To my "little girl" on her 18th birthday...

My dear, sweet Ashlynne,

 Eighteen.  Legally an adult.  Always my baby.

Bear with me as I navigate this land of trying to figure out how to be a parent to an adult child.  I don't know how to do this.  I don't know how good I will be at this whole "parenting an adult" thing.  But keep in mind, you will always be my child. There will probably be plenty of times you have to remind me that you are becoming an adult.  But remember, I might have a hard time wrapping my head and heart around that.  I will always be your mom.  I took the pregnancy test.  I announced you were coming into this world.  I am the first person that heard your heartbeat.  I got the morning sickness, the swollen ankles.  I felt your first movements.  I felt your first hiccups.  I grew as you grew.  I have the scar from your cesarian.  I have grown up right along with you.  I felt the pain as you came into this world, and the joy simultaneously.  And I felt the pain when they took you away, and I sat in your NICU room and cried.  You see, today, you legally become an adult, a woman.  But to me, you will always be that little baby fighting for her life, and showing the world what strength really is.  

I feel like my days of guiding you are limited.  I hope I am wrong.  I hope you always want your mom's advice.  But just in case, there are some things that are really important in life.  A few things I need to say. Some things I wish I would have known.  Some things that really matter.  Here they are:

*Put God first.  He will never steer you wrong.  When you have that gut feeling that you think you should follow, that's Him.  Just listen. And when you think He isn't there, He is.  Have faith.

*Don't chase them.  Boys, friends, family members, anyone.  Don't chase them.  For if they are worth chasing, you won't have to chase them.  What you will have to do is put in effort.  Relationships of all kinds take effort from both sides, but not all the effort from one side.  If they slip through your fingers, but are meant to have a permanent place in your life, they will come back.  And they will appreciate you even more than before.

*Be teachable.  If you know a million things, you can still learn from the person that only knows one thing.  Believe it or not, we aren't always right.  Be prepared to listen, and hear people out.  Knowledge is more than booksmarts.  And once you leave the realm of high school, this becomes more apparent.  Lessons are to be learned in everything.

*Don't take yourself too seriously.  If you don't laugh at yourself, they will laugh at you.  You might as well beat them to the punch.

*Not everyone will like you.  And that's ok.   Because you won't like everyone.  Find your tribe, love them hard.  It is literally impossible to be friends with everyone.  It is quality over quantity.  I would rather have a few really good friends, than a lot of people around me that I can't form a deep connection with.

One of the best scenarios in life, I heard recently from a good friend.  I will try to do the comparison justice as I retell it.  As we sat on the porch one night she said to me:  Life is like a tree.  You are the trunk.  Some people in your life are the branches.  These are the people that stay.  These are the monumental people in your life that have the most impact, and will never leave you until the day they die.  Other people, they are like leaves.  When a big gust of wind comes along, or the seasons change, they are gone.  They are the friends and relationships that are there for a little bit, maybe when things are good, and fun, but when a storm, or winter comes along, they shed themselves.  But those branches, they stay.  They are still there next year, even when the new leaves come.  You see, trees shed their leaves, and that's part of life, most branches stay intact for a really long time. but some of those branches, they are there for life.  Those branches are the ones you prune, and the ones you take care of, those are the ones that really make the tree beautiful.  

*Call your mom.  When you're sad.  When you're happy.  When you have exciting news.  When you are bored.  Call your mom.  I will never tire of hearing your voice.

You, my love, are one of the things I am most proud of in this life.  If I have done anything worthwhile in this, being a mom is at the top of that list. You are funny, and witty, and kind.  You love animals, and the elderly, and your family.  You love Pearl Jam.  The rest of your music taste could use some tweaking, but we have time to work on that.  But most importantly, you are STRONG.  You are a fighter.  I was just telling the story tonight of when you took your first steps.  Two and half years old, he picked you up out of my arms, and set you in the middle of the room, and told me not to run to you.  And you walked to me.  For the first time.  Crying, and scared, but you made it.  You made it across that room to the one place you felt safe.  I will always be your safe place.  You can always come to me.  No judgements, no I told you so's.  Only love, acceptance, and safety.  Believe it or not, I am still growing with you.  I still feel you.  I still hurt when you hurt.  That didn't stop the day you were born, it had only just begun.

I love you.  Happy birthday young lady.

Love, 

Mom

Ichthyosis Awareness month 2019- how I am feeling after 16 years of my child's diagnosis

To the parents with a child with special needs,

I want you to know.  It's ok.  If you don't feel like you can be the face of your child's disease, or if you do feel you can, it's ok.  Either way, you're doing a good job.

Today is May 1, which kicks off Ichthyosis awareness month each year.  This is the time of year where I am supposed to use my voice and educate the world about Ichthyosis, and how it affects my daughter and my family.  This is where I'm supposed to tell you that the skin is the largest organ in the body, and its main functions include acting as a barrier against heat and infection, and protecting the body's organs from everything outside.  And when the skin doesn't function properly, it puts everything at risk.  This is where I'm supposed to tell you that ichthyosis, my daughter's skin disorder, is more than "just a skin disorder" and it has affected everything about the normal life that I pictured for her.  But I don't want to.

Ashlynne is 16, and I'm just in a period in her life, and mine, where sometimes, I just don't feel like explaining everything.  Sometimes, in my head, in want to scream "IT'S NOT MY JOB TO TEACH PEOPLE THINGS!".  I'm at a point in my life, where I just want to see my daughter live as close to a normal life as possible.  And sometimes, I get tired of ichthyosis being in the way of certain things.

I know I normally try to stay pretty positive about things, but this has been a tough year.  When you have a special needs child, from the time they are born, people are constantly telling you to let them know if you need anything, or if there is anything they can do to help, to let the know.  But the truth is, in the beginning, you don't know what you need, or what would help. And now I'm at the point where, when people say those things, I want to reply "can you make my kid wear her back brace?", because she has been diagnosed with scoliosis on top of everything else.  Or better yet, I want to say "can you just make this all go away, can you cure her?", but that's not fair either.  So I say thank you, and we move on.  The truth of the matter is, no one can really do anything to help, other than be there to support her.  Other than the doctors, who are working vigorously trying to find a cure or treatment, no one can really do anything other than be our friends, and listen when we are mad, and angry, and cheer with us when we have little victories.  And we have that.  I am so grateful that we are lucky enough to have that. Without my support system, I don't know where Ashlynne and I would be.

I know this is the part where I am supposed to be encouraging new moms who might be learning about ichthyosis, or any other disorder or disease they had never heard of until their child was diagnosed.  And I will tell you this, you will get through it.  There will be better days ahead.  You will have days where you barely even think about your child's diagnosis, and you will get a glimpse of a "normal" life.  But there will also be other days where you feel like you're drowning and you see your life raft floating further away.  But you will get through it.  You will.  Some days will be easier than others, but your love for your child will get you through even your darkest days.  And that is it.  That is literally the only thing that can sustain you through those hard days.  Nothing else I can say or do will even come close to fixing any of it.  Your love for you child is your life raft.

I have my days where I am really positive and upbeat.  Today just isn't one of them.  Today is me just being real with you.  Tonight, I am going live with Ashlynne on facebook and instagram to answer some questions, and to let you all see her, and her awesome personality.  But right now, this is just me. being raw. telling you we all have our days.  We all have our days where we just feel jaded, and don't have the energy to teach the world about our normal.  Next month, we will be filming a documentary about ichthyosis with a production company, and on that day, I will bring my A game, and I will do as much educating as I can.  But I will tell you this, Ashlynne is the one spreading awareness, not me.  Ashlynne spreads awareness with her joy, and her love for life, and her love for

Ashlynne, and part of her support group on her
prom day.  No one messes with her with this
crew around!

people.

So I will tell you this about ichthyosis:  it affects everything about one's skin functions, therefore affecting everything about the life of a person that lives with it.  It affects physical, emotional, and social aspects of just about everything that a person goes through.  My child has been lucky enough to have some great friends and family that has always made sure she has had as close to a normal life as possible, but it's the strangers that exhaust me.  The physical is scary, the times when we didn't know what was next for her, health wise.  The times that I was watching an infection closely, wondering if it would land us in the hospital, or the times that I would be scared to even take her to the store, because the walk from the car held a huge risk of her overheating, those times were scary.  But the social interactions are what are the most frustrating.  Her being made to feel different by complete strangers, and by people she has known her whole life, has been the hardest part of her disease.

So that brings up why we are here today.  Raising awareness, so that socially, things are easier for our kids.  Raising awareness so that people don't get kicked off of planes for having ichthyosis, or don't get stared at, open mouthed, at Walmart when they are just trying to look at makeup.  I get asked constantly how I would prefer people approach us if they have questions, or if they want to know more.  My answer is this:  just be a decent human being.  Don't stare, don't walk up and ask my what is wrong with my kid, don't snap pics of her when you see her in a store, don't lecture her about her sunburn.  Don't leave her out of things just because you don't know how to approach her.  Don't treat her any different.  Treat her like you would treat anyone else.  Be a decent human being.  Smile at her.  Ask her her name.  Get to know her.  If you do that, you will get to know about ichthyosis.

F.I.R.S.T. National Family Conference 2018

Every two years, F.I.R.S.T. holds a national family conference for families affected by Ichthyosis.  This year, we got to take on Nashville, TN.

We drove the whole way, which was quite the cramped road trip.  I, being the wanderer that I am, wanted to stop and sightsee.  You know, a lot of my childhood memories on vacation were made on the journey, not once we reached the destination.  Russ, on the other hand, was on a mission to get there, and get out of the truck.  So, since he was behind the wheel, straight to Nashville it was...

This was a first for the Cossel family.  Our first time spending any time in Nashville, and also our first time taking all four kids to the conference.  In the past, we have just taken the older two.  To be honest, I was a little worried about taking the "littles", as we call them.  At 7 and 9, I wondered how much they would really understand.  Does Breckyn even look at her sister and realize she's different?  Would she recognize these other kids as having the same skin disorder her sister does?  Would she understand that different severities of the condition?  Does Logan, who IDOLIZES Ashlynne, notice how much of our lives Ashlynne's ichthyosis affects?  Or does he just think this is normal?  I really thought this would be a profound experience for them... And it wasn't.

I don't mean that in a bad way.  I mean it in a perfectly beautiful way.  My children didn't shy away from the other kids at the conference.  In fact, both of them gravitated towards the kids with ichthyosis, rather than the kids without.  I think they saw the beautiful souls in these children.  I think kids see past all of the things that adults get hung up on.  And this weekend just drove that point home for me.  This was just a weekend, in a really cool hotel, with a pool, a dance, and a bunch of new friends.  In fact, it kind of worried me some with Breckyn. She met a little friend, Brenna, who is merely a few months younger than her, only much smaller because of her ichthyosis, and Breckyn kept trying to pick her up and carry her everywhere.  Brenna eventually let her know that she was over it, after many attempts of me trying to get her to stop.  Breckyn didn't hesitate to touch, and love on these other kiddos.  She threw all caution out of the window and was just Breckyn.  And Logan, he met a new best friend, Miles, who has the same type of Ichthyosis as Ashlynne.  He loved how much Miles looks like his sister.


Part of "The Squad"

Ashlynne and Gavin, however, reconnected with a bunch of old friends, which they named "the Squad".  This group of teens and preteens was practically inseparable all weekend, and had some pretty interesting stories for all of us.  I walked up to the table they were all sitting at one point, and they were all texting each other in their group chat from across the table.... I guess it's a millennial thing... But I get the feeling the "squad" will do a great job keeping in touch, and making more memories.  They also sat on the panel of a teen panel, where parents and younger kids could pick their brain about growing up with Ichthyosis.  I was so proud of them for answering questions honestly, and in front of a large group of people.  This was something a few years ago I never would have seen Ashlynne doing.  These are her people, and this is where she feels most comfortable.  I feel like these conferences "recharge" her to be able to get her through the next couple of years of life. 

Jordan has become one of my best

friends.  I couldn't do life without

her!!

The highlight of the conference is always the talent show and dance that is held Saturday evening.  These kiddos, that are normally shy, and hiding behind their parents because they are tired of the stares, or afraid of not fitting in, get to get behind a microphone, or a piano, and shine.  I normally start crying before the singing even starts.  Their bravery, and pure talent amazes me.  I wish I was half the person that most of these kiddos are.  They inspire me, every single day of my life.  At the Saturday night festivities, we also got to meet baby Anna.  Her mom has a blog, and a facebook page, Hope for Anna, and she is the most stylish, sweet little baby you could ever see!  Ashlynne was in heaven getting to hold her and play with her.  I think it seriously put the cherry on top of the conference for her! 

For me, it was a much needed family reunion with my "second family".  The relationships that I have formed with these other moms, dads, and children, as well as faculty and staff are irreplaceable.  They get it.  We get to share our anger, and bitterness for what the world has thrown at us, and we get to celebrate our own beautiful.  We get to support each other in this exclusive club, that none of us asked to be in, yet we have grown to love over the years.  These are my people.  These are the ones who keep me going on my bad days.  The ones who I can text, and vent to, because my heart is broken that my daughter can't have a typical teenage experience.  The ones I can call when I don't feel like I can handle yet another doctor's appointment.  These are the ones who cheer me on, because they are right there with me.  Mom's Group, which is held on Saturday, is always a huge release for all of us moms, and definitely my favorite part.  It involves advice from us seasoned moms to the new ones. And when I was in their shoes, it was the best thing that happened to me.  I was able to let it all out.  And continue to do so every year.  But it wasn't all venting and crying.  Good memories are always made.  Maybe a few too many glasses of wine were involved, but nonetheless, there were good times!

Ashlynne, teaching Matt, all about the Nintendo

Switch.  Matt is dad to Calvin, who also has

ichthyosis, as well as younger twins!

In two years, I will get to see these people again face to face.  And I will also meet new families, that like myself 15 years ago, had never even hear the word "ichthyosis".  And new members of this club, that non of asked to be a member of, will join our "family".  Until then, the text messages, face time, and facebook groups will have to get us through.  Saying goodbye is always the hard part.  But we have to say goodbye, to go back into our own corners of the world, and to allow our kids to continue making this world a better place with their absolute awesomeness.

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

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!

Ichthyosis Awareness Month 2016: Ashlynne's point of view

Every year for Ichthyosis Awareness Month I write a blog (or a few) from my perspective.  I write about what Ichthyosis means to me, how it has affected MY life.  But I can't tell you how it feels to be the one that actually lives with it each day.  So I figured, why not go directly to the source? So here is Ashlynne's story, from Ashlynne's perspective.... Enjoy :)

"Hi, my name is Ashlynne and I'm 13 years old.  I have ichthyosis.  I've had ichthyosis my whole life, so I don't really know what it feels like to be normal.  I want to know what it feels like to be normal.

Ichthyosis makes my skin red, dry, and flaky.  It makes it really hard to bend my knees and my arms.  Sometimes my tummy is tight too.  That just depends on the day.  I also get hot a lot easier.  And I can't sweat, so that really sucks because I can't cool myself off.  I don't get to do a lot of things that other kids get to do because I might get too hot, and because I don't bend very well, like Gymnastics.

I don't like having ichthyosis.  I have to take really long baths every night.  I hate to take baths.  And I hate how long they take.  I would rather take showers.  But I don't get to take showers very often because my mom said its not as good for my skin.  And I have to eat a lot because I need a lot of calories for my skin.  My mom is always yelling at me "Eat Eat Eat!", but I'm not always hungry.  I think Ichthyosis keeps me from making some friends.  Like, the popular girls may not want to be friends with me because they don't think I'm as pretty as they are.  I also hate it when people stare at me.  Sometimes when kids stare, their parents don't even do anything about it, and that's just rude.

But there are some good things about having ichthyosis.  I do have some really good friends.  And we get to go to conferences every other year.  This year, we get to go to San Diego!  I'm really excited about that.  At the conferences, I get to meet people like me, and I get to see other people that I already know, like Jordan, Abby, and Bailey.   And some times I get seconds at school lunch.  And also, sometimes, when people stare, I make crazy faces at them, and I know I wouldn't get away with that if I was normal. Someone has to teach them not to stare!  And a couple of weeks ago, there was a show on TLC called "Two in a Million", and that week it was about Ichthyosis.  It was really cool to see people that were like me on TV. 

What I want people to know about me is that I am normal on the inside.  I may look different on the outside, but I'm really just like them.  I have feelings too.  I love my friends, and my family, and my dog and cat.  I'm a big sister, and a good friend.  I like Slim Jims, and doing things that other, normal 13 year old girls do.  I LOVE Miranda Sings, and her husband Joshua David Evans.  They're YouTube stars, if you don't know who they are, go check them out!  I also really love reborn babies.  They are dolls that look very life like.  I like when I am out in public, and I have one of them, people stare at the doll instead of me.  Also, I don't want people to feel sorry for me.  I don't like it when people say "Oh honey, you poor thing!"  That's rude too.  And you shouldn't be rude.  In the words of Joshua David Evans, be nice to people!"

An Open Letter to my daughter, as she becomes a teenager

My sweet baby girl,

I know you're probably rolling your eyes (because by this age you have perfected that so well) at the fact that I just called you that, but that's exactly what you are.  My first baby.  And that's exactly what you'll always be.  I can't believe that my sweet little baby, that I brought home nearly 13 years ago is now entering into her teenage years.  And when you enter those adult years, and become a mother yourself, you will still be just that.  My baby.

I remember bringing you home after two weeks in the NICU, wondering how your life would be.  Wondering if you would even make it to 13, for that was so uncertain at the time.  Wondering if you would struggle more than most.  Wondering if you would have friends, or boyfriends.  Wondering how this big, mean world would treat you.  I had so much anxiety for you for these upcoming years.  Everyone always talks about, and it's no secret, the fact that middle school can be the toughest years of your childhood.  God, I was scared.  But guess what I have figured out?  Your teenage years are going to be freaking awesome!  Because that's exactly what you are... Awesome.  You will approach them with your contagious smile, your amazing sense of humor, and those big blue eyes, taking it all in, just as they have done since the day you came into this world.

While I know that you will take these tough years and make the best of them, like you do most situations, I also want to warn you that you will be facing some tough times ahead.  No one makes it out of these years unscathed, sweet girl.  Even the most ideal of childhoods produce less than ideal memories from this age.  You will fight with your friends, have your first boyfriend, break up with your first boyfriend, lose people you love, experience your first heart break.  And I will be there to hold you as you cry during all of this.  As long as I am walking this earth, I will always be a safe place for you to fall.

I am prepared for the fact that as you grow older, and your social life becomes more important, that movie and snuggle nights with mom will become less cool.  I am well aware of the fact that my opinion won't matter quite as much as it did a few years ago.  I am somewhat prepared for the fact that there may be a time where "I hate you" or other terms of endearment are thrown my way.  Why am I so sure these things are bound to happen?  Because I was 13 once too.  But just as I know they will happen, I also know that some day, you will chose to drive home from college to see me "just because".  I also know that you will beg me for a girls night or weekend.  I also know that you will someday call, crying telling me you're sorry for all of the times you told me you hated me, because you now realize how much I have loved you when you look in the eyes of your own children.  Why do I know this?  Because I have been there too, sweet girl.

The first time I ever held you in my arms.  A moment frozen in time

As each day closes in, I know that you are closer to becoming an adult, and you may not "need" me quite so much.  But I also know that you will some day replace that need with a want.  The more and more independent you become, you will need me less, for a time not want me at all.  But then some day, that pendulum will swing, and you will want me back by your side.  But we aren't there yet.  Right now we are in that transitional period that so many moms have warned me about.  The teenage years are supposed to be as trying, if not more, than the toddler years.  You were a very easy toddler, so I'm keeping my fingers crossed that these teenage years don't break us!  But when you get to the point, and you feel broken, know that I am always here to help put those pieces back together.  Know that I will never let you completely fall apart.  Know that I love you with my whole entire heart.  Know that the first time I held you, was the first time my heart ever felt whole.  And it has been whole every since because of you. 

Please, go easy on me these next few years.  Remember, you are my first child, so being a mom to a teenager is all new to me too.  Let's forge this road, just as we have done all the others: Together.  Remember baby girl, It's us against the world.  Let's take it on.

Love,
Mommy

From the most precious little baby...

To the most spirited young woman I know,

Happy birthday baby!

What you have to know when raising a strong willed child, coming from one herself

I got spoiled with my older kids.  They were so easy, although I didn't realize it at the time.  Last but not least, came Breckyn.

For the past 4 years I have said if B would have been my first child, she would have been my only child.  Being the youngest of four, she has definitely been my challenge, and I guess many would say, my payback.  Time after time since she has been born, I have heard it said that she acts just like me.  And while many days I have felt like I want to either rip my hair out or overdose on happy pills, I can also say that I get her.

Being a very strong willed "child" myself, I can remember some of the frustrations of being a little

Here we have a ruffled sleeve shirt,

some Nike shorts,

and some ballet flats. 

Who says this doesn't go together?

person that has so many rules to follow.  Some of the most common fights can be avoided with her by simply picking my battles.  I have learned I can't put too many restrictions on the choices she gets to make.  One of the most common battles we have had is our morning routine, and deciding what we are going to wear.  I battled this for so long with her, until I finally just gave up.  I remember being younger, and laying out my clothes for the next day and hearing "No Cora, pink and red don't go together", and I've found myself saying very similar things to B in the mornings.  Then I remembered how frustrated I used to get by that.  To me, it didn't matter if it matched, I like the pants, I like the shirt, and I wanted to wear it together.  And today, many times I have heard my sister say that she never would have thought an outfit I bought looked good on the rack, but once I put it all together, she loved it.  Maybe in her mind, B is doing this too.  So one day, I let go.  I just let her wear it.  And the most miraculous thing happened, we had a good morning.  So I decided that's how it would be.  As long as it's weather appropriate, she can wear it.  Who cares if she looks like one of the kids that came out of a Gap Kids ad?  She's happy, and "expressing herself".  She's not hurting anything at all by wearing a pair of rain boots with a Christmas dress.  As of lately, we have been wearing our swimsuits to bed, and guess what?  The world is still on its axis.

I HAVE to answer her.  If  don't, she will just keep at it.  Fighting for her place among 3 siblings, sometimes I think she just wants to know she is important too.  I can't get away with just telling her to wait a second, or ignoring her until I get done with what I'm doing.  She needs to know, and she needs to know now.  It doesn't take that long for me to simply look away from what I am doing and give her an answer.  I don't have to give her exactly what she wants right then, but I do need to give her an answer and acknowledgment of what it is she is saying.  It may not always be the answer she wants, but I have learned that if I at least answer her, the meltdown lessens. 

To piggy back off of that, she needs explanations.  Simply saying "No" won't cut it for her.  It wouldn't have for me at that age, and it still doesn't work for me.  I want to understand reasoning for things.  If there is a reason I should or shouldn't be doing something, I want to understand why.  She is a little person, growing every day towards adulthood, so why shouldn't I help her understand things?  No, I don't cater to her, or bargain with her when she doesn't like the answer, I simply explain why it is the way it is, and most of the time we can just move on.  She simply wants to understand the way of the world, just like most of us (though little does she know, we will never fully understand how most things work the way they do).  Another thing that I can attest to from first hand experience, is that most of those famous Breckyn meltdowns come from frustration.  I know, because I had them, and sometimes still want to!  Strong willed kids are so black and white, that they just don't see why it can't be the way they want it.  You have to take the time to explain things to kids, and that some times things just don't go as planned.  I used to be that mom that would say I didn't understand why people would sit there and explain things to their kids after they had said no.  NO means no, right?  Why sit there and debate over it?  Don't let your kids be in control.  Tell them no, and let that be the end of it.  Well, for some kids, that's enough, but for B it isn't, and it helped me remember that it was never enough for me either.  Explaining isn't letting your child be in control, it's YOU taking control of the situation, and avoiding a meltdown, potentially in a very public place. Help them understand, and remove the frustration.

Pick your battles.  Every once in a while, you just have to give in.  You/I may be busy cleaning house, or getting caught up on binge watching Netflix, but it won't kill to me to stop and put in a Monster High DVD and watch it with her for a few minutes.  Besides, soon she will fall asleep because she has been going a hundred miles a minute all day, and some day, hanging with mom won't be cool.  When she is "bugging" me, hounding me about putting that movie in, what I really need to understand is that she is asking me for a few minutes of my time.  While she might be doing it in a very demanding manner, she is simply wanting me.  The laundry can wait.

On the flip side of that, you also have to be consistent.  You have to stand by your words.  If you say no, for whatever reason, don't go back on that.  If they aren't allowed to play outside for the night, don't give in just because they are pestering you about it.  If you give in once, they will see that, and never forget.  You will forever be pestered about changing your mind, because you've done it before.  Trust me, I know.  I did it.  They can be stubborn, but you have to be more stubborn.  You can win this battle!

My mini-me and I, having the time of our lives

Let them be them.  Don't dampen their spirit.  That strong willed nature, or stubbornness if  you will, will carry them through some down right hard things in life.  That nature may be what gets them through certain things that other people would give up on.  Very rarely will these kids take the easy way out.  They're
going to do something, or finish something, simply because people thought they couldn't.  They are going to try their hardest to prove everyone wrong.  And because of this, they are going to do great things.  These kids grow up to be leaders.  That can be good or bad, depending on how we shape them.  So mold them into something amazing, and they will do their very best to make you proud! 

To the man who just can't keep his comments to himself...

Cutest Bumble Bee I've ever seen!

Recently, Ashlynne had her very first dance recital.  I was on my way back from Texas from Mary Kay Seminar and burned back into town just in time to make it to the recital.  It was a nature themed recital and her class was dressed as bumble bees.  She rocked it out, and was awesome!  She was so proud of herself, as was I.  It takes a lot of guts to get up on a stage, in front of many people you don't know, and perform.  It takes an extra lot of guts to do so when you have a visible difference, and physically you don't move as well and aren't as flexible as the other girls on the stage.  After her performance, where she had A LOT of friends and family, just she and I were walking back to the car, where I was letting her know just how proud of her we all are.

Enter stage right:  The one man who has to make an ignorant comment.

"That's the reddest bumble bee I've ever seen!"

I had to have had the biggest look of disgust on my face.  I didn't respond.  I tried to just keep my conversation with Ashlynne going, hoping she didn't hear him.

"How'd she get such a bad sunburn?"  He was making sure he was being heard.  AND making sure we saw him staring.  Now it was my turn to turn red.

"She doesn't have a sunburn, she has a skin disorder."  Once again, trying to just turn my conversation back to Ashlynne, he interrupts again.

"Oh, but why is she so red? I mean, she's SO red."

What I really want to say is this:

"Yes, we have eyes too, we see that she is red.  And while she has a skin disorder, and has very red, dry skin, and limited movement, she also has ears.  And those work just fine.  And you are offending that sense in every way possible.  You are clearly, elderly, which means that you have probably seen many things in your lifetime, and if you have reacted this way to everyone you have come across that is different, I'm surprised your jaw isn't wired shut. You know when you're saying things like this to a child, you are chipping away at her confidence, and her self esteem.  People like YOU are the reason it is so hard for her to get up and do these things.  And then, when she does, and she feels great about it, you march right up and open your mouth and take some of the wind out of her sails.  Shame on you.  But I want to thank you for once again teaching me a lesson in self control, patience, and understanding, because everything in me right now wants to verbally assault you. But I won't, because you aren't the first @$$hole, and you won't be the last."

These girls did awesome!!

But what I really say is:

"She has ichthyosis.  That is why she is red, and her skin is dry.  But I think she's the cutest bumble bee I've ever seen."  And I take Ashlynne's hand and simply walk off.  But my daughter's spirit won't be broken.  She just made crazy faces to his back when he walked off, and laughed it off.  She just shook her head and said "Old people..."  She won't let people like that keep her down.  She is still going to do dance, she enrolled in Lyrical for this session.

One thing I will never understand is why some people feel that it's ok to make ignorant, rude comments to a child.  Think them to yourself, ask someone else, but she is a CHILD!  But something I have learned is this:  Common sense, and common courtesy... they aren't very common.  Maybe we should have an awareness month for that....

Our Jouney with Ichthyosis: 12 years later

I started out on this journey just over 12 years ago, a scared, overwhelmed 20 yr old girl. The fork in the road of my life took me down a path that I never envisioned for myself.  I was never supposed to be a single mom to a special needs child with a rare skin disorder.

Ichthyosis... Never heard of it? Neither had I up to January 13, 2003.  But the next day my entire world was turned upside down when my daughter was born with this very rare, very severe skin disorder.

I remember the first few years being filled with countless appointments, blood work, physical therapy, and terms being thrown at me that I had never heard before.  It was a complete flurry of chaos.  And sadly, I look back, and I remember pain.  A lot of pain and a lot of heartache.  This wasn't part of my plan.  This wasn't how I had dreamed of my life to be.  I'm supposed to look back at my life and remember that white picket fence, and rainbows, and Ashlynne chasing butterflies.  But that wasn't how it turned out at all.  I don't remember a lot of the milestones that I should remember with my daughter, because life was so overwhelming for us.

Ichthyosis used to completely run my life.  Get togethers with friends, family vacations, even trips to the store, EVERYTHING was based around whether or not it would be bath or lotion time, or whether or not the weather would allow for Ashlynne to go.  I even used to stay away from certain social gatherings if there were a lot of people I didn't know, just to save us all from the stares.  And trips to Walmart? Forget it! It was miserable with all of the comments and finger pointing.  If you ever want to truly test humanity, step foot into Walmart with a child who is visually different.  It's a real treat, let me tell you.  Whether or not my day was good or bad was based on if Ashlynne was having a good or bad skin day.  It was exhausting, isolating, infuriating, lonely, and just plain unfair... To both of us.

The tipping point for me was on one of those fateful trips to Walmart.  I was standing in the checkout line, Ashlynne sitting in the cart, when out of the corner of my eye I see two women pointing at her.  I had had it for the day.  I spun around on my heels, with a glare that could have cut those women in half, and I see them smiling from ear to ear.  SMILING... Then I looked at Ashlynne, and she was smiling back at them.  One of the women looks at me and said "Your daughter has the most beautiful blue eyes and blonde curly hair!"  "Thanks" was all I could muster.  I seriously almost launched on that lady that just so happened to see the true beauty in my daughter.  If she was able to look past Ashlynne's skin, then maybe there are others like her.

Why should I keep all of this joy to myself?

So I decided to drop my guard a bit.  I started getting more involved with the amazing people at FIRST and met other people associated with Ichthyosis, and my confidence slowly grew.  I knew my daughter was beautiful, if others couldn't see it, that was their problem.  I stopped letting her hide behind me, and started showing her off to the world.  Why should I get to be the only one to enjoy this amazing little person?

Now I find myself at peace with all of it.  The anger and the inner struggle of trying too hard to make her life "normal" has dissipated.   Twelve years ago I wanted so badly for everything to be perfect.  Now, I realize that isn't a reasonable dream for a parent with a typical child.  They're going to have dirt and grass stains to accessorize their outfits, and dirty Doritos fingers.  We just happen to have aquaphor stains on our clothes and a few extra skin flakes hanging out. 

Rare Disease Day 2015

Merriam-Webster defines rare as a :  marked by unusual quality, merit, or appeal :  distinctive

b :  superlative or extreme of its kind. 

Dictionary.com defines it as "usually excellent; admirable; fine."

Discovery.com states that it takes millions of years for crystals to form in nature and only a fraction of those will ever be found, mined, and cut into gemstones. 

The rarest gems tend to be valued the highest.  We can search nature, and may never find one of these rare, precious stones.  In fact, wealth used to be measured by the amount of these precious gems that one possessed.  

The first time I held my precious baby in my arms.
She was 5 days old. 1/20/03 

When I began the journey of motherhood, you could compare it to a fisherman.  Here I was, dragging my net, and when I finally opened an oyster, it held inside that rare, precious pearl. 

My rare gem came in the form of my Ashlynne.  Twelve years ago when she was born with a rare disease called Ichthyosis en Confetti, I didn't realize the wealth she would bring to my life.  I thought of all of the things that she might not be able to do, rather than all of the things that she could do, and all of the greatness and awe she would bring into my life.

Fewer than 20 people are documented to have this particular type of Ichthyosis.  Ichthyosis is rare enough, and Ichthyosis en Confetti has been considered one to be extremely rare.  Many people tend to be leery of things that are rare.  "Fear of the unknown" is a common phrase most people are familiar with.  But through life experiences that I have learned from being Ashlynne's mommy, I have come to embrace rare. 

Today is Rare Disease Day.  And today, I am celebrating rare.  Rare is beautiful.  Rare is anything but typical.  Ashlynne is rare, but that's not what makes her extraordinary.  She is special because she is Ashlynne!

Alone we are rare.  Together we are strong!

Celebrate rare with us! Celebrate You!!!

Tiptoeing around words...

"Oh she's gorgeous!" and "Oh... how precious".  As a mom, you know the difference in these two phrases when they are used in reference to your baby.  Especially when you have a child with a visual difference, or special needs.  And of course, I was and sometimes still am, super sensitive to the differences in wording.  Looking back, I almost feel sorry for the people that were caught off guard, and didn't know what to say.  They were trying to be polite.  But it was there.  The akwardness they felt, and them choosing their words carefully when seeing my baby for the first time.  But "It's ok", I wanted to say.  "It's ok that you don't know what to say, I go home every day and tell her how beautiful she is."  Yes, she is precious, and she's beautiful too!

Ashlynne with our friend Bailey, who is an
absolute beauty, inside and out

Of course my friends and family knew before they met her that her skin was going to be a little redder than most, and that she would have dry flakes of skin, and gobs of lotion on.  People were nice enough to let each other know, so they weren't caught off guard, and they were prepared.  But what was I supposed to do, put a sign on the front of her stroller to advertise to strangers before they approached?  To warn them of my child's visual difference?

It used to hurt so bad, cut deeper than they knew, to hear people tip toe around their words when asking about Ashlynne's skin disorder.  "JUST SAY IT!!", I wanted to scream.  Just ask why she's so red, ask why she has such dry skin, ask why she has little skin flakes on her clothes, ask about the lotion!!  It's not like I haven't noticed myself.  Sometimes I just wanted to yell at people and ask them to stop treating it like the giant elephant in the room.

I've heard it said before that the quick look aways hurt more than the stares, and the comments.  I had never thought about this, but once I did, I realized how true it was.  How hurtful it can be that people would rather look away and pretend she doesn't exist rather than just ask tactfully what she is afflicted with. I want to show her off to the world, because I am proud of her.

She was, and still is, my miracle baby.  When I look at Ashlynne, or any other child with Ichthyosis, or any other visual difference for that matter, there is nothing to me that is more beautiful.  Some of them are lucky to be alive.  They are fighters.  She came into this world fighting.  First, fighting for her life, and now fighting for a "normal" life.  And they have now taught their mommies and daddies, and siblings to be fighters as well.  And so much of their beauty lies in how much they are teaching those of us around them.  They are teaching us patience, acceptance, and understanding.  They are teaching us to look deep inside ourselves and reevaluate what we thought was important.  They are teaching to really, REALLY look at what it means to be beautiful.  They are true INSPIRATIONS!!

My goofy, funny, beautiful, precious daughter

My daughter has a shock of golden blonde curls, and strikingly blue eyes, and lips that are oh so kissable.  But these are just her physical features that make her beautiful.  She has compassion, a sharp sense of humor, she is a good sister, and a great friend (just ask her best friend).  She loves babies, and animals, and sports.  She likes to pull pranks, and tag me in silly Facebook posts, and fight with me about clothes.  She likes to do chores to earn money, and she has started to love cooking.  She is patient, and loving, and FUNNY!  And all of this, is beautiful to me, and to many others that have been blessed to know her, or any other special needs child.  Special needs kids tend to look at the world in a different light.  The slower pace of life helps the people closest to them "stop and smell the roses".  To me that is beautiful AND precious.  So I no longer choose to take offense to the careful wordage people have used.  You're right, she is precious, and so many other things.

The impact of one word

Well, coming up on Ashlynne's 12th birthday I am doing that thing I do every year, reflecting.  Reflecting on how much I, as a mom and as a person, have changed since she made me a mommy.

Have you ever stopped and thought about the impact that learning one new word can have on your life? Most words come and go in our lives rather casually.  Most new words are learned without really giving it a second thought.  Or other words that can have a huge impact on our life, such as cancer, or heart disease, diabetes, are words that are so commonly spoken, that we can't pin point when it was that they were actually learned or first spoken to us.  But on January 14, 2003, I learned a new word that would change the course of my life forever: Ichthyosis.

Ashlynne was a matter of minutes old before her doctor figured out what was wrong with her at birth.  And after phone calls were made confirming it, I heard this word for the first time in my life.  I didn't know right then the impact it would have on the rest of my life.  Oh how I began to hate that word!  I couldn't force myself to say it some days.  The anger that would rise up in me when I had to explain her diagnosis to all of the people in my life who had never heard this word was immeasurable.  I was so ANGRY!  I HATED Ichthyosis and everything associated with it.  I hated the doctors appointments, and the physical therapy appointments, and the lotioning, and the long baths, and the fact that my baby was in pain every minute of every day!  I hated that I had to explain that no, she isn't burned, no, she doesn't have milk on her face, that's lotion, no, she isn't dirty, in fact she's had 2 baths today.  I hated that she didn't walk until she was 2 1/2.  I hated that I didn't feel like I could go out in public with her without people making comments.  I hated all the well intentioned advice I got about trying shea butter, or some other concoction of lotions someone's aunt's neighbor had once tried.  For a time, I even hated God.  Why would he let my innocent, perfect baby go through all of this hell?!  She didn't deserve this!


Then I got myself together.
And I got myself educated.
And I connected with other families, and with FIRST.


Life gave me a huge slap in the face the first time I heard that word that at first was my biggest nemesis.  From the second that word was spoken, my whole world was turned upside down.  But as I became more involved with other families, my world began to right itself.  I started to realize that I could draw off of the strength of some of these amazing mothers that had raised very successful kids that didn't feel sorry for themselves.  Some of them had it way worse than Ashlynne and I, so what right did I have sitting around crying over what could have been? I needed to change my perspective.  I needed to start being thankful that things weren't as bad as they could have been.  "Could have been" could have been much worse than it was!  When I stopped and really looked, I had a huge blessing on my hands.  All of those appointments, they gave me time with her where my attention wasn't divided.  All of those baths, those were play time, and one on one time.  And there was a protectiveness, and a bond there with my little girl that no one could touch.  She looked to me to apply that lotion, that made her feel better.  I got to carry her around longer, when other kids were running around and didn't want to be carried by mommy anymore.  And the physical therapy, most of that she just looked at as play time!  This was MY girl!  And you know what?  She was awesome!  Even as a baby, I could recognize that she was a fighter.  Her will was strong, her sense of humor intact, and I had never seen a more beautiful, perfect child.  I started to smile when I saw the skin flakes on the couch, rather than be embarrassed that someone else would find it dirty.  I wore those Aquaphor and Vaseline smears on my clothes like a badge of honor.  Honor.  I was HONORED to be her mommy.

My anger dissolved, and rather than resent Him, I began to thank God every day that he trusted me with this little blessing.  I have always believed that God only gives you what you can handle.  And he doesn't always give you what you want, but more importantly, what you need.  And I am most certain that God realized that I needed Ashlynne as much as she needed me.  She has kept me grounded.  When times in my life were crazy, such as going through a divorce, or other major changes, her Ichthyosis forced me to focus.  I didn't have the choice to slack off, I had too much to do.  Being Ashlynne's mommy carried me through some of the hardest times of my life.  And I can only hope, the I can carry her through the hard times that are sure to strike her some day as well.  Not only did I draw off of the strength of the other amazing families I met through FIRST, but I also began to draw off of her strength.  If I gave up, or fell short, so might she.  And that is something I wouldn't be ok with.  For just as I imagined before she was born and the word "Ichthyosis" changed my world, I knew she was destined for great things.  This was one thing that Ichthyosis didn't change for me.  My girl was going to be an amazing force in this world.

Ichthyosis changed my world, but change can be good.

"Affected"... Aren't we all?

Reflecting back to the FIRST conference last week, one phrase keeps ringing through my head. In the Ichthyosis community, we often use the term "affected" to describe the person who actually has Ichthyosis.  I understand that this is the lesser of evils where other terms could be used, but it's something that really has me thinking.

Ashlynne's biggest protector, her best friend,
And her big little brother, Gavin 

I watched my 8 year old son at the conference this year very closely.  I noticed him laughing more, interacting more with others, and a general ease about him I don't normally see.  So in a rare moment that it was just him and I in the room, I asked him about it.  I asked if he had fun, and he gave me the standard "yes" that I normally get out of him, being that he is pretty easy to please.  When I dug deeper, he told me that it was really nice to not have to worry so much about Ashlynne.  That he didn't feel like he needed to protect her there.  There was a hotel full of people that looked similar to her, and he didn't have to worry about people staring at her.  I've always known that Gavin is immensely protective of Ashlynne, but I never realized that protectiveness affected him so much.

Which brings me to the point of the term "affected".  When I look at our life, and our day to day routine, whether it is Ashlynne, or the rest of our family, we are all "affected" by Ichthyosis.  No, Gavin, Logan, and Breckyn may not be the ones that have to apply gobs of aquaphor daily, but they also don't get to have the typical daily routine that other kids do.  When it's too hot for Ash to do something outside, such as go to the zoo, or play at the park, none of us go.  When we have to leave somewhere early to get the bath routine done, we all leave.  When we are out and about and people either, state, point, or whisper, it upsets them too.  The time that I spend helping with bath and lotions, and changing sheets and vacuuming her room and around her bed multiple times a week, is all time NOT spent with them.  Don't get me wrong, I am not complaining about any of this, I am just reflecting on the fact that in a sense, we are all "affected".  As I have said before, Ichthyosis isn't just a physical condition, it's also very much an emotional one as well.  So all of us in this little Ichthyosis family of ours are affected, even if we aren't the ones that have the affected gene.

By the way, when I asked Logan how he would feel about going to the next conference and meeting other people like Ashlynne, he said he would love that, because Ashlynne's awesome, and if they're like her, that means they are too.  Oh to see the world through the eyes of a child!!

The end of Ichthyosis Awareness Month: My hopes

Yesterday brought the end of Ichthyosis Aawareness Month.  At the end of this month, I always reflect: Did I do enough to help raise awareness?  With over 1800 views on one blog post alone, I can only hope that there is at least one person who had never heard of Ichthyosis that has learned something about it.  I hope all of the advocates out there for Icthyosis have not only helped raise awareness for this disorder, but for many other things as well.  I hope that maybe because of hearing some of Ashlynne's story, people will stop and think twice before they stare at someone with a physical difference.  Or stop and think before they treat someone with a disability different than they would any other person.  It is my hope that Ashlynne can hold her head up high and not let this bring her down.  I hope that someday, she really does see that beauty really does come from the inside... It comes from the heart, not the skin.

I hope that this young lady realizes how truly amazing, and
what an inspiration she really is. 

Ultimately, I hope that Ashlynne becomes an advocate for herself someday.  Right now, she is very timid, and doesn't stand up for herself.  With awareness being spread, hopefully some day, it will be easier for her to do so.  As people become educated, maybe some of the stares will subside.  Maybe someone will be able to say, "Oh, she must have Ichthyosis".  Much like we do people with other well known disorders and diseases.  But while I want her to stand up, and be a spokesperson for Icthyosis, I don't want her to be a billboard.  I don't want her Ichthyosis to define her, or limit her.  I want her to help spread awareness, while leading the most normal, happy life possible.  After all, isn't that what we should all hope for our kids, happiness?

Thank you to everyone who has shared my blog posts this month, and who participated in Ichthyosis Day at the K. You guys were a huge part of helping our cause.  Your support means so much!

2nd annual Ichthyosis Day at the K!!!

Wow! What can I say about the support we receive from our friends and family?! It's overwhelming!  Once again a whole crew of Ashlynne's army showed up for Ichthyosis Day at the K this year to cheer on the Kansas City Royals, and to raise awareness for Ichthyosis.  My Aunt Sally came in from Iowa again, as well as several repeat offenders from last year.  We also had many new friends join us, and Ashlynne felt like a little queen again!

This year we went a little bigger and added shirts to the deal. I want to give a huge shout out to Last Chance Graphics in Abilene, KS for donating their time and making the shirts happen, and thus making this fundraiser more profitable.

Some of the crew at Ichthyosis Day at the K

We tailgated to start the day off right.  Then, of course, the kids had to take each grandma to hit up the gift shop.  They're pretty good about double dipping :).  Ashlynne and my friend Amber walked around the stadium in the 9th inning, and someone tossed her a game ball!  So that made her entire night.

Like I mentioned, we went a little bigger and better this year, which is our goal every year.  We added the t-shirts, and my work also did a penny drive to raise $ and awareness for Ichthyosis.  I am so proud of the girls at my salon for raising over $200 in change in the month of May!!!  So far, we have raised about $1500 this month to send to FIRST.  With t-shirt money still trickling in we are hoping that number is even higher by the end of the month!

Ashlynne and part of her army taking in the game

Thank you so much to everyone who has shown support to Ashlynne and our family.  I want to give a huge shout out to Devin, a very special person in Ashlynne's life, who sold a lot of tickets for us and helped make this year so successful.  My husband Russ, who really helped get me on the ball for the fundraising, Thank you, this wouldn't have happened without you.  And once again, Kurt and Kimmy at Last Chance Graphics, your generosity is so appreciated, and we thank you so much!!!

Oh, and one more thing, for the 2nd year in a row, the Royals won on our day!!! Go Royals and go Team Ashlynne!!!