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!