Saturday, August 24, 2013

Bye bye dog days, hello school daze

Gavin and Ashlynne on their first day of 2nd & 5th grade
August 20, 2013
Well another successful summer is in the books.  While I always welcome back the routine that the school year brings, I am always sad to see yet another school year start because it is yet another reminder that time passes too quickly.  How is Ashlynne already in 5th grade?!?

The first week of July we shipped the older 2 off to spend a week in Lincoln, NE with my great aunt.  They always love the time they get to spend with Aunt Lois and always come back incredibly spoiled.  They got to go to movies, shopping, Chuck E. Cheese, and the Children's Museum (twice).
Breckyn kept calling the goats at the petting zoo
"Little Horsies"
 At the end of the week, Russ and I headed up with the you get two and finished off the week with a trip to Omaha's Henry Doorly Zoo.  I have heard so many good things about this zoo, and let me tell you, they are all true. This place was amazing! They had a petting zoo, train rides, a carousel, and every kind of animal you could think of. The kids loved the monkeys. They had more kinds of monkeys than any zoo I had ever been to. And some I had never even heard of.  My favorite part was the butterfly pavilion.  Breckyn LOVED the petting zoo. Logan liked the train ride. Ashlynne of course loved the bugs, as did Gavin.  And I'm fairly certain that Russ's favorite part was lunch!!!

The end of July/ beginning of August brought fair week to Abilene, which is always a fun time for the kids.  The week starts off with the parade, and the carnival lasts all week. We went and watched cousins show their goats and sheep, and went to the Demo Derby.  Breckyn got to ride her first carnival ride, and Ashlynne walked away from the games with a HUGE stuffed dog.  But the icing on the cake that week was that Lex was in town.  Ashlynne and her have a special bond, so she was very excited to see her.  Breckyn hasn't seen her since she was a baby, but we talk about her so much, that Breckyn went right to her and didn't skip a beat...  Not that Breckyn is shy with ANYONE!

Gavin, Ash, Logan, and Breckyn
Henry Doorly Zoo
July 14, 2013

Logan, Ashlynne, and Gavin at Fritz's
At the close of summer we decided to take a trip to celebrate Gavins birthday, and have one last hoo-rah for summer.  We went up to Kansas City for a long weekend with some friends who have a little boy around Breckyn's age.  our first stop was a cute little diner called Fritz's Railroad Cafe.  The kids LOVED it. They got little conductors hats, and a train brought us our order. A little boy's paradise! That night we stayed in a hotel close to Oak Park Mall so mom could do a little shopping. The kids had a pool so they were fine with that! The next day we got up and went to Legoland and Sea Life Aquarium. I seriously could have spent all day at Legoland.
Breckyn on a giraffe made of Legos
The kiddos at Sea Life
This place had entire mini towns made out of Legos.  The aquarium was a hit too. My kids are such animal lovers, that those kind of things never get old to them. And I was impressed that we made it through both places without any of Breckyn's famous epic meltdowns!!!  So all in all, it was a good day. But it was far from over. Our hotel for that night was at Coco Keyes water park.  I don't know who had more fun, the 5 kids, or us 4 adults.  Either way, everyone slept very well that night!


When we retuned home, it was time to take Logan back to his mother, and back to reality for the rest of us...ie, school shopping! While most of you reading this know how much I love shopping, I do NOT love it with a 2 year old...  Ashlynne called that shopping trip the worst one EVER!, was even in tears at one point, and instructed me to take Breckyn to the sitter next time so we can shop in peace! I think I will take her advice on that one!!!  All in all, we had a great summer, full of memories that I hope my children will cherish as much as I do.





Thursday, August 15, 2013

Birthdays, and life's greatest blessings

Tomorrow when Gavin wakes up, he will be 8 years old.  I can not even put into words how this makes me feel.  Every time one of my kids's birthday rolls around this overwhelming sense of nostalgia seems to rush over me.  I have heard it said countless times by other parents, but seriously... Where has the time gone?

While it is nice that my older two are now MUCH more self sufficient and can now do things to help me out, such as folding laundry, and vacuuming, I would trade that for being able to make time slow down, for being able to make those precious moments last just a bit longer.  Time is the one thing on this earth that money can't buy.  I wish I could bottle Gavin's laughter, or somehow preserve one of Ashlynne's sweet kisses. Because I know that some day, that laughter will be saved for his friends, because mom will no longer be funny, and those kisses, they will be saved for a boyfriend, or only for me when no one is looking. I wish I could stay up all night, and just watch them sleep, because I know overnight, they will have grown just a little more.

Tonight, when we were driving to dinner, I overheard Ash and Gavin talking about their friends. Ashlynne was talking about all of her best friends, and I was teasing her, asking her how many "best friends" she had. Gavin piped up and said, "I only have one, and it's Mom".  It seriously made my throat close up, and my eyes fill with tears. In times when they frustrate me, and make me want to pull my hair out, these are the moments I hope I always remember.  When Breckyn is throwing one of those lovely "terrible two" fits, I stop and tell myself, this too shall pass. But the trade off is that she, too, is growing up way too fast.

To all of my friends with young children: stop, take a deep breath, and enjoy it.  Time really does fly.  I know that I am a better person because God has blessed me with these amazing children.  Being their mommy has been the greatest joy of my life.

Happy birthday, Gavin!  I am so proud of the amazing young man you have become!!!

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.


Wednesday, April 24, 2013

The closest thing to a political/religious rampage you will ever see out of me!!


I generally don't make a habit of getting overly political, or religious in a public forum. But I saw something today that really got to me, and sent me smooth over the edge. It was a quote that was aimed at both religion, and politics.  So here is my disclaimer: If you don't want to hear my political views or religious views, DO NOT PROCEED!!!

I was on Facebook today, and with the new addition of the "share" button, I was weeding through the endless pictures, videos, and relationship quotes that everyone seems to be flooding my news feed with, when I came across this little gem. It was a quote someone had "shared" that stated this: 
"If you don't want your tax dollars helping the sick and poor, then it's time to stop saying you want a government based on Christian values."

I do not even know where to begin on all of the things that are so wrong about this statement. Let me start with the one I feel the strongest about.
1.) I can honestly say that I, along with a great majority of Americans, have no problem helping the LEGITIMATELY sick. In fact, that is what Christ urges Christians to do. The problem being that too many people have abused the system, making it harder for those that are truly sick to receive the help they need. 
2.) As far as helping the poor, there are so many programs out there to HELP the poor, that this argument is not even valid.  The problemis this: what do you define as HELP?  I view help as aide. I do not view help as giving someone handouts over and over again until they are living more comfortably than me. I believe that as a society we should be helping people in a "help you get on your feet" type of way, rather than a "let me carry you on my back" type of way. 
3.) And last but certainly not least, the Christianity argument. Being a Christian means showing love, not judging someone for sinning differently than you, because we are all sinners. It means helping people grow, thrive, and doing your best to help make a positive difference in people's lives, and living like Christ urges us to live. We, as Christians, are to use the gifts that God has blessed us with to better this world. It never states in the Bible that we are to sacrifice everything we have so that others don't have to make sacrifices. In fact, the Bible teaches to waste not. Live within your means. 

I have had a job since I was 14 years old. At 14, I got my first job when I started working at the little dry cleaners here in town. I have always had a job and have been paying taxes ever since. I am well aware that all of those tax dollars have been spent on salaries, roads, law enforcement, and yes, government assistance, among many other things. But I can honestly say, that as an adult, I would work extra hard to make sure that that 14 yr old girl down the street isn't working to help pay my bills. Where is the pride in that? Where is the honor? I want to know that I have worked hard for the things that I have.  Have I had help in my life? Sure. I was a single mother, working full time, and my parents helped me quite a bit. I will forever be grateful to them for that. And yes, I understand that not everyone has that option, but that is where the HELP comes into play. Let's take a good long look at what we all define as "help". Because at what point in time are we no longer helping the person, and do we start enabling them to stay stagnant and stunt their growth?  Yes, let's help those struggling people, who might need temporary aide for whatever reason. But let's HELP them. Let's help them get on their feet, and learn to be productive, independent members of society.

To elaborate, the person that posted this quote has a college degree, and continues to work fast food because she does not want to lose her assistance. To this I simply say: what a shame. What a shame that we, as a society, have accepted this, and allowed this behavior by a large percentage of our society.  What a shame that too many people in this nation do not understand how good it feels to say "I did it". What a shame that it is now considered un-Christian for those of us that are willing to say that this is not ok. 

Monday, January 14, 2013

Coming of age?

I have been thinking about starting a blog for quite some time now... Not because I think I have all of the answers to the mysteries of the universe, but because I believe everyone has a voice that needs to be heard.  Whether it's heard by a few, or a million, everyone has something to share.

My life has been a bit of a roller coaster the past 30 years and has turned out to be nothing like what I had mapped out. I mean, I always knew I wanted to be a wife and a mom, but the route I took to get to my own personal happiness was nothing like I expected.

My oldest daughter, Ashlynne, is turning 10 today. It's unreal to me that my baby has now hit the double digits.  As I reflect back over the past 10 years I have to admit it is nothing like I pictured it would be.  Most people when they think of the birth of their first child remember so many happy thoughts and feelings. While I have some of these, I have many more memories of being scared and alone. While I was not completely alone because I had very supportive friends and family, the person I wanted and needed the most, my husband at the time and A's father, was in no way the loving supportive husband that I hoped to have. I am in no way saying this in a malicious way, let me make this clear. We were young, 20 and 21 at the time of her birth, and I'm sure he was as overwhelmed and scared as I was.  But it was during my pregnancy and after her birth that I learned how easy it was for him to walk away. I won't go into all of the details, because honestly, they don't matter, they don't change the outcome, he would still be gone from our lives, at least in the capacity that I had dreamed out.

When A was born 10 years ago today, I heard for the first time in my life the word "Ichthyosis". This would be the first of many times I would hear new medical terms, but Ichthyosis, from this day forward became a part of my every day vocabulary. I could go into all of the medical terms about this disorder, and I'm sure in later posts I will, but today, I will sum it up by saying that Ichthyosis is a rare skin disorder. It varies in severity, like any other medical condition, and every case is different. But it is so hard to explain in words how deeply it has affected my life.  Yet, I have not allowed it to define mine, or A's life.

As I reflect back,  I realize how fast the last 10 years has gone. I literally feel like I went to sleep one night, and woke up, and this baby that was here yesterday is now officially a "tween". Gone are the days of Care Bears and Hannah Montana, and here are the days of gossiping about boys and the "know it alls" at school!  I am thinking back, and telling myself how much she has grown up, then it hits me, it is I that has grown up as well. From the day she was born, I have grown from a young adult trying to find my way, into a mom.... And I could not have asked for a better teacher, friend, sidekick, and daughter. There is no one that I would have rather had by my side on this journey. Happy 10th birthday Ashlynne.  I love you more than all the grains of sand in the world!!!!!