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!