Tuesday, December 30, 2014

A letter to my 16 year old self

There is a Brad Paisley song "Letter To Me" that I have heard countless times.  But I heard it again on the radio today, and it got me thinking about what I, as an adult, would say to my young self if given the chance.  So, here it is:

Dear Cora,

Chase your dreams.  Don't hesitate.  Don't waste time on other fruitless ventures.  You know, deep down, where your heart is.  You will have a lot of people tell you that you will fail.  That you won't be able to pay your bills, or support your family, and the career won't last.  Don't listen to them.  They're wrong.  You're going to be great at it.  And you're going to love it, and you're going to be really good at it!  On top of it, you're going to meet some of the most amazing people because of it.

Don't chase him.  He doesn't define you.  And don't spend so much time sitting at home waiting for him to call, or come by.  Go out with your friends, go to parties.  Enjoy your high school life while you can!  You are going to get your heart broken, over and over again.  You can't make him love you.  He will give you one of the greatest blessings of your life, but after that, let him go.  You are only making yourself look like a crazed psycho! You are better than that!  He's not a bad person, he's just not good for you.  Some day, your Prince Charming will come along, just be patient.  He's worth it! (And your future husband is 5 years younger than you, so you have to wait until he's old enough to date anyways!) Anddont get behind the wheel of his little black truck on March 21, 1999.  It doesn't end well.

Don't buy that purple Cavalier.  I know you want it.  I know you can afford it, but just listen to your dad.  He will still be mad about you buying that car years later!  It will save you a bigger headache in the long run.  Just bite the bullet and drive the red truck for a while, it won't kill you.  And it will make your dad happier.

You can't save everyone.  Stop trying to.  You are going to get hurt, and trampled on because of your savior complex.  Not everyone wants to be helped. So just stop!  Not everyone has good intentions, and you are sometimes blind to that.  You are only leaving yourself open to getting taken advantage of, and it's going to happen a lot.

Put your cell phone down.  You don't have unlimited minutes yet (you will some day).  And you're going to have a couple of bills that are going to make your mom very mad!

Go see your Granny more.  Some day, all too soon, she will be gone.  The void that will leave in your heart is bigger than you could ever imagine.  You will miss her like crazy, so enjoy her hugs while you can.  Pick her brain about parenting.  Collectively, she has more parenting experience than anyone you will ever know.

From left, Kacey, me, Krista, Lex, and Melinda
at our Senior Prom.  All of these girls are still a
part of my life.  I am blessed.
Don't take your friends for granted.  Some of them will still be a huge part of your life into adulthood.  They will carry you through some of the darkest times of your life.  You don't know how lucky you are to have them.  Friends are the family you chose.  And no one knows you like those friends who lived your memories with you.

Appreciate your mom.  She is your biggest advocate.  She's not stupid.  In fact, she's pretty smart, and has a lot of very good advice.  Some day, you are going to look back and shake your head at the fact that you just didn't listen to her.  And stop treating her like crap.  She doesn't deserve it.

Don't waste time being angry, and holding grudges.  You can hold a grudge like its no one's business. You come by it honestly.  But it only makes your heart hard.  And that will eat you up.  People make mistakes.  Accept it, and move on.  You don't have to keep those people in your life, but hate and anger is like a cancer, and is so toxic.  It's ok to be sad about things that have hurt you, but don't lash out.  It solves nothing.

You're going to be ok.  You're going to be better than ok.  You are stronger than you think.  You are going to go through things that you think are going to break you, but they don't.  They will make you a better, more compassionate person.  Someday, you will have a family, and kids, a career, that you are so proud of!  Life will be great, and all of those hard times will be worth it.  When things seem like the end of the world, just remember, they're not.  You will get through it, and there will be a tomorrow, that is a new chance to start over.  Every day that God blesses you with is a new chance! Embrace it, and live your life to the fullest.

But most of all, find a way to love yourself.  You're worth loving.  And some day, you are going to have two ottos girls of your own that are going to need to see a strong, confident woman in their mommy.


Sunday, December 28, 2014

2014 recap

The Cossel family, Christmas Eve 2014
(We got this picture in 2 tries!!)
This has been a very busy 2014 in the Cossel house! I've never been good at getting an annual letter out with our Christmas cards, actually, I never even make it as far as getting the cards out! Maybe next year.

It was a year full of welcoming new lives into the world, as 3 of my very good friends had babies this year, saying goodbye to others, laughter, and love.  Josie, Sadie, and Sydney all came into this world healthy and happy.  Two of these babies I still have not gotten my hands on, and I am so excited to do so! Thank heaven for Facebook so I can watch them grow and feel like I get to see them regularly.

In February, Russ and I got to take a trip to Las Vegas with my Aunt Carol.  We went to Cirque De Soleil "Ka", gambled, ate at an amazing restaurant called The Strip House, shopped, and did a ton of walking.  Russ and my Aunt Carol's "nephew", Billy hit it right off, became fast friends, and stayed out all night and part way into the next day exploring the strip.  I don't have that kind of energy, so I'm glad they had each other!  I adored Billy too, as he is pretty much the male version of me, what's not to love?!

May brought on Ichthyosis Awareness month, where we hosted another Ichthyosis Day at the K, raising money for FIRST with the help of some of the most amazing friends and family.  Then in June, we set out to Indianapolis for the bi-annual FIRST National Family Conference.  It is always so good to reconnect with our Ichthyosis family, and see the doctors we have worked with.  This year I made new friends, got to put faces with names that I have chatted with online, and of course, got to spend almost a whole week with Jordan, my "sister", who is absolutely one of my favorite people in the whole wide world (and the mommy of Sadie, born this fall).  My parents got to join us this year, and I was so glad they got to experience what we have at the past conference we attended, as they are a huge part of my support system.  I also got to spend an afternoon with one of my oldest, best friends, Krista, who moved to Indiana this year.  She came up and went to an indoor trampoline park with us, where she and I got into a pretty intense game of dodgeball with some preteen boys, and we were quickly reminded of our age and our lack of nimbleness!

The summer was the first that we got to have Logan all summer.  For the first time he got to play t-ball, which maybe I'm a little partial, but I see an all star in the making!  Gavin was in coach pitch as well, his last year, and next year will move on to full blown baseball.  Those ball diamonds are my happy place.  I have some of the best memories from my childhood on those very same ball diamonds.

In the fall, Ashlynne started middle school, Gavin 3rd grade, and Logan kindergarten.  Breckyn, being only 3, is still just attending daycare, but to feel as if she is a part of it all, tells us that she goes to "pretty school".  She is thriving, and is a full fledged "threenager".  She challenges her older sis and brothers, and her parents regularly, but we all take it in stride.  Ashlynne has started playing trumpet this year, and Gavin and Logan are both getting AMAZING grades and are making us so proud.

We welcomed a new family member into our home in the beginning of December, another puggle, named Zailey.  She is 18 months old, and the size we thought Hurley was going to be! Breckyn had taken to calling them "Big Hurley" and "Little Hurley".  Bill, the min pin, and Buddy Nixon, the cat, are not amused by this new addition, but Hurley is loving having a new play mate.  We took Buddy Nixon in to get her declawed and spayed in the spring, at which time we were informed that "she" is actually a "he" and they couldn't  spay Buddy, but they would be glad to neuter him for us.  This is the 2nd time this has happened to us.  We were told by the breeder that Hurley was a male and didn't double check that.  We don't have the best of luck in this department!

Work is staying busy for both Russ and I, which we are thankful for.  We continue to be very blessed professionally.  When I get tired, and wish things would slow down, I am quick to remind myself of the people I know who are without work, and that puts me in check rather quickly.

I have been blessed with another year with my grandma.  As her health has been very shaky for many years, this was a huge blessing.  We have tried to go up on as many Mondays as possible for short visits.  I think it's good for all of our hearts to get as many hugs in with her as possible.

We hope you have had a year as blessed as ours, and look forward to a fun, eventful 2015.

Tuesday, December 16, 2014

Welcome to Holland- a must read for EVERY parent

This weekend I had the pleasure of meeting another mom with a special needs child.  Her child doesn't have ichthyosis, but his is more a cognitive, emotional, and mental disorder.  I found myself amazed at the strength of this woman, listening to her story.  I was sitting there asking myself the question that I have had many people ask me, "How does she find the strength to do it all".  Then I remembered a short essay that one of Ashlynne's physical therapists gave me when she was just a baby called "Welcome to Holland" by Emily Perl Kingsley, and it reminded me of how we, moms of special needs children, do it.

I mentioned to her this essay, and she said she carries it with her every day, and told me that there is now a 2nd part that someone has added to it.  So, of course, I googled it.  I felt as if someone had reached inside of my head and plucked the thoughts right out of it to write this.  It was amazing to me how much someone who had never even met me could sum up my feelings, my life, in such a few, short paragraphs.

To sum it up, it parallels parenting of a special needs child with a planned dream vacation.  Your whole life (your pregnancy) you have planned this dream trip to Italy (said trip being raising your child).  Then, when your plane lands, and you think you're in Italy, all of a sudden they announce you have landed in Holland (Holland representing the parenting journey of a child with special needs), where you will stay.  And it is not at all what you planned.  But when you stop and look around, you realize the beauty there.
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place."

The 2nd part discusses, as time passes, how the author has come to accept Holland as home.  I would never change my home in Holland for anything in the world.  I have met some of the most amazing people in my life because of this journey.  Relationships that I could never replace.  Relationships that I hope are as beneficial to the others as they are to me.  I never envisioned my days to be full of Aquaphor, and hours of bathing and lotioning, and multiple doctors appointments, and physical therapy sessions.  But I also, never could have envisioned, how much I would love this little person that depends on me.

2 of my travel guides through my own, personal, Holland
"I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!"

To any of my friends that are struggling with raising kids, I want to say this:  I have 3 other children, and while rewarding as well, I can't say that I landed in Italy with any of them.  Parenting is hard,  Very hard.  It is the hardest thing I have ever done in my life.  It is full of poopy diapers, vomit, sleepless nights, meltdowns, and fights.  However, it isn't without great joy.  I think at any given time, any parent may feel like they've landed themselves right, smack dab, in the middle of Holland.  So I recommend these essays to any parent.  And just remember, you're never alone in this journey.  Whether it's a child with physical disabilities, emotional/mental disabilities, or a typical kid, you're going to struggle.  But stop and embrace your own personal Holland.  God gave it to you for a reason.

Thursday, December 11, 2014

Why I won't turn off the Christmas Carols

I got an email from my corporate office this week stating that company wide, we don't have a policy on how to greet people for the holidays.  They don't specifically endorse "Merry Christmas" or "Happy Holidays", but encouraged us to be cheerful and greet our guests with a smile.  How sad that they have to remind us to smile.  It's easy to get in holiday burn out mode working in the retail/service industry this time of year.  I have listened to so many people talk about Christmas and Thanksgiving when they are sitting in my stylist chair.  And what saddens me is probably 90% of the time, the only thing they are talking about is their Christmas list, or what they have or have yet to buy.  It's very easy to get caught up in all of that, I find myself doing it as well. That, I think, is why so many of us are "ready for the holidays to be over" or get so stressed out and burned out.  So when I get home, I crank my Pandora. (Pentatonix holiday station is the best!!) I know that Christmas music is another thing for people to get burned out on, but I'm not talking about cheesy Frosty the Snowman-ish music.

When you listen to most traditional Christmas music, rarely is it talking about the gifts, or the hustle and bustle of this time of year.  But it is talking about the cheer, the warm feelings, and more importantly, in line with the beliefs of our family, CHRIST.  They talk about the birth of Christ, and the religious aspect, and the family togetherness, which is what it is really all about. But being a Christian, I would never be offended if someone wished me a happy Hanukkah, or any other religious greeting.  In fact, I get more annoyed with the whole "seasons greetings".  We have created a society of a bunch of wimps who get their feelings hurt too easily.  When I wish someone a merry Christmas, it is not me forcing my beliefs on them, it is me trying to brighten their day.

So, whether it's Christmas, Hanukkah, or anything else that you might celebrate this time of year, shout it from the rooftops.  Say "Merry Christmas", or "Happy Hanukkah".  Because it shows you have cheer in your heart, and that's something this world needs a little more of.  And from the bottom of my heart....


Friday, August 22, 2014

Dance like no one is watching

Ready to dance the night away
I just dropped her off at her first middle school dance.  Can this really be happening?  Wasn't it just yesterday that I held her for the first time?

On days like today, I find myself reflecting.  Not just because of the milestones my kids are hitting, but because I watched a dear friend lay her dad to rest today.  Something that, by the grace of God, I have not had to do yet myself, but my heart was still aching for her.  I watched the slideshow, heard stories from his family and friends, and shed tears with the rest of the congregation in the church.  But watching that slideshow (which was the duration of 3-4 songs) sum up his full life in a series of pictures made me realize how fast it really does go.  I'm sure for Nick it felt like it all happened in the blink of any eye.  He could probably tell you the specifics of when most of those pictures were taken, and it would probably bring a smile to his face.

Life is but a series of moments.  I have had a good life so far.  Not a perfect life, not a life without trials, but overall, a very blessed life.  What I was reminded of today, was to not take those little moments for granted.  So I took pictures.  Probably too many.  Ashlynne asked why I had to take so many.  "Because I want to remember this moment" I said.  Some day,  I will look back at these pictures,  and it will seem like "just yesterday that she was going to her first middle school dance".  For now,  I have the picture in my mind,  but some day,  hopefully my head and heart will be so full of good memories that I might need the pictures to remind me of some of these times.  Or I might just want to look at them to reminisce, and to smile.  But I will never regret snapping those few extra pictures, and capturing that beautiful smile, that one brief moment in time.

In about an hour, I will be picking her up from that first middle school dance, and hopefully I will have a car full of giggly 6th grade girls, that are tired, danced out, and full of middle school love stories.  Maybe I will snap a few pictures of that too :).  Life is good.

"Our lives, are better left to chance.  I could have missed the pain, but I'd have had to miss, the dance." - "The Dance" by Garth Brooks

Monday, June 30, 2014

"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!!

Tuesday, June 24, 2014

FIRST National Family Conference 2014: Connecting at the Crossroads

Two years ago when we attended our first F.I.R.S.T. family conference in Denver, Russ and I made the decision that we would never miss another one.  After attending this weekend in Indianapolis, that resolve has strengthened even more.

Gavin and Ashlynne at the
Indianapolis Zoo
This year we loaded into my parents' van with myself, Russ, Ashlynne, Gavin, and my mom and dad and set out on the 10 hour drive.  It was pretty smooth sailing as it was interstate the entire way.  Other than the usual boy smells of stinky feet and gas, I was surprised that there were minimal meltdowns.  We decided to arrive a day early, and stay a day after the conference was over so we could fit in some sight seeing and other fun.  We went to the Indianapolis Zoo, went shopping, and on Sunday, my friend Krista drove up and we went to Sky Zone, an indoor trampoline park that quickly reminded me of my age.

But the highlight of the trip for me was definitely the conference.  I can not put into words the relief I feel when I walk into a place where I know that we, as a family, are not alone.  In Denver, I saw my daughter, for the first time, truly relaxed outside of our own home when she was finally around people who looked like her.  This year, it hit me just as hard.  But I was more relaxed myself, and observed how much more at ease we ALL were.  I didn't have my guard up, ready to divert stares, or answer rude questions.  Instead, we were able to interact with other families who truly "get it". Some of these families I have met before in person, others I have had on Facebook for years and felt as if I knew them, and others were complete strangers prior to the weekend.  However, they all felt like family.  I am always so surprised, when talking to new moms of an affected child, how fresh it all really feels to me as well.  I will never forget that feeling of trying to wrap my head around all of the information that is given, and how overwhelming it really is. There are a lot of memories, and emotions that fade as time passes, but this is not one of them.
Ashlynne and Portia, her little "mini-me"

On Friday, Rick Guidotti was our keynote speaker. He founded an organization called Positive Exposure that is doing AMAZING things.  Rick is a high end fashion photographer that was moved so deeply by a young woman he saw with Albinism on a street in New York that he was moved to action. He decided to put a face with many genetic disorders such as albinism and more recently, Ichthyosis.  He wants people to "change how you see, see how you change".  He wants people to look past the physical differences, celebrate beauty on all fronts, and see what we all share, which is humanity. So he is doing just that by photographing young men and women and celebrating their differences and their beauty.  There is no way that I can relay the passion that he has for his work.  He was an amazing speaker, and moved me to tears at several points during his speech.

We were part of a panel on Friday for fundraising.  Russ and I got to test our public speaking skills, and as usual, I talked more than I intended! There was also an anti bully campaign there as well, and these people gave me some good tools for my tool box on how to address the stares and the whispers.  Level the playing field.  Share our story.  Remove their power.  I need to be more outspoken with the stares, rather than just shielding her from the stares and whispers.  I have to give her the skills to deal with it when I'm not there to do it for her. And I don't want her to hide behind me. I want Ashlynne to stand tall, and be proud of the beautiful woman she is.

Overall, the weekend was perfect!  I am so grateful for all of the hard work that Jean Pickford and her staff put into this weekend, and their work in general.  We left feeling reconnected, rejuvenated, inspired, and motivated.  Thank you to everyone who shared our weekend with us!!! I can't wait to see everyone again in 2 years!! Goodbye was of course the hardest part of the weekend, but as I told the kids, it isn't goodbye, it's "see ya later".

Tuesday, June 17, 2014

Summer... Cossel style

Summer is in full swing and  we are hittin it hard!  The entire month of June consists of 4 nights a week at the ball diamonds, 2 nights a week of officiating basketball for Russ, and one night where we can all actually see each other!  And we also have to fit in work, and life in between innings!
Logan getting ready to bat for the first time!

We are lucky enough to have Logan for the whole summer starting this year.  It has been awesome!  We got him in t-ball and have packed in as much swimming as possible, and he is starting to make some friends here in Abilene.  His games are on Wednesdays and Fridays, and Gavin's coach pitch games are on Tuesdays and Thursdays.  We might as well camp out at the ball diamonds, but I wouldn't trade it for the world!

The first weekend of June, I traveled back to Meriden, KS, my parents' home town to a family reunion for my dad's side.  My dad is one of 14 kids in his family, and we are a crazy beautiful bunch.  Twelve of the siblings made it back, and many of my cousins and their kids.  My Uncle Scott and Aunt Steph were generous enough to host, and organize the first family reunion us Welborn's have had since before my granny passed away in '03.  It was hosted at her old house, where Uncle Scott and his family live.  I hadn't been back to the house since she passed, and I'll be honest, I was very nervous about going.  I didn't know what kind of emotion it would bring out to walk through Granny's house again.  I miss her like crazy, and wish my kids had gotten a chance to know her.  But, it didn't make me as sad as I thought it would.  Instead, when I saw all of the work that my aunt and uncle have poured into this home, and remodeling it, and cleaning it up, it made me realize how happy Granny would be that they kept the home in the family, and are taking great care of it, and making it a beautiful home.  But the night was awesome!  It seems like anymore, the only time we all get together anymore is at funerals.  The unexpected loss of my cousin, Rochelle, in October really got us all on the ball of realizing that we can take time for granted.  These relationships with cousins and family are 1 of a kind.  My cousin Crystal was my first best friend, and there is still a connection there no one can touch.  But, it was great to see everyone, and we are going to make it an annual thing now! We are working on hosting it in Abilene next year, around he time of my Uncle Danny's 70th birthday, so that we can get him to jump out of a perfectly good airplane with my dad.  We will see if we can get Uncle Dan to skydive, I taunted him with the fact that if his little brother can do it, he should be able to :).
My dad with 11 of his siblings.  My Aunt Connie, Aunt Pam,
Uncle Danny, Aunt Norma, Uncle John, Aunt Edie, Uncle Scott,
Aunt Nancy, My Dad, Uncle Dean, Aunt Fleeda, and Aunt Sally 
A whole lot of us from our crazy clan.  There were too many
cameras flashing, no one quite knew where to look!

Last weekend, we had a wedding to go to, and Russ's Florida Family was in town.  So for Fathers Day, we all got together, where burgers were grilled, and the kids wore themselves out on a bounce house.  Both sides of his family were there.  I absolutely love his cousins in both sides of the family, so it was a great day for all!

This week we are traveling to Indianapolis to the bi-annual family conference for FIRST.  I'm so excited to see our friends and extended "family" that we have made in this little community of ours.  Russ and I will be speaking about fundraising on Friday, and other than that, we will be attending classes, support groups, etc.  I don't think it could come at a better time for Ash.  She is getting ready to start middle school, and her confidence could use some boosting right now.  Two years ago, when we attended for the first time, I saw my daughter completely relaxed, and come out of her shell.  She was, quite possibly for the first time, completely comfortable in her skin.  My parents are going to be able to go with us this time, and I am so excited for them to get to  wet some of the amazing families that I have had the opportunity of meeting.  I am, however, having flashbacks thinking of the cross country road trips with the family when I was a kid!  Let's just hope technology, such as portable DVD players and tablets and GPS make this trip a bit smoother than some I remember from my childhood!

I'm sure I will have plenty to update everyone on throughout this week.  Stay tuned for shenanigans from the road to Indy!!!

Sunday, June 1, 2014

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!

Tuesday, May 27, 2014

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!!!

Wednesday, May 7, 2014

Ashlynne's Army

I feel like the most common question I get asked by people is how do I keep up with everything... How do I do it?  How do I keep up with the activities of all 4 kids, work 40+ hours a week, maintain friendships and relationships, and care for Ashlynne's Ichthyosis on top of all of it?  The answer is... With a lot of help.  I couldn't do what I do without an amazing army of support behind me.  I have a very understanding husband, who gets that he can't always be the center of attention, and that we both have to make a lot of sacrifices to make our life work.  He stepped right up to the plate from the second he met us, and took on me (which is a chore in itself!) and took on Ashlynne's care without even batting an eye.  Financially, he has helped care for her in many ways and has helped provide things that I couldn't have on my own, and emotionally, I don't even have any words for what he has provided for the two of us.  I have very caring, understanding friends that get it that we can't always drop everything and go, like the average family.  Every evening has to be planned well enough to fit in Ashlynne's bath and skin care routine.  And we have definitely been blessed, because a lot of our friends will come to us if they know we are planning a late night!  Some of my girlfriends will even step up and start lathering lotion on Ash's back to make it go faster so we can both get back to the group.  Because everyone knows Ashlynne definitely does NOT want to miss out on anything!  We have a good friend, Bobbie, who has helped us figure many things out as far as insurance, and medical care.  We have been blessed with AMAZING teachers who have taken a very keen interest in Ash, and have done their best to help her physically and emotionally.

But most of all, I am blessed with an incredible family.  My parents picked up the slack from the very beginning.  When Ash was born, it took me a while to get my head above water and even wrap my mind around the disorder that affected her.  During this time, it was my mom that was researching every product and finding every support group she could. She has always been there to help give me a break if I just need a weekend away, and for a shoulder to cry on on those days when it starts to feel like too much.  And my dad has always been that guy that let me get the tears and anger out on those days where I ask myself "why her?", but has always been strong enough to tell me that it's time to put my big girl pants back on and get through the tough times. Neither Ashlynne, or I would be where we are at today if it wasn't for all of the unwavering love and support they have shown us on this journey.
Our rock
My, and Ashlynne's biggest cheerleader

It is because of all of these people, and many others that I have not mentioned, that we have been able to give Ashlynne as "normal" of a life as possible.  Thank you to every single one of you for your support, for being a part of our lives, and for sharing our story!

Sunday, May 4, 2014

Partners in Crime

May is Ichthyosis Awareness Month, so I am doing my best to spread the word as much as possible about the disorder that affects Ashlynne.  As I was wracking my brain for new, different ways to promote it, I was thinking about how I have written about how it affects her, and how as a mom it affects me, and it got me thinking about her best friend, Anika.
Anika and Ashlynne with their new BFF necklaces

These girls have a friendship going back to kindergarten.  And I always knew how much they enjoyed each other, but this year I have come to realize just how much of a bond they have.  At parent teacher conferences this year, Ashlynne's teacher told me that she has never seen a friendship like theirs.  Anika waits by the classroom door every day for Ash at lunch, recess, and at the end of the day.  She helps her when she can't reach something, and she waits for her when she is moving slower than the rest of the kids.

When Anika stayed the night this Friday, I asked her what her favorite thing about being Ashlynne's friend is.  She replied with "only one? There's so many things", while tapping her finger to her chin.  The she told me that it was probably the fact that they always look out for each other.  I expected her to follow up with things like, when people are being mean to Ashlynne, she sticks up for her, or when people are staring, she gets them to look away.  But instead she said that when someone is mean to HER, that Ashlynne always defends her. And that when SHE is having a bad day, Ash can cheer her up.  Her responses really surprised me.  I always prayed that Ashlynne would have good friends, and that people wouldn't just be her friend out of pity, because they felt sorry for her.  Right then, I realized God answered that prayer in the form of Anika.  I truly believe that when Anika looks at Ashlynne, she doesn't even see her Ichthyosis, she just sees her friend.

I've always thought that Ashlynne having physical differences was really going to have certain perks when it came to dating.  Such as, the person that she ends up with will really truly love her for her. It won't be a superficial love.  It might really save her from getting her heart broken when she's a teenager or young adult.  Lately, I've come to realize this to be true when it comes to her friendships as well.  Her core group of friends are going to see past all of the differences on the outside, and see her for the beautiful young lady she is on the inside.  And Anika has been doing that for 6 years now. I firmly believe that she has made a world of difference in Ashlynne's life.  See, as I've said before, Ashlynne's Ichthyosis doesn't only affect her, it affects everyone who loves her.  Anika included.  Some day, Anika will have to answer those questions, such as "What's wrong with your friend", or "why is she so red?".  But she doesn't let it stop her from hanging out with Ashlynne. When Anika stays the night, they have to take time out for Ash's bath, they can't play outside if it's too hot, but... She doesn't care.  She just wants to hang out with her best friend.  She doesn't let it affect her in a negative way.  And I think that's something that a lot of adults could learn from her.

And by the way, when I asked Ash what her favorite thing about Anika is, she said "we have so much fun together, and she just gets me". Pretty powerful statement if you ask me....

Thursday, May 1, 2014

Chivalry is not dead

As a mom, I have had a lot of little moments that have made my heart overflow with joy, but recently, I had a very distinct moment of my heart overflowing with pride.  I have to take some time to brag on my Gavin.

Last week, Ashlynne had her spring music program.  It was about the United States, and they sang various patriotic songs.  At the end, they sang the Armed Forces Medley, and asked all service members and veterans to stand and be honored when the song from their military branch was played. When the first song began, and elderly man, probably in his 80s rose, along with many others in the audience.  Out of the corner of my eye, I see Gavin start to stand up.  For any of you who are very familiar with my family, you may know that Gavin tends to be the light hearted, goofy one.  So in a brief moment of horror, thinking that he was standing to be honored, I started to hiss at him to sit down... But then I noticed his outstretched hand, and it hit me what he was doing.  He reached out and shook that old man's hand, and told him "thank you".

I was literally speechless.  I never would have dreamed that my 8 year old understood the huge sacrifice that the men and women of our Armed Forces make.  But some how, he gets it.  I was choking back tears.

The next morning, as I was dropping him off at school, I waited by the curb until he got into the building, like I do every day, and I saw him start to come back outside.  He just stood there, with the door open, holding the door for 2 little girls walking in.  At that moment it hit me,  he's not a little boy anymore, he's an amazing young man.  Some day, he is going to make an amazing husband.  But in the mean time, he is an amazing brother, a great friend, and a perfect gentleman.  Chilvary is not dead, ladies.  And my Gavin Lane is living proof of that.
I don't know what I did to deserve to be this little guy's mommy, but I'm one lucky lady!

Friday, April 4, 2014

A few tips from your friendly neighborhood Hair Stylist

Coming down from the busiest month of the year, I just thought I would pass along some advice.  Here are a few random tips that your hairdresser may be too nice to share with you. Lucky for all of us... I'm not that nice :). Enjoy!!

1.  When you ask us to "hook you up", what you're really asking us to do is basically hand you money out of our own pocket.  Most of us are commission based, or self employed, which means... time = money.  Believe it or not, we are not making a killing off of you.  We paid $10,000-$20,000 for an education that we may or may not still be paying on.  We have overhead costs, continuing education costs, and someone had to pay for that color I am putting on your hair, and if it's not you, it's me!  We have to buy our shears, and pay to maintain them, we have to buy our own brushes, appliances, and product.  We have to pay to replace the clothes that we ruin with color almost every day, and to replace the bras, that after a few wears have hair stuck in them that you can never get out.  In other words, it's not free for us to come to work, so we certainly don't want to work for free.  We offer discounts and promotions when we can, but when we do give you a discount, graciously accept it, don't EXPECT it.

2.  So you're ready for a major change, but you don't want to lose any length, you don't want any layers, you don't want to do color or a perm, and you don't want your eyebrows waxed??? I'm sorry, but there's nothing I can do for you then!  Go buy a new outfit.

3.  I CAN NOT give you 3 layers.  Well, I can, but I can also promise you won't like it.  You pick where you want your shortest layer, you pick where you want your length, and we blend from there.  Trust me, you don't want me to chop 3 layers into your hair.

4.  3 terms your hairdresser can't stand: die, pluck, and roots.  People die... You COLOR hair.  You PLUCK chickens, you TWEEZE eyebrows.  You have "regrowth" or, you just need to get your hair done, but ROOTS are for trees.  Know that your stylist is silently cringing if you use these words.

5.  I would rather fix your hair and have you happy, than for you to leave hating your hair because you're afraid to hurt my feelings.  It's not going to hurt my feelings if we tried something and you don't like it.  Anything is fixable.  We will figure it out!

6.  Hair doesn't fix itself.  One of the biggest complaints I hear from people in my chair is that they can never get their hair to look like It does when I do it.  Your hair will never look like it does when your hairdresser fixes it if you don't buy the products necessary to style it.  We don't recommend these products just to try to sell you something.  Once again, believe it or not, we're not making a killing off of the product either.  We are tryng to give you the tools to put in your tool box to make it easier for you!  Just like the house doesn't clean itself, your hair doesn't fix itself.  You have to do what it takes!

7.  If Pantene worked as well as the commercials say, all salons would carry it.  Don't ask me what you can buy from Walmart that will work.  I, personally, will not recommend anything from a discount or grocery store.  In fact, I don't even know what they carry!  And by the way, the only way to fix split ends is to trim them, all Pantene and other like products are doing is coating your hair in wax, causing more build up, which leads to less shine, and less volume.

8.  Just as I have the ability to brighten your day, you have the ability to brighten mine.  I have some of the best clients.  There have been plenty of days that they have completely turned my day around.  On the flip side of that, there have been a lot of days that have been ruined due to someone taking their bad day out on me.  Bottom line... We're people too!  But always remember, don't be mean to the girl with the scissors.  Unless you have eyes in the back of your head, you can't see what I'm doing back there ;).

9.  Don't call me on a Saturday, 2 hours before I get off, and expect me to be able to squeeze you in. Sometimes, I can.  But a lot of times, I just can't.  It's not always possible for me to stay late to get someone in just because they didn't plan ahead.  If it's that important that you get your hair done, plan ahead... We have to.

10.  The biggest compliment you can give me, is a referral.  If you love your hairdresser, assure that she stays in business, and spread her name around!

Monday, March 31, 2014

Spring 2014... Bring it on!!!

I don't mind winter. In fact, I love fall, it is my favorite time of year.  But I can honestly say, I have never been so ready for spring before in my life!  I'm ready for the renewal, and the new life spring seems to represent.  We had a tough fall, with the unexpected loss of my cousin, Rochelle.  And winter just seemed to drag out, with the multiple LARGE snowfalls, my mom breaking her foot,   And the utter lack of energy I had. February and March are a very high stress time for me at work, and of course that was proceeded by the busy hustle and bustle of the holiday season.  Not that there weren't good times in there, because there certainly were.  One of them being our "big kid" trip to Vegas in February.
Russ and I at New York New York after the dreaded roller coaster ride!

So bring on the warmer weather, bring on April, and bring on baseball season (go Braves!!!)

This spring we have our 2nd annual Ichthyosis Day at the K planned, with a very good response already!! Yay!! Thank you "Team Ashlynne"!  We are very much looking forward to that and are hoping to make it bigger and better than last year.  We also have a trip to the Wizard of Oz museum planned.  We have a certain little toddler that currently has her Papa watching that movie at least a couple of times per weekend.

Breckyn's 3rd birthday happens to fall on Easter this year, so that will be a very busy weekend for us. Aunt Carol is flying in for her birthday weekend, and our friend Shane is coming down from KC, so she will be very excited about that!

Logan will be graduating from preschool this year.  We will officially have another one in school!  And Ashlynne will be making the big transition into middle school.  Time really does fly. And Gavin is gearing up for baseball season, and has promised that he is going to help Logan learn how to play, as this will be Logan's first summer that we have him in t-ball.

Russ is working for the Salina Bombers again this year.  This is our local arena football team. Last year they finished as CPIFL Runners Up.  Pretty good for the organizations first year.  But as a perk for Russ working for them, I get into the games!  They are incredibly fun, and incredibly brutal.  And I love every second of it!  I'm going to take Misty and Seth to their first game in a couple of weeks.

But this weekend, was all about Elmo.  We took Breckyn to Sesame Street Live in Wichita on Sunday.  Of course, when Russ's mom and I are involved there has to be a certain degree of shopping involved.  So we left plenty early and stopped at the mall first.  Russ was quite he trooper for that part.  Breckyn had a blast, and thanked her grandma at the end of the night for her "best day ever".

Miss B at Sesame Street Live 

Grandma Susie and Breckyn

Russ, Breckyn, and I 

I think he was excited too!

But her reaction was priceless!!!

Tuesday, January 14, 2014

2013 recap

Ok, I have really been slacking on my blogging lately!  So I just thought I would post a recap of our year, and share our highs and lows.

In January, Ashlynne turned 10, which I was VERY emotional about, however, soon the pre-teen attitude set in!  This dried up my tears rather quickly!

In February, Russ and I went to Florida with his parents for vacation.  When we left Abilene, there was not a drop of precipitation on the ground.  However, the next morning when we were preprint to leave, literally 2 feet of snow was dumped on the ground, stranding us in KC, and delaying our flight for a day, thus forcing me to consume entirely too much wine!  We made it the next day, went to the NASCAR race, where we witnessed a horrible wreck on the last lap resulting in an engine flying into the stands and multiple fans being injured literally rows in front us.  We left in a hurry among all of the ambulances and panicked spectators.  The highlight of the trip for me was getting to see Krista, a long time friend who moved to Orlando the previous April. This was the longest I had ever gone without seeing her.  We went to Epcot Center and spent a day catching up.  On the day we were to leave, Kansas got slammed with another snow storm, delaying our flight home by a day.  I was so ready to get home at this point it wasn't even funny!

April brought Breckyn's 2nd birthday and a visit from my Aunt Carol.  She was able to be here for Breckyn's birthday party, which was very much a bonus!

In May, we held a fundraiser for FIRST at a Royals game and had a week long visit from our good friend Jordan.  When we wrapped that week up, Russ and I traveled to North Carolina to see Alexis and Danny. I blogged all about this amazing trip, but it was still worth a mention again!  This was definitely one of the highlights of my year!

We had a great summer with the kids full of ball games, swimming, and little "mini vacations" to Omaha and to Kansas City. I treasure my time off with the kids dearly. While it can be very stressful, I wouldn't trade it for the world.  The summer ended with the official start of school on Gavin's 8th birthday!

After school started back up it has been a flurry of activities. The older kids are doing great in school, and both had great conferences.  Then we had Halloween, and of course Thanksgiving started the official holiday season.  That means extra hours and lots of business for me at work.  It is an exhausting time, but I love the holidays.  Logan turned 5 December 8th, and we also had him the week between Christmas and New Years.  It's so nice when we have him for longer than a weekend and can really enjoy our time with him.

2013 brought a lot of changes for me with work.  My job has become more demanding of my time with changes in the hierarchy of our company.  All I can hope is that some day it will pay off.  Sometimes I question whether or not it is worth missing out on as many of the things that I do, but I love my job and my clients, and the girls that work for me, so for now, I will keep plugging away!

I hope that 2014 is as good to us as 2013 was!  We have 2 trips planned for the year, 1 to Vegas in February, and 1 to Indianapolis for the FIRST conference in June.  Other than that, we will see what the year holds for us!  But each and every day, I am reminding myself to count our blessings, we are all healthy, and together, and at the end of the day, that's what matters!

Happy 2014 from the Cossels!