lower flat just one block away from our place now. no stairs, which is good for ruby, and all hardwood floors, which is also good for her walker ("wheels", as we call them.) we move in officially next weekend but our new landlord has given us the keys and we've been painting and moving things in a little at a time, which is a huge help bc moving with a two year old is not the easiest thing ever. looking forward to getting in and getting settled.(and decorating!) i'm in full-on purge mode, boxing up ruby's toys & baby stuff she's too big for now (this does make me tear up AT ALL) & storing it in the basement. tomorrow i'm going through my clothes & the kitchen & boxing up things to donate to goodwill. it's kinda like spring cleaning & it feels good!

• on a note-so-good note, we had to put one of our cats, Peyton, to sleep last weekend. Saturday morning, I woke up to him crying in pain & listless. took him to the ER vet, who confirmed he had a bladder blockage. she explained the process for fixing it (although it wouldn't be a for-sure fix). it was a horrible decision to make & it was all very sudden. I think the hardest part was having to explain it to ruby & her saying she "love that cat. I get Peyton, mama. Peyton come home, mama." seriously, like a knife to my heart. thankfully, she's two & rebounded quick. but his brother, eli, not so much. she's been sad, crying downstairs, clearly looking for Peyton. we were originally planning on giving them to the humane society to re-home but then obviously changed our plans when it would have been only eli to go. (they would have been adopted together, only.) so, a friend of mine, who also had to put down one of her cats recently, said her family might be willing to adopt eli. and then our new landlord made the same offer. so, it's been decided that eli will stay with our new landlord (who has two other cats, too), I'm glad that eli won't have to adjust to a new home & I think our landlord will take good care of him. we are sad about Peyton but I think everything else has worked out well for eli. we definitely wanted him to be with other cats bc he's always had Peyton & we don't want him alone now.

• shifting gears, we are continuing our process of determining how we are going to go about having more kids. we met with a geneticist who did some testing for us to confirm our SMA carrier status (approximately 2% of all children born with SMA have only one parent who is a carrier, instead of two. this scenario would greatly reduce the likelihood of having another child with SMA, so it's good to have the carrier status confirmed.) we were also screened for cystic fibrosis carrier, as well as a hemoglobin something-or-other disease that is more common in those with Asian ancestory. both of those results came back negative, so that's a good thing. we are going to be meeting with a fertility clinic that does preimplantation genetic diagnosis along with IVF. at this point, we want to have as much information about all the options as possible before we make a decision. I feel good about that. I'll update should we make any decisions one way or another. I can say that we have made the decision not to try to have another baby naturally& take our chances of having (or not having) an affected child. so, we will move forward from here & see what's in store for us. nothing is easy but it will be worth it.

• we are planning our first trip with ruby to disneyland. eeeek!! happy happy happy! families of sma (fsma) is having their annual conference there this year & we will be going, along with my mom, my sisters lisa & wendy, & their kids. cannot wait! ruby & I have been watching various videos of rides online & squealing in delight. so, so, SO excited. :)

I think that's the latest & greatest around these parts. busy, but all is well & we are loving spring & find beautiful moments in each day. like picking our noses (ruby) & snuggling (us)...