ALS: Are you aware?

As many of you know, May is Ichthyosis Awareness Month.  Every year I flood people's time lines with info about Ichthyosis, and pictures, and facts.  I do my best to help educate.  This has been a cause close to my heart for 12 years now, my soap box if you will.  But nearly five years ago, another disease struck close to home and it shares its awareness month with Ichthyosis. This disease is ALS, commonly known as Lou Gehrig's Disease.  I don't know much about the physiology of it, and what exactly it does to attack the body.  All I know is how it affected a man that I cared very much about, and how it devastated my best friend's family.

David was a great man.  Growing up, Alexis's house had a revolving door for all of us loud, obnoxious girls.  With her mom and sister coaching our softball team, we were constantly running in and out before and after games and practices.  We would take over their entire house for a sleepover, and were never turned away, regardless of what else was going on in their life.  David had 2 boys of his own, and all of a sudden, he had about 10 of us girls thrown at him.  Never once did I see him lose his patience with us.  I remember his sitting in his recliner, in his work clothes, laughing as we would run through the house with our shenanigans.  He never told us to quiet down, go home, or go outside.  He took it all in stride.  He even started helping coach our softball team.  He did however stop coaching first base when I put him on his butt with a foul ball....

About five years ago, some weakness started in his legs, and he thought it was his back acting up again.  After several trips to the chiropractor, and a couple of falls, he made a doctor's appointment.  I remember before his appointment, his daughter, Sara telling me that they thought they had it narrowed down to 2 things, and they were hoping for M.S.  At their appointment, they got the news they didn't want to hear.  It was ALS, Amyotrophic Lateral Sclerosis.  A death sentence.  And he was at his grandson's t-ball game that night.  That was in June.  He was at every ball game that summer.  He was at the fair, and by the time the demo derby rolled around, which is a big deal to his family, he was using a walker.  I had done some research on it so I wasn't completely clueless as to what was going to happen, and I was in shock that it seemed to be happening so fast... and still in shock that it was happening to them.

He passed away the following June, after ALS ravaged his body.  He was able to give Alexis away at her wedding, and he and his wife, Linda, had a dance, all done from his wheelchair.  These wedding photos would be the last family photos they would all have together.  He left many, many people behind who loved him, and who were devastated to see this happen to him, and all of those who loved him.  It was a terrible disease.  And for me, it was a terrible year, watching it destroy these people that I love and have considered family for so long.  I watched it take an emotional, physical, and mental toll on not only David, but the entire family.

This is the face of ALS... This is David

This past summer, something went viral that many of you may have heard of, or even participated in.  It seemed that everyone was talking about it, and strategically planning who they were going to nominate to do it next.  The "Ice Bucket Challenge" swept the nation, and the purpose was to raise awareness, and money for ALS.  It raised millions of dollars, and raised A LOT of attention for a disease that is rarely in the news.  A lot of people admitted to participating, but not knowing what it was necessarily for.  And because of this, it received some back lash. Well I just want you to know, that David, and the others robbed of their daily functions and lives, is who it was for.  We did it for all of those families out there who are currently watching it destroy one of their loved ones, hoping and praying that there is a cure before their "David" take his last breath.  And someday, with all of the people devoting their lives to research, there will be a cure.  There has to be, because too many people believe in this cause.  Some of the greatest people I know hold this cause very close to their heart.  And they have a reason to.  They personally watched its affects on a person they loved very much.  A person that can never be replaced, but will continue to impact their lives with the love he showed, and the legacy he left for them.  ALS, took his body, and his physical presence, but it can never erase the memory we all have of his smile.

Ride on David...

Did you really just say that?!

Engaging in conversation is an everyday aspect of my job.  In fact, it's a HUGE part of my job.  Because of that, and the multiple conversations that are had daily, I have many "did she really just say that" moments, from myself, as well as my clients.  Here are a list of some of my most recent favorites...

* "Man, do you know how dirty balls are?" - A school principal talking about sports practices and the risk of spreading the flu via basketballs.  I think she realized what she said at the same moment I did...

* "I can't do anything too crazy with my color today, I just started dating a guy who is ex-Amish."  I'll try not to scare him.  That was a first for me.  Luckily, it was one of my good friends, and after it came out of her mouth, we were both laughing so hard we were almost in tears!

* "Just a hair off", - Sometimes I don't know if people are intentionally making a joke while saying this, or if they are just using the figure of speech, but it makes me "hee hee" inside every time someone says it.

* When a bald mad walks by the salon, stops, and asks for a perm.  Clever.  And stylists NEVER hear that one (insert sarcasm here).  Working in a high traffic mall, I'm surprised if I don't hear it at least once a day.  However, we appreciate you trying to make us laugh.

* "Do you guys do haircuts here?" .... well what do you think she's doing to that girl in that chair over there?  They aren't making dinner!

* When ringing a customer out and you tell them how much their haircut is going to be and they say "Dollars??"... well, yes.  I don't take payments in Hershey Kisses.

* A single guy sitting in my chair "I've sworn off dating hairdressers, they're all crazy".  Yep, we are, and I'm holding very sharp scissors very close to your head... Need I say more?  I have all the control here.

* I did a tight fade on a guy the other day with a hard part shaved in... while leaving he says "I'll be honest, this turned out way better than I thought it would when I walked in here".... I didn't even really have a response.,.. Thanks, I guess...

*And the worst, and probably the most offensive.... When someone of a different ethnicity walks into the salon, looks me up and down, and asks me if I am capable of doing their hair.  A couple of weeks ago, I literally had a guy walk into the salon, while the salon was packed with customers, and ask "Do you guys do dreadlocks in here?"  As soon as I opened my mouth to answer him, he yells "Who am I kidding, ya'll white girls don't know how to do my kinda hair!"  So. Rude.  That is something I would NEVER do to someone, nor would it be even remotely acceptable if the tables were turned.  If I walk in somewhere that I don't feel comfortable getting a service done at, I leave.. without making a scene.  Believe it or not, not all of my clients have the same kind of hair texture as I do.  I have worked with every type of hair texture, and am capable of doing anyone's hair.  However, if you don't trust me to do it, don't make a scene, don't be rude, just don't come to my salon!  If you don't think I can do your hair, that's fine, call around to salons, and find someone who you feel comfortable with.  But don't belittle me just because my hair texture isn't the same as yours.  It doesn't make me incapable.

I could go on and on with some of the moments where I have to hold back laughter or sarcastic comments, but I'll leave it there.  To my other stylists, I'm sure you can relate to some of these scenarios.  And to my clients, keep the material coming!  Love you all!

Update: Mom's Road to Recovery

Since March 2 life has been crazy.  As many of you know, my mom was in a serious car accident involving a semi losing its load of steel beams in front of her.  She was very lucky that her life was spared, and that she didn't have life threatening injuries.  I was so relieved when I got the news that it was "just her leg and foot" that was injured.  No big deal, right?  I couldn't have been more wrong.

The past 9 weeks have basically been a living hell for her.  Several hospital stays later, she spent a combined total of 34 in Wesley Medical Center and Via Christi St. Francis in Wichita, KS.  Eight surgeries later, the bones are fixed in her right heel, foot, and ankle, and the heel on her left foot has healed.  However, lately it feels that if we didn't have bad luck, we wouldn't have any luck at all.  Bigger problems produced themselves in the form of fracture blisters on her right foot.  These blisters showed up immediately, delayed one surgery, and have worsened over time.  After her fourth surgery, they ended up having to remove some of the dead tissue, leaving a hole in the side of her foot down to the bone.  They put a wound vac on it to keep infection down, and sent her home in the care of home health.  With each subsequent surgery, the dead tissue has spread, and the hole has become significantly larger, covering the entire side of her left foot, and stretching to her ankle.  At this point, they called in a plastic surgeon to do a muscle and skin graft.

Muscle was removed from her abdominal area, and skin from her thigh to try to cover the hole left by the dead tissue.  The night of the graft, she was rushed back into emergency surgery because there was little to no blood flow to her foot.  They implanted a sensor to alert them to low blood flow in the foot, and after flushing the veins and arteries to make sure there were no blockages, they have not had the same problem since.  However, through all of this we discovered that there are 3 major blood vessels that feed blood to your foot, and mom only has one functioning that was damaged in the wreck.  So needless to say, the muscle graft and skin graft rejecting, resulting in another surgery to remove the work they had done.

After the failed graft, the surgeons in Wichita sent her home, saying they didn't feel there was anything else they could do to help her.  They told her that they want her to have the best possible chance at keeping her leg, so they set her up with a referral to KU Medical Center in Kansas City.  Her consultation is today at 1:30.

So this is where we are.  Eight surgeries and several hospital stays later, the bones are fixed, but other problems have made it unsure as to whether or not she will be able to keep her leg.  The possibility is there that she may not.  However, my mom is a fighter, and she is not emotionally ready to give up.  So she has our full support, and instead of Wichita, we will now be hitting the road to KC.

They didn't know this would be their last goodbye

But that's just the physical part.  For me, the anger has set in.  Her life is altered forever.  The things that this wreck, her immobility, and her time holed up in the hospital have taken from her are some things that can never been replaced.  She missed Easter with her grandkids (which is a very big deal to her).  She has missed all the activities she used to do when babysitting Breckyn.  She has missed weddings, and birthday parties.  But more importantly, she never got to say goodbye to my grandma.  She was coming home from caring for her when the wreck happened.   My sister got her up there once to see her, but when Grandma went downhill fast, Mom couldn't get to Topeka.  And no one can give that back to her.  Someone else's negligence robbed her of that.

We are, however, overwhelmed with the love and support we have received from family and friends.  People stopping by to check in, family members coming to stay to help out, cards, flowers, and prayers.  She has seen how many people care about her and it is very heart warming.  People keep asking if there is anything they can do to help.  My answer is this:  Most importantly right now, she needs the good thoughts and prayers.  We're hoping to get some good answers from KU, that they can help her.  Right now, she refuses to look at any other option.  So keep the prayers coming, for her, for the doctors, and for her spirits.  She is strong, the strongest person I know, but there is only so much a person can take.  Just pray that this time around it is good news she is taking in!!

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.