Sunday, July 3, 2016

FIRST National Family Conference 2016, and Mom rides the trolley...

I realize I am SUPER late on posting more updates about the FIRST Conference in San Diego last week, but any spare moment I have had had this week has been dedicated to trying to catch up on sleep.  I promised updates of shenanigans, and let me assure you, shenanigans were had, mostly involving my mother.

On Fridays at the conference we always have a free evening, where we are on our own to sightsee, eat dinner, shop, whatever we want to do.  So Jordan and I decided we wanted some real, authentic Mexican food, and the best place to get that in San Diego is Old Town.  So we set off on the trolley, where Old Town should have only been about a 10 minute ride from our hotel.  About half way there, mom realizes she left her cane sitting at the trolley station, and has to go back to get it or she wouldn't be able to get around without it.  So she and Gavin waited for the next trolley going back to the hotel stop, while Jordan, Sadie, Ashlynne and I took off for Old Town in search of promised good food.  We settled on a place that looked very authentic, so it had to be good.  I wasn't very hungry, so I just ordered some queso, I love the white queso that you can get at "real" Mexican food restaurants.  When the food finally came, my queso was sat in front of me, and I asked for some chips to go with it.  The waitress looked at me like I grew a second head, and brought some back.  I went to dip my chip, and it broke.  My queso was a semi melted block of cheese.  I lost what appetite I had, so Ashlynne proceeded to embarrass me by molding the cheese like it was a glob of play dough.  We met up with my mom and Gavin after they arrived and ate, and my mom said her cane was sitting in the exact spot she left it, just standing up.  She was laughing so hard she was crying... Oh the little things.

Here's the culprit.  The walk of shame
after her fun night on the trolley
Leaving Old Town involved another incident with the trolley.  As I boarded the train, and turned around to help Jordan lift the stroller up, the doors shut, leaving Jordan and Sadie, my mom, and Tracie, another one of our FIRST friends.  So we take off for the hotel, and decide to just wait for them at the trolley stop.  About 15 minutes later, I get a text from my mom, "Unbelievable, they left Jordan and Sadie again!".  At the same time, the trolley arrives with Jordan, Sadie, and Tracie all getting off.  So I decide I better call my mother, when I find out she is on the first car of the train that has just left our stop, not realizing they all got on, and got off of the second car.  I explain Jordan and Sadie weren't left, they're standing right by me, and where is she?  Well, she didn't get off because she was so upset that she thought they got left again, that she didn't even realize the train had arrived to Rio Vista Station.  She was just toodling along on the San Diego trolley, with no clue where she was.  I explained to her she would need to get off at the next stop, and ride the next train back, because she only had 20 minutes to make it back before the train stopped running, and she would be stuck wherever she ended up.  Eventually she made it back, but she spent more of her "free evening" on the trolley, rather than taking in San Diego.

Sleep evades me at the conferences because I am normally up late talking with everyone, and having our little pow wow's in the lobby.  This year however, sleep evaded me because of the snoring taking place in the bed next to me.  I have spent nights in hotel rooms with my dad before that I thought were miserable, but let me assure you, Mom puts him to shame.  It sounded like someone was starting up a chain saw.  I'm pretty sure it was incorporated into a nightmare I was having involving Leatherface.  I remember yelling in the middle of the night for her to turn over multiple times, and at one point I remember tossing a pillow in her direction.  This led to her going to sleep in the other room.  I felt bad about that, honestly, so the next night I decided to sleep with my Beats on, and call it good.  No wonder my dad is always tired!  (Love you, Mom!)

Before we lost Grandma at the beach.
Gorgeous :)
And last but not least, I lost her at the beach.  Ashlynne wanted to play games on the boardwalk, and
Gavin wanted to go to the water, so after Mom assured me should would keep her phone on her and answer it, we decided to divide and conquer, she stayed with Ash, and I went with Gavin.  After taking pictures, my phone battery was getting low, and I decided I better meet back up with mom so that we could call the Uber driver.  I called.  She didn't answer.  I called again, she didn't answer.  Repeat this several times.  Finally, after walking the boardwalk twice, we decided to check behind some of the buildings.  There she sat.  Just chillin on a bench, phone in her purse, oblivious to the fact that it had been ringing off the hook.  So after the troops were rounded up, I sent for the Uber driver, where immediately after, my phone dies, and we miss our ride.  I'm gonna make this long story short, and cut out how mad I was, and just sum it up by saying I downloaded Uber onto Ashlynne's phone and got another ride.  She, of course, rubs it in my face by saying with a smug smile, "Aren't you glad you finally got me that smart phone?".  Good point, Ashlynne.

But the actual conference was amazing, as always.  I don't think these things can be bad.  Once every two years, these kids, and adults, get to see other people that not only look like them, but that also know exactly what they go through, both physically, and socially.  That's a lot for me to wrap my head around.  I can't imaging how isolating that must feel during those in between times.  So it is during these conferences that I see my child, and others, thrive.  I see their guards let down, and it is their time to shine.  I never leave without shedding my body weight in tears.  It warms my heart to know that the FIRST Foundation has created a safe place for these kids.  I don't know if the women of this organization realize how much they have changed all of our lives.  They pour their blood, sweat, and tears into these conferences, and an organization, and none of them have ichthyosis, nor do they have any family members that have it.  That is dedication.  They provide us with resources, samples, genetic diagnoses, and support that we wouldn't have without them.  So Jean, Chris, Moureen, Mo, Lisa, and Madeline, thank you so much.  Thank for you changing our kids lives, and giving them hope, a safe place, and a network of support that they never would have had without you.  You are our Angels!  No words can express what you have done for our family.  So I will leave you with this, smiles from two of the most beautiful people I know, and just two of the lives you have changed with your work!  Love to you all!

Ashlynne and Bailey, waiting for Grandma to
return on the trolley

1 comment:

  1. Nice to read your story. We hope to be at the next conference. Sabine


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