Monday, November 28, 2016

Why I chose to leave my corporate salon job


"If your dreams don't scare you, they aren't big enough."  This is a quote I have sworn by since the first time I heard it a few years ago.  And I finally took the leap to stop letting fear hold me back. 

In October, I left my corporate salon job that I had had for 13+ years.  And I had never been more terrified or excited for anything in my life.  There was so much doubt nagging in the back of my mind.  But as I sat down and weighed the pros and cons, I decided to take the leap of faith, and believe in myself.  I had worked hard over the last 14 years to build my skills, and my clientele to eventually be able to fulfill this dream, so if not now, when?

I worked for the largest salon corporation in the country (I don't think I can say the name of the corporation since I no longer work there, but it shares a name with a famous talk show host).  This job had been a very good job for me.  It was my first stylist job out of beauty school.  At first, I just thought of it as a starting out place, but then, the longer I stayed, the harder it was to leave.  There was always heavy traffic, with a high amount of walk ins, essential for building a clientele.  They provided all of the advertising, and paid for many of my supplies and tools.  It had funded vacations, new cars, I had bought my first home with it, and it had fed and clothed my children, and myself.  I started out as a stylist, and worked my way up to management.  When I was single, relying on only one income, I still never had to worry where our next meal was going to come from, or how I was going to pay for Christmas.  My children and I always had what we needed, and what we wanted, because of the opportunities provided to me by this job.  I never had to work a 2nd or 3rd job like most new stylists, or even seasoned ones have to do.  I was able to make it work off of this one job, and have extras left over.  But this didn't come without sacrifice either.  I worked in a high traffic mall, therefore, retail hours were required.  There were many nights I worked until 9 PM or later.  Years of weekends were worked, where I missed out on weddings, graduations, and other family functions.  Extended hours were required during the holidays, as we were in a high traffic retail mall.  And being manager, they were even more strict with my hours than if I had been a just a stylist. 

But the stress was overwhelming.  The rules were constantly changing.  They were always switching things up to stay on top of the game.  There was always a new initiative for the stylists and management.  When I was younger, and fresh in the industry, this was ok.  But after 14 years of being in the industry, I had proven myself.  I wanted more freedom.  I was tired of the rules always changing.  I was tired of the corporate chain of command.  I was tired of someone always questioning whether my best was good enough.  I was tired of feeling like just a number.  I was tired of commuting an hour a day.  I was tired.  Then one day,  after an especially trying time period at work, my friend told me a salon in town was for sale.

I made the choice to go look at it.  Looking wouldn't hurt anything.  The owner was wanting to retire, but still work.  It was a turn key operation.  The stylists were staying.  And the location was perfect.  If I was ever going to leave where I was at, this was the best possible scenario in which to do it.  I decided as long as the doors kept opening, I was going to keep walking through them.  My feet might have been shaking the whole way, but I kept pushing forward.  As soon as I made the offer, and we signed the contract, I left my job, and started working at what would be my new salon once the closing date arrived.  I was terrified.

But now I am asking myself why I didn't do this years ago.  It is such a laid back environment, and I found an amazing mentor in the current owner.  She has made this salon a success for many years, so I will be picking her brain as often as she will let me!  So many of my loyal clients have followed.  Some that, quite honestly, surprised me.  Several of them have told me it is easier for them to drive 60 miles roundtrip every 6 weeks than it is for me to do it every day.  And I have gained new customers, people that would have come to me before, but couldn't find the time to squeeze that drive into their already busy schedule.  I am off by 6 at night.  No more nights of missing tucking my kids into bed.  I am off by 4 on Saturdays, and am off on holidays.  My stress level is down, and my whole life is better for it.  And I'm matching the money I was making at my previous job.  I miss the group at my old salon.  We were like a family, but I'm doing my best to stay in touch, as are they. 

I am not in any way knocking the corporate salons.  I think they are a great place for people to start their careers, and for some, can make a great lifetime career.  I made one of these salons a home away from home for nearly 14 years, and it afforded me some really great opportunities, and introduced me to some of the best people I know.  But for me, it was time to move on.  So as I set out to pursue my crazy, scary dreams, and we approach closing day, I am less terrified, and more excited.  I made the decision to no longer let my fear stand in the way of my dreams.  And I encourage each and every one of you to do the same.  Whether it's with your career, your personal life, or marking something off of your bucket list, go out and do something that scares you today.  It just might pay out abundantly.

Thursday, October 6, 2016

Johnny's Journey - the blog from the dog

I'm the king of the castle
Here is an update from Johnny himself (if he had opposable thumbs and could type, or talk):


I've been at my new home in Kansas for almost two months now.  It only took me a couple of days to adapt, then I realized I run this new house of mine, and the humans that live here.  My human mom loves me very much, and she spoils me very much.  I pretended to be very shy at first, this is how I roped her in, and once I realized I owned her, I let my personality shine, the good and the bad.  I have become much more vocal, and like to show off my barking ability.  I'm very good at it.  It's one of my many talents.  The ability to bite with no warning is also something I am very good at, although I do this less now that they know I am in charge.  I am very sweet after a good bite though.  Like a sour patch kid.  I am also very good at chewing things up, like entire rolls of toilet paper.  I like to unravel it.  It provides me much entertainment.

It took me some time to warm up to my human sister that has Ichthyosis like I do, but now that I have, I think she is my 2nd favorite human, next to my new mom.  She really loves me, and she talks to me in a funny voice.  I like that.  So I bark, and wag my tail to show her I like it.  Then I lick her.  A lot.

I'm very picky about what I like and what I don't like.  My family is starting to figure all of these things out.  I like to let them in on a few things daily.

Here is a list of some of my likes and dislikes:

Likes:
*My humans- especially my mom
*My human sister's lotions- I like to lick her lotions after she gets out of the bath.  Her skin is like mine :)
*Treats
*My other animal roommates- especially my other dog, I like to bark at her to get her to play with me
*My grandma- I don't even bark at her, and I really like to bark
*Tug of War
*Long walks on my leash- I'm thinking of putting this on my dating profile
*My t-shirts- I am very cute in these! I was already very cute, but now I have accessories.


Dislikes:
*Shoes- I'm fine with sandals, I just really don't like tennis shoes, and I will try to bite them if you walk by me with them on your feet. I bark until they go away.
*The hairdryer- I bark the whole time my mom is using this.  I haven't decided if it's because I don't like the noise, or I just don't like her doing anything other than playing with me.  So I just bark until it stops.
*My human brother- he needs to realize that I am in charge... he will get there. So I bark at him
*My baths and lotions- do we really have to do these every day?  I have stopped biting mom during them though.  I decided after eight times of getting her good, if she hadn't stopped yet, she wasn't going to.
Here is a picture of my dog sister and I,
she's ok, I guess.
*Kansas thunderstorms- they are very loud, and keep me up at night.  They rattle the windows, this makes me bark.
*Tornado sirens- my mom gets nervous when these go off, so I bark.
*When people walk down the sidewalk in front of my house- this is my house, so I bark.
*My mom's debit card- I didn't like it, so I pulled it out of her purse, and chewed it up.  When I was done, I barked, to show her what I did.  She yelled, I barked again.

I will continue to add more to my lists as I expirience new things.  They have warned me about cold, wet stuff they call snow, that we did not have in California.  They say that it will be coming soon.  Also, the falling leaves, mom says I will have fun with this.  But right now I must go. I see that my mom's lap is empty, and I must get there before the other dog or small humans, or they will claim my spot on my throne.

Goodbye for now,
John Feathertail.

(a footnote from Cora)

After having Johnny in our family for two months now, he has fit right in, and become a huge part of our lives.  I can not imagine life without him.  I want to personally thank Rick, at Nobody's Perfekt Dogs for trusting our family with one of his dogs.  He's not "just a dog" to us.  Rick takes in a lot of special needs dogs, like Johnny.  If you feel compelled to make a donation to help another dog like Johnny, please click above, where you can donate on their website. 

We will continue to update you on Johnny and Ashlynne's journey through life with ichthyosis.  Thanks for reading!

Also, imagine the entire above dialog from Johnny in a slightly spanish accent, it's the chihuahua in him :)

Sunday, August 28, 2016

Why I'm glad my son finished last

We are a very busy family, and it seems we are always adding things to our plate.  I'm always all for the kids trying new activities, as exhausting as it may be.  For some time now, my son has been racing 4 wheelers with his friends, and has gone to the sand dunes on 4 wheeler trips, but today, he raced in his first official race.  He finished last.  And I'm glad.

Why am I glad?  Because look at that phrase "he finished last", and focus on that second word... "finished". He finished. 

Let me backtrack.  He and my husband got up and left before the rest of us.  I was running late, because I was searching for the bag chairs that our garage seems to have eaten.  I was rushing to get there by 10:30, the start time.  He was the 3rd race, so I had some leeway if I was a little late (which I chronically tend to be).  By 10:30 I got the phone call from my husband that I missed his first heat.  My heart instantly sank, I so badly wanted to be there on time to cheer him on.  Then, he proceeds to tell me that Gavin popped a wheelie, rode it out for about 5 feet, then flipped over backwards, he was ok, but complaining about his back.  The medics checked him out and told him that he would be a little sore, but would be ok.  I was then slightly relieved that I missed it, knowing my mom-stincts would kick in and I probably would have panicked had I seen it. 

When I got there, he was laying next to the truck with ice on his back, saying he wasn't going back out on the track.  There might have been a certain amount of drama involved in this, but it is hell knowing that your child is in pain, and you can't fix it.  The protective side of me wanted to say ok, and pack his stuff up.  But then I got myself in check.  I swallowed that fear of him getting hurt, and told him he was getting back on that quad, because we aren't quitters.  He was SO MAD.  He said fine, he would run in his next heat, but that this weekend was going to be his first and last race.  From now on, he just wants to ride for fun, and this wasn't fun.  His attitude continued to decline as he realized I wasn't backing down, and he was going to compete in his 2nd race. 

In all of the time that he has ridden 4 wheelers, he had never had a wreck.  We knew at some point in time it would come, and with the more confidence he gained in riding, and the faster he went, the worse the wreck would be.  I consider myself and him lucky that he hadn't gotten up to speed.  I'm glad he got that first wreck under his belt, and I'm also glad I wasn't there to witness it! But I know how easily he scares, and I knew this wreck was going to scare him from keeping on with something he loved.  If I let it.  And I wasn't going to let him quit.  Not until he at least knew what it felt like to cross that finish line.  If he still felt like it wasn't for him, we didn't have to do it again, but he was going to cross that line.

When the time to suit up came, he was so uncooperative, that my husband practically had to get him dressed in his chest protector, boots, and helmet, all the while, reminding me he wouldn't be doing this again.  He got on the quad, and rode to the gates, with words of encouragement from both of us. Just finish the race, buddy.  I reminded him he didn't have to come in first, just get to that checkered flag.  As he was lining up, I could see the nerves and fear in his eyes, and tried not to let him see it in mine.  The gates went down, everyone took off, and there he sat.  He killed the engine.  He got it started, went a few feet, killed it again.  I knew what he was doing, he was scared to give it too much gas and flip it over again.  Third time was a charm, and he took off.  Very slowly.  But he took off.  He rode around the first jump, rode over the next one very slowly, and started to pick up speed a little speed the further he rode.  By the fourth, and final lap, he was starting to actually jump some of the jumps and finally got all 4 wheels off the ground.  And he came in dead last.  By a long shot. 

And I have never been more proud of him.

You see, he was terrified to get back out on that track.  But he did.  And he did it with a huge smile on his face.  He was as proud of himself as I was of him.  He pushed through, and did something that scared him, and he didn't walk away from it because it felt uncomfortable.  And once he crossed that finish line, he proved to himself that he could do something that he thought he couldn't.  I chose not to look at it like he "lost the race".  He may not have come in first, he came in last, but he didn't lose, it was a win for him to get through it.  Not giving up paid off for him.  Huge life lesson learned.  And a pretty proud mom moment for me.  It was his first time out.  And because it was his first time out, I knew that if he didn't get out there again, he never would.  And he did it.  HE DID IT!  Coming in last was nothing to be ashamed of. 

Look at that smile, and all of that glorious boy dirt!
There was no trophy, and there was no participation metal or ribbon, but there was this:  Other riders in his heat came up and congratulated him on finishing his first race, and assured him that he did great for his first time out and for his age (he was racing against 14-16 year olds), and made sure that he was ok after his spill in the first heat.  Over and over again, he kept hearing, "But you got back out there and finished, and that's what matters", and "Good job, man!"  I think that made him feel much better, and less embarrassed about how he started out, and definitely eased the nerves about future races when he saw how nice and welcoming this racing community is.  That sense of pride, and accomplishment is better than any medal he could have gotten just for showing up.  Oh, and miraculously, his back felt so much better after his 2nd race, and he thinks he might give it another shot at the next race in two weeks.

Friday, August 12, 2016

Heeeeeere's Johnny!!!

I belong to several Ichthyosis support type groups on Facebook.  So sometimes, I scroll past some of the random posts that pop up from them.  But one day I could help but take a pause over one of the posts I saw with the cutest little puppy on it.  The owner of a rescue group in California had reached out to an ichthyosis contact of his in hope of getting help finding a forever home for a little guy they had taken into their group named Johnny, with a form of canine ichthyosis.  I read through it, smiling at the pictures thinking they would have no problem finding a forever home for this cute little guy.  I just didn't think it was going to be with us.

The picture that stole my heart
About a week later, I revisited the post, just curious to see if they had found a loving home for him.  They hadn't.  And even worse, Ashlynne had seen the post.  This was bad news for me.  See, it combined two of my biggest loves:  my ichtyosis community, and my love for animals.  It broke my heard that no one wanted this little guy simply because he had the same genetic disorder that my Ashlynne has.  So I inquired, figuring there was no harm in just checking into it, and I put it out there to Russ, who wasn't completely opposed, but he had the same question I did.  How were we going to get this dog all the way from California to Kansas?  I had just left California from the Ichthyosis conference, and he couldn't take any time off of work right now.  Unbeknownst to us, Ashlynne had taken it upon herself to inquire as well.  She had gotten the phone number off of their website, and called them herself.  She was disappointed when the man told her that just that morning, Johnny might have been spoken for.  But her disappointment turned to joy when the man on the other end of the phone told her that the man that had called asking about Johnny was named Russ.  She came running downstairs yelling that "Pops" had called the rescue group and asked about Johnny.  "He's going to let me get him!"

We explained to her the logistics of it all, about getting him here, and also the fact that the rescue group preferred a couple of overnight visits with the adoptive family to see if it was a good fit.  All of this was going to be very hard considering we were half way across the country.  She begged and pleaded, she promised she would help take care of him (I know, I know, all kids promise to help take care of the puppy they want), and he was JUST like her (her words, not mine).  And as we were discussing it, I hear from the other room, from what I thought was a sleeping Breckyn, "heeeeeeere's Johnny!".  Mic drop.  How does this kid even know that line?

So we contacted Nobody's Perfekt Dogs and pleaded our case.  We explained the situation with Ashlynne, and explained my immense love for animals, and the man decided it was worth giving us a shot. And at the end of August, he would be bringing his son this way on his way back to college, and he could meet us just three hours from our home.  It was all falling into place.  How could Russ say no now? Game over.

So on August 19, we will be welcoming Johnny, a cocker spaniel/Chihuahua mix, into our home.  I'm so excited for our next venture, and will be sharing plenty of Johnny stories with you all along the way.  I just hope Zailey can adjust to not being the only dog in the house again!  Russ and I have always said that if we ever heard of a baby that was up for adoption with ichthyosis, we would try to adopt the child.  We just never dreamed it would be a fur baby.  Johnny's skin regime will be much different that Ashlynne's, considering applying lotion all over his body, and soaking him in the tub for an hour and a half a day isn't really an option.  So we will apply ointment to his eyes, and a vitamin A supplement in his food, along with weekly medicated baths.  I will also apply Vaseline to his paws, which gave me an excuse to buy him some cute little booties.  I had decided in March, after our Hurley passed away, that once Zailey passed, I would never own another dog.  They just break your heart, they don't outlive you.  But it looks like God had other plans for our family!  I think Johnny will be the "perfekt" fit for us!

Look at this face!!  How can you resist?!
I think this is going to be one spoiled pooch!

Monday, August 1, 2016

To my sweet baby girl, as you start kindergarten

To my sweet, sweet baby as you get ready to start kindergarten,

Breckyn's pre-school graduation
It can't be time.  How can this be possible.  You are the baby.  Time wasn't supposed to go this fast with you.  I know it sounds so cliché, but it seems like just yesterday we brought you into this world.  Where has the last 5 years gone?  With your older siblings, I was excited for this milestone for them, and for you, I am just sad.  Because I look back and once they started kindergarten, time just flew by.  Everyone warned me, but you can never really fathom how fast it goes until you are in the throes of motherhood.  Now, your sister is starting her last year of middle school, and your brother, his last year of elementary school.  And before long, that will be you.  I promised myself with you, I wasn't going to make the same mistakes I made with them.  I was going to stop and enjoy the little things.  I wasn't going to be too busy to play board games.  I wasn't going to take the little moments that are fleeting, for granted.  I was going to soak up these years before you start conquering the world.  I was going to stop and smell the roses, per se.  I did.  And it still flew by too fast. 

I know you are busy, but will you please take just a second to crawl onto my lap and cuddle? Will you please just humor me?  I know you have things to do, and I know you want to go outside and play with your friends, but I just need a moment.  I want to kiss your baby soft cheeks.  I want to hold you until you fall asleep.  I want to listen to the soothing sound of you breathing.  I want to give you butterfly kisses, and hear that innocent, unapologetic laugh.  Because before long, the nights on the couch watching Nick Jr. will be replaced by sleepovers with friends, boys, school dances, and you hanging out in your room, rather than with Mommy. 

Most would say you are my karma, my mini-me, my payback.  Papa would say you are exactly like me at your age.  Maybe that's why I understand you so well, why I seem to "get it".  I want you to understand that all of those days, where I seemed frustrated, and where I was lucky to even get in the shower, I treasured those days too.  I am so grateful for every moment I get with you.  Don't get me wrong, your strong will has pushed me to the brink of insanity, but I wouldn't trade it for the world.  I know that some day, the house will seem to empty when I am not yelling at you to pick up your shoes, or tear down the blanket fort you have left up in the dining room for 2 days.  And the thought of those days haunts me.  For I know that it is on the horizon. 

You are my fashionista, my diva.  I know we will fight about what you are wearing, and letting me do your hair.  I know you will want to do it yourself.  I know we will fight about you getting up in the morning, and you will beg me for your signature "5 more minutes".  And I know this will continue through your teenage years.  I know this is exciting for you, and I want this for you.  This is natural.  But please be patient with me if I am a little sad.  If you are prepared, I am doing my job.  This is what I was put on this earth to do, to be a mom to you and your brothers and sister.  To prepare you for this big, crazy, sometimes very scary world.  I will try to put on a smile when you are modeling your new school clothes, and your new book bag, and at times, it will be a genuine smile.  But this is so bittersweet.  Before long you won't need me, but it is my hope that one day you will want me. 

Here are my hopes for you:  I hope no one ever clips your wings.  Fly baby girl.  You are my free spirit, my wild child.  But remember, not all who wander are lost.  Let that free spirit of yours guide you through great adventures in this life.  I hope you explore every inch of this world possible!  I hope you accomplish all you set out to do in this life.  I hope use your strong will for good.  You always seem to have a twinkle in your eye, I hope you never lose that.  I hope you always stand up for what is right or wrong.  I hope you are kind.  I hope I have set a good example of that.  I hope you are happy.  I hope you find your passion, and I hope you chase it, along with your dreams.  I hope that one day, you will experience the love I have for you, when you look into the eyes of your own baby, and see a reflection of the child you once were.  But most of all, I hope you know that I have poured every ounce of love I have, every fiber of my being, into being your mommy.  And I hope that you understand, that no matter how many years pass, you will always be my baby.   

Love Always,
Your Mommy

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


Thursday, June 23, 2016

F.I.R.S.T. National Family Conference 2016- Day 1


And we're off!!
Well, last night my mom, the kids, and I started out for our third trip to the FIRST Family Conference. The bi-annual conference takes turns where it is hosted, this year being held in San Diego. Normally we drive, and just make a vacation of it on the way, but there was no way I was going to attempt this drive knowing I would have to be doing a majority of the driving. So Delta it was!

The first leg of our trip has been pretty uneventful so far. We had to be up and at the airport for our 7 AM flight out of Kansas City. It was Gavin's first trip on an airplane, so sleep seemed to evade him, and the giggling prevented me from getting much sleep. I was a little worried about how Mom would maneuver through all of the crowds and the airport with her leg since her accident, but she kept up pretty well! The only thing rough about the flight was the gas that someone was nice enough to keep sharing with the rest of us. By the end of the flight my senses were so offended, I think I had gotten used to the smell. Apparently it wasn't turbulence, so much as flatulence we needed to be concerned with.

After being stuck on the tarmac for over 45 minutes when they told us it would be about 5 minutes before we could taxi, my back teeth were floating, and my kiddos set foot in California for the first time. During our 3 1/2 hour layover in LA, during which we could have driven to San Diego, they entertained themselves by seeing if they could spot any celebrities... mostly the YouTube stars they follow. No luck. I told them they were lucky enough to be in my presence every day. That, however, didn't seem to cut it. But, after 20 minutes in the air, we landed safe and sound in San Diego.  We hopped in a cab, where I'm 99% sure I saw the cab driver eat his own booger, and headed to the Mariott, where we were greeted instantly with friends, lots of friends!  Many we keep in regular contact with, but others we hadn't seen or talked to in two years. It's like a giant family reunion! Except without the hidden drama
The view from my balcony for the next 4 days

It takes me back to the first FIRST conference we attended in Denver 4 years ago, when I saw Ashlynne actually be herself for the first time outside of our home. I had never seen my child so relaxed around people as she was that week, and we get to revisit that feeling every two years. Once again, I see my kid at peace, I feel supported, in the presence of other parents watching their kiddos struggle, and in just a few hours, it will all officially begin when the registration reception starts.

The classes are always so informative, and very often pretty emotional. I love everything I get out of these gatherings. They feel less like a "conference", and more like a class reunion, or a gathering among family and friends where we throw in some medical advice, and a whole lot of support. I so love this family that we have all formed, and am so excited to see what this year holds for us, and what new connections we make! !

We are patiently waiting for Jordan (aka, Sister Salmon) and Sadie to show up, but it's hard to wait to get my hands on my precious little "niece". So we are trying our best to kill time. So far, the kids have found the pool and hot tub, a killer pizza restaurant, and of course, a gift shop, and I have stained one pillow with my fresh hair color. I will be posting more updates along the way, with many shennanigans to follow (I'm sure!). I have joked several times that we will see if either my mom, or I, comes back from this alive after traveling with the kids, and spending this much time in a hotel room together... because chances are, only one of us will make it out unmaimed! So hang around and I guess you will see!  Stay tuned, folks!