Thursday, January 10, 2013

"How's Kevin?" Well, thanks for asking!

    So hopefully, if you are reading my blog, you know about my best friend, since middle school, Kevin Swan. See this post here for the initial announcement about Kevin's diagnosis of ALS. This February will be one year since Kevin was diagnosed with ALS at Northwestern University in downtown Chicago. It has been a wonderful year, as Kevin has only slowly progressed in the disease, moved back to our hometown allowing me to see him multiple times a week, and the launch of his foundation, A Life Story. In the last few months, I have had more dinners and face-to-face conversations with Kevin than the last 12 years combined. What a blessing!

I love this picture I captured of Kevin. It was his first night at his new condo.
In this picture you see Kevin's first tattoo. Kevin described his tattoo as, "...representing everything from seasonality, strength, timelessness, shade, deep-rooted family, and a commitment to GROW."  Kevin intends on adding words and phrases to his tattoo. Let's be honest. Kevin hardly has any use of his arms and hands anymore. Putting a tattoo on his arm is an expressive way to still utilize them.

His Progression. Here are the answers to what everyone means when they ask, "How's Kevin doing?". Thankfully, he can still text and use his iPhone to communicate. Verbally, his voice has softened, yelling isn't an option but isn't his style anyways ;) His arms and hands are at about 5% use.  When we go to dinner, I always sit on his left so that I can assist him with eating. I'm learning way more about my best friend than I ever thought I would! For a second, put yourself in Kevin's position. His humility surpasses my expectations. Let me be clear, he is able to use both hands to eat a sandwich, it is the coordination of using silverware that is lost. He can't style his hair, eat cereal, or drink from a heavy glass. His muscles in his hands, arms and neck are wasting away. Visually, you can see his fingers curling, his drooping shoulders and skinny foreams. He wears a wrist support and often someone asks him if he hurt his wrist, after going in for a handshake. Oh, how I wish Kevin could say, "Yep, a basketball injury." Of course, Kevin finds the positive and uses every person's question as an opportunity to educate them on ALS.
    I'm sure everyone is wondering, how much longer can he walk? How much longer can he talk and swallow? Honestly, we have no idea. The doctors do not know and we do not care to speculate. There is no timeline or progression chart with ALS. In the beginning Kevin had fasciculations, or spasms,  in his arms and to this day he still has limited use. Since the first symptom it has been 2 years and 5 months. Is that good or bad? Hard to say. Since most people aren't diagnosed until years after their first symptom it's hard to gauge a "normal". The fasciculations have begun in his legs. This isn't good news. Sorry but at this moment I cannot find the positive. I must move on.

What Kevin cannot do does not define him.  It is what he CAN do that impresses me about him. He can FIGHT! He can BELIEVE. He can live every day to it's fullest, dream big, and work toward finding a cure to ALS.

Kevin's foundation is called "A Life Story" foundation. Kevin's vision is to showcase how ALS is effecting the lives of sons, daughters, mothers, fathers, wives, husbands and best friends. He is candidly sharing his own story and wants to record the stories of other ALS fighters. The purpose of sharing their stories is to create awareness, which in turn, creates funding for clinical research. This is Kevin's plan to cure ALS. If there is one thing I know about Kevin, it's not to doubt him. He is extremely capable of running a successful foundation. His time owning a production company in New York City and his experience as Singlehop's director of public relations, has prepared him for his title of CEO of his foundation. The goal of the foundation is to find the cure to ALS. I have no doubt that we will do that.  I'd appreciate your support, financially and through advocacy, on this journey to find a cure.

Here are 5 things that you can do right now to support our fight:
#1. Pray for Kevin! Pray that God continues to reveal Himself to Kevin. Pray that God helps us find a cure to ALS.
#2. Go to the website and watch Kevin's video.
#3. Find A Life Story Foundation on Facebook and follow us to learn about events! Our next event will be in May. Stay tuned! We are in the planning stage. If you want a task for our event, please email me!
#4. Buy A Life Story Foundation merchandise on the website! Sample pictures below. The branding and quality is impressive. We will be adding more merchandise soon!
#5. If you are a local, come to our events to show your support!
I love the branding that Kevin designed out!

These bracelets ROCK!

Koozie anyone?

Wine tote bags! =)

Kevin's amazing mom, Julie, who has been a ROCK throughout the last year! Her role in the foundation is CFO.

My hubby Ryan with Kevin. I am thankful for the amount of support that Ryan has shown Kevin!

Probably a lifetime favorite image of me and my bestie. I have accepted the role as Director of Awareness for Kevin's foundation. I intend to work diligently to find the cure to ALS.

Love his laugh and smile!
I took these pictures as a Christmas gift for Kevin's parents.

This is Kevin's brother Zack~ He is in his senior year at BU. It was so nice to have him in Bradenton for the full winter break. He's a gem.

Another picture that I cherish.

Brother's laughing it up!

I made Zack hug Kevin! LOL =)

Why so serious gentleman?

This got a good laugh!
If you made it all the way to the bottom of this post, thank you!!! I appreciate your support. I love blog comments, so please leave your thoughts. I'm sure Kevin would love to read them too.
With Love,

Tuesday, January 8, 2013

3 Years of Christmas as a family!!!

Above are the last 3 years of our Christmas card. To be honest, I hardly remember what a Christmas was like before having children. This was definitely my best Christmas yet! . Easton and Preston both loved going for walks with our wagon around the neighborhood to look at colorful lights and inflatable Santas. We had a magical Christmas Eve candlelight service, while singing Silent Night. Easton and Preston talked about baby Jesus and were quick to identify Him in our Little People Nativity set, Nina and Papa's life size porcelain Jesus, and in every, "true meaning of Christmas", picture book that we read to them. This is just the foundation of teaching our boys about our Heavenly Father and Savior. We look forward to raising our boys on the truths of the Bible and watching them grow in their faith.
Ready for our Christmas Eve Service at Woodland

Nina and Papa with their 3 Grandbabies!

Easton and Preston with one of their gifts

Christmas Morning!

EASTON! This is one of the first pictures taken with my new Nikon D600

Preston having a blast with this Grandpa!

Flying high with Grandpa!

Boys running outside on Christmas morning! Yes, they are wearing shorts! We enjoy our warm weather on Christmas!

Our dinner table ready for Christmas dinner!

It's a miracle neither one took a tumble!

Almost dinner time!

My best friend Kevin came over for a little Christmas wine! =)  More about Mr Swan coming soon!! ;)

Ryan and I on  Christmas Morning! This is our first picture together with my new camera! =) I love the sharpness of the image.

The Swan's came over right before the boys went to bed on Christmas night.

Easton adores his trains! He always plays with them at eye level to watch the wheels turn, so precious!

Oh no!! Believe it or not, he didn't fall!! He insist on running in Easton's path!!

Happy Preston!!

The boys' Great Grandmother gave them Radio Flyer Scooters. which were a big hit!


As for New year Resolutions, Ryan and I are both working on our fitness and health. Eating healthy and exercise is the basic goal for this year. Additionally, I will be blogging more and reading more. I have always loved this blog and although my post have been few and far between, I am ready to share more pictures and thoughts with you this year! Hopeful this year will be an exciting year for our family and we will have lots to share with you! I am currently reading To Kill a Mocking Bird for the first time. There are a couple of classics that I have neglected to read during my life. As a Language Arts teacher, I am convicted by this and setting a goal to read one book per month.

Thanks for following the Fulmer's Story!

Monday, January 7, 2013

Recap on 2012~

2012 an amazing year for our family!

Here are some of the highlights, with photographs ofcourse!

In January of 2012 we went to Animal Kingdom for the Ethiopia American World Adoption Reunion

The boys were apart of their first professional photo shoot for My Little Legs website, which my friend owns! Check it out, they have adorable accessories for babies and toddlers.

Memorial Day FUN!

Ashlie's Time in Africa, loving on orphans in Kenya and Uganda!

Our Beautiful Boys are growing up so fast!


Merry Christmas from the Fulmer's

We look forward to a wonderful 2013~