Thursday, May 16, 2013

Momma's little get away

Well, Tuesday was back to reality for me after almost 2 weeks of fun for us.  And I'm having kind of a hard time getting back into the swing of things!
  I picked up Jordan from the airport on Thursday May 2, and she stayed with us for a week.  During that week we held "Ichthyosis Day at the K", which was awesome and successful!!! *two thumbs up*, we shopped, ate, hung out, shared a lot of laughs, and made a lot of memories.  It was great having her here with us for a whole week. We got very spoiled. I keep trying to convince her to move to KS, we will see if my power of persuasion works :).
I don't think it's in our DNA to take a serious picture
  When it was time for Jordan to leave the following Thursday, we all hopped a plane and flew into Charlotte, NC together, where my friend Alexis would be picking us up to spend a few days with her.  After lunch together, where we got to meet Jordan's husband Chris, and a few tears, we said goodbye to Jordan until next June, when we will be seeing her at the 2014 FIRST Conference in Indianapolis.  Jordan and Chris drove home to Columbia, SC and we headed north to Winston-Salem.
  We started off with some shopping, which for any of you that know Lex, this was a concession for her. She doesn't have the shopaholic gene that I do. But she was very patient with me, especially in the Coach store ;).  My favorite part about vacationing with Lex is that I actually get a chance to relax. Sleeping in for me is anything past 7 am, and I got to do this everyday!! We got massages on Friday while Russ stayed at her house and puppy-sat, then we headed down to Darlington, SC to the Nationwide NASCAR race.   This is 2 races I have been to this year, so I would call this progress. I am learning to embrace Russ's inner NASCAR fan.  We were down in the pits for the race, and seeing the inner workings of all of it was, I must admit, actually pretty cool.  It made Russ's day to be down there, he loves that stuff!  Saturday we went and had lunch at the Childress Winery, and I proceeded to polish off a few peach bellinis, which has become a tradition for Lex and I.  We went back to the house and continued the festivities with a get together with several of Danny & Alexis's friends.  While the guys watched the race, all of us girls played a card game called Anomia (if you haven't heard of this game, go check it out... FUN!!).  It was nice to meet Lex's NC friends and be able to put faces with the names. Some of her friends I already felt like I knew!
  Sunday brought a day of some serious sleeping in, and probably my favorite part of the trip, ZIP LINING!!! This is something I have wanted to try for a long time now, the DIY one from childhood put the taste in my mouth, but that one ended with a neighbor kid's arm broken. We had about 2 hours of zip lining through the trees, and had a lot of laughs throughout the day. Our guides were funny, and pretty good sports considering some of the comments that were made from our little group!  (Danny and I have a knack at being inappropriate) The harnesses were less than comfortable, and way less than flattering (more awkward for the guys if you catch my drift) but it definitely made for some good laughs.
  We flew home Monday.  It's always bittersweet.  I miss my kids when I've been gone, but its very hard leaving Lex.  I have known her since 1st grade, and that is such a valuable bond.  There's times it is so lonely knowing that she is that far away.  It really makes me cherish the friendship I am able to maintain with her. I am so glad that all of the miles between us has not caused us to skip a single beat.
  We got home at about 1:30 Tuesday morning, and after just a few hours of sleep, Russ was right back at it and headed to work.  I went to my mom's to get the kids, and was greeted with some of the sweetest hugs and kisses a girl could ask for.  Ashlynne was glad to see me, but still wanted to stay with grandma, of course, but Gavin and Breckyn wouldn't let me out of their sight.  I like to think they missed me as much as I missed them.  Later that morning, I discovered that my closet rod had broken and dumped all of my clothes onto the floor, and one of our hamsters died while we were gone... It's back to reality I guess!!

Wednesday, May 8, 2013

Laughter is the best medicine

  On Monday we had a girls day.  Ashlynne, Jordan, my mom, and I all decided to go to Salina and do some shopping. Normally shopping trips for us start out fun, but by the end of the day I am so mad and frustrated by all of the rude stares and rude comments that we have gotten throughout the day that I am just ready to go home.  The questions about Ashlynne, I can understand, and in all honestly, I welcome them because it gives me a chance to spread awareness. But the ignorant comments that come from some people continue to blow me away, even after 10 years of dealing with it.
  However, Monday had a different feel for me. It wasn't just Ashlynne this time. Jordan was there as her ally. We had a pretty smooth day, no stares, no comments (that I heard) until we got to Target. We were checking out, and the guy looks at Ashlynne and says "Looks like someone got a sunburn!" I replied with my usual "no, she has a skin disorder called Ichthyosis", but this time I was holding back a laugh, because I saw the man's eyes drift to Jordan, and I'm sure he was thinking "do these people not believe in sunblock?". In my mind, I was thinking of all of the comments I could make back to him such as "Ya, she's sunburned, and this girl (pointing to Jordan) was the babysitter. They spent the whole day at the beach."  When we got back into the car, we all laughed so hard that tears were rolling down our faces as we were saying all of the things we "should have" said. The girls both have confetti ichthyosis, which means they have white spots all over their bodies. So one of the scenarios was "ya, we were at the end of the sunscreen tube and it just splattered out, so we just left it" and, "they were sunbathing on the deck. They use rotisseries to get it so even! Isn't that such a good idea?!"  Another story could have been that my mom was all of our mom, and that she said oldest to youngest with the sunblock, and I hogged it all, which is why I am so pale, and they were burnt to a crisp.  The list goes on an on with all of the things we were saying. In fact, a road trip has been discussed, to see just how many funny scenarios we can find ourselves in.  We could do a video montage, or even a book, we could call it "The good and the bad of Ichthyosis". 
  To some people, from the outside looking in, this may not seem that funny, or it might kind of even seem morbid.  I know that Ashlynne's skin disorder is no laughing matter.  In fact, i know just how serious it really is. But for the first time, I can honestly say that I was able to laugh about Ichthyosis.  For the first time, I didn't walk out of that store mad. We were able to turn an upsetting situation into a light hearted matter.  Ashlynne didn't feel alienated or singled out, or like she was being stared at. With Jordan there, she felt like she was part of this exclusive club.  She had someone there who knew exactly how she felt in that moment.  It made me realize that sometimes, I need to not always take life so seriously. It's always good to be able to find a reason to smile. And I know that when I look back on that conversation, and the laughs we shared together, it will always bring a smile to my face. 
  I guess what they say is true... Laughter really is the best medicine. 

Monday, May 6, 2013

Ichthyosis Day at the K

  My head is still spinning from all of the amazing support we had from our friends and family, and even complete strangers yesterday for Ichthyosis Day at the K.  I would say that our first fundraiser for FIRST was a success! We sold out an entire section of Kauffman Stadium to watch the Kansas City Royals take on the Chicago White Sox.  And after 10 full innings, the Royals won!!
  We started out the day with tailgating, in the drizzling pseudo-rain, and headed into the game, where they had a bunch of other kid friendly activities going on. And close to the end of the game, the sun actually tried to come out! At this point, we were tickled pink to see the sun, considering this Thursday we had snow. The first time in my life I remember snow in May.
  We had a total of 3 people affected with Ichthyosis at the game, Ashlynne, Jordan, and our new little friend, 14 month old Carter.  And we also had the family of another affected person present as well. We had friends and family that came from all over, including my aunt that came from Iowa whom I hadn't seen in years (I was super excited about this!).  I honestly think that Ashlynne felt like a princess this day, knowing that everyone was there to help support her and our cause. She even got to get her picture taken with one of the members of the "K Crew", which is basically the Royals' cheerleaders.
  She got to walk around the stadium, take in the fun activities, and I didn't see any of the self-consciousness or un-ease that I normally see in her. I think she really felt comfortable knowing that she had an entire army there behind her supporting her. It didn't seem that she even noticed any of the stares, or maybe for the first time in her life, she was comfortable enough that she didn't care!
Ashlynne having the time of her life!

  I had several people approach me and ask me questions about Ashlynne, about Ichthyosis, and about FIRST.  All in all, mission accomplished. We raised $2200 for FIRST, got a chance to spread awareness about Ichthyosis, and had an absolute blast doing it! I would like to thank everyone who participated in this amazing event. It has gotten me so motivated to encourage people to get pro-active about Ichthyosis, or whatever their particular cause may be. If you have something in your life that affects you the way Ichthyosis does ours, go out, and make a difference!!!


Tommy, the FIRST doll, traveled
all the way to KC
  We will be doing this again next year. We have some ideas on how we can make it a little bigger, in hopes of reaching more people. We hope to see you all there!!!

Wednesday, May 1, 2013

May is Ichthyosis Awareness Month!!


Ich-thy-o-sis: noun- a congenital skin condition that causes the epidermis, to become dry and rough like fish scales.
Ashlynne's type of Ichthyosis is called "Ichthyosis en Confetti"
This beautiful, smiling little girl is one of the many faces of Ichthyosis

In honor of May being Ichthyosis Awareness Month, I am going to do my part and share some knowledge, and tell a little more of A's story.
  Let me start with telling you some of what we deal with, having someone in our family that is affected with Ichthyosis.  A's skin does not hydrate itself, or retain moisture as typical skin does. Her skin, very red in appearance, will crack and bleed if moisturizer is not applied frequently. It also reproduces at an abnormally fast rate (about 14 times faster than the typical person if I remember correctly), which causes build up and stiffness of her skin, making bending and moving sometimes difficult. She does not sweat, making the heat very dangerous for her. Her bath routine takes about 1 1/2 - 2 hours a night, depending on how built up her skin has gotten throughout the day.  This routine consists of a long soak, to soften the skin, a good full body scrub, and ointments and lotions applied head to toe, and finishing off with wrapping the arms, legs, and feet in Saran Wrap so that the moisture is retained all night (hopefully preventing cracking). Some nights other things are added to the routine, such as "de-scaling" the scalp, and deep cleaning of the ears, because skin builds up in these places as well.  Some days, this can be exhausting for both her, and I.  She has dermatology appointment, ENT appointments, ophthalmology appointments, appointments with her general doctor, physical therapy, and we have also started her seeing a therapist so she has someone to talk to about being "different". The amount of appointments can be overwhelming as well.
  On January 14, 2003, I heard a word for the first time that would change the rest of my life... Ichthyosis. Ashlynne was born at 12:25 pm this day, and was loaded into a helicopter and on her way to Topeka, KS by 3:00 that afternoon, and the word that kept ringing in my ears was one I had a hard time even pronouncing, let alone understanding. The worst thing a parent of a sick child can do is get on the Internet to research, but I did this, and slowly it seemed as if my dreams for A that I had before she was born slowly started dying, and were slowly being replaced with things that my other friends that were parents would never understand. My dreams started to consist of her ever walking (which she finally did at 2 1/2, yay Ashlynne!!), of her making it through a night without itching so bad that she had scratched herself bloody, of her being able to run and keep up with the other kids at the park, of her having friends that would truly accept her, and her limitations, and of us being able to have a simple outing to Wal-Mart without stares and whispers.  I had to accept that my little girl was never going to play softball like I did, wouldn't be able to spend all summer long playing outside in the sun, would honestly never really be able to have a care free day, due to all of the care that her skin requires. It was, in a sorts, the death of a dream, of her having a "normal" childhood.
  But as soon as I allowed myself to grieve the loss of these dreams, and I picked myself up and did a mental slap in the face, I decided to get pro-active. I decided for us, "normal" was just going to have to be a bit different. I got on the Foundation of Ichthyosis and Related Skin Types website, and started researching anything and everything I could to try to make life a little easier for my little girl. I joined Facebook groups, registered with FIRST, and started reaching out to other people affected by this seemingly devastating disease. And by doing this, I discovered a whole network of these amazing people that could finally truly say that they knew and understood what I was going through.  I connected with other moms, young adults, and saw other kids living with Ichthyosis that were doing just that... Living!

Ashlynne, in yellow, with our friend Jordan, whom she nicknamed "Sister Salmon", in Denver, CO, June 2012


After the smoke cleared, I made up my mind to not be sad anymore. I mean, don't get me wrong, A and I both still have our days. But I have started to realize, that if looked at in another light, Ashlynne's Ichthyosis could in some ways be considered a blessing. I have learned a TON!  I have met and connected with AMAZING people that I never would have met otherwise who have inspired me. And I have helped other moms who have had questions, and sometimes just needed a shoulder to cry on.  Some of these people have come to be extended family for us. I have learned to love and embrace the things that Ashlynne CAN do rather than be sad about the things that she CAN'T do. And believe me, she can do anything she puts her mind to!
  There are amazing doctors, from general practitioners, to dermatologists, to geneticists, entire TEAMS of doctors that have dedicated their lives to researching Ichthyosis in hopes of one day finding a cure.  There are determined mother, fathers, and other friends and family members that work tirelessly putting together fund raisers to help fund this research, among many other things. And I have faith in them, that one day, if we all keep working together, there will be a cure.
  In honor of Ichthyosis Awareness month, my husband and I, along with FIRST and the Kansas City Royals, have teamed up to host the first annual "Ichthyosis Day at the K". We have sold 200 tickets (we sold out!!!) to family and friends, that will all be there for a fun day at the ball park, and also in hopes of raising awareness about Ichthyosis. We are very excited to say that Jordan will be flying in to Kansas to spend that very special day with us!

  If you are interested in learning more about ichthyosis, and FIRST and the research and programs they are involved in, or if you are interested in making a donation, you can visit the FIRST website for additional information.