Friday, May 23, 2014

JA Spotlight–Rylee

Last year at our local Arthritis Foundation’s Spring Walk I met the sweetest, most inspirational young woman named Rylee. I remember standing there with my Monkey when a woman approached me, a woman I’d never met. She started talking to me and telling me about her daughter (Rylee) and how our kiddos see the same rheumatologist (Dr. Kietz). She started to share their story with me. How Rylee went through months of pain and frustration before getting her diagnosis because they live in West Virginia (one of the 11 states who still does not have a pediatric rheumatologist). She told me how once they heard about the walk Rylee was determined to meet a fundraising goal and guess what, she not only met her goal but she exceeded it. What she told me next brought me to tears. You see, I had set a lofty goal last year since Monkey was an honoree and while I had come close to our goal I hadn’t quite reached it. I was ok with that though…I mean, I did the best I could for our first walk. But guess what. Rylee didn’t want to see us not reach our goal…since she had already met hers she wanted to make sure Monkey reached his his as well. She donated the exact amount we needed to reach our goal! It truly blew me away that at only 13 years old Rylee was so selfless and kind. (I mean, let’s be honest, most normal 13 year olds don’t think about much besides themselves.) I immediately sought Rylee out and gave her the biggest hug with tears in my eyes.

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(Here are pictures of us meeting Rylee and her mom, Jen, at the Walk last year.)

Today I’m sharing Rylee as JA Spotlight because this girl continues to amaze me. I see in her what I hope that Monkey will grow to have. This girl won’t let JA slow her down and she’s got her mind set to make sure everyone knows about JA and what kids like her and Monkey go through. Rylee was chosen as one of this year’s walk honorees and boy does she ever deserve that honor! This year she set her fundraising goal even higher and guess what…she has raised over $8,000! She’s also done so much advocating that she was invited to be part of the Arthritis Summit in DC in March and recently was honored by Pittsburgh Mayor Peduto. She even got the attention of the local new station! (You can watch that feature here: http://pittsburgh.cbslocal.com/video/10177699-mayor-peduto-honors-young-arthritis-advocate/)

I recently wrote to Jen, Rylee’s mom, congratulating them on all they’ve done and asking to feature Rylee on the blog. When I asked her to share her thoughts here is what she had to say:
I am glad that she has decided to hit this disease straight on.  Her strength is an inspiration to me as well.  Just a short time ago, she was afraid to tell anyone for fear that she would be treated differently.  We have had many discussions and tears in this house about this disease and why her.  She has now accepted this and wants to become the voice for everyone that is either scared or embarrassed about having this.  Our goal is to make everyone more aware of juvenile arthritis and what these kids go through.  If we don't speak openly about this, things will never change.  She is all about changing the way we view this disease and educating people about its existence.  With her standing up to it, she has had more people come out and say, "that's what I have".  She doesn't want anyone to feel sorry for her but to join her on her journey of reaching for a cure. 
As a mom of a JA kiddo I am so incredibly proud of Rylee. She has shown show much poise and strength and she is truly such a wonderful role model for other JA kiddos. I pray that I can remain in contact with Rylee and Jen and that someday when Monkey is older he can lean on her for support…the kind of support only some one who’s experienced the same things can offer.

Tuesday, May 20, 2014

Discover Columbus Giveaway! Adventure Awaits!

Blogging has opened a whole new world of opportunities and friends to me and my family. I’ve been so blessed to take my family on some amazing adventures and I’m so excited to share the biggest one yet with YOU!

Recently I was asked to be a part of a Pittsburgh Bloggers Weekend in Columbus, Ohio as part of the Convention and Visitor’s Bureau’s “Roar and Explore Adventure Getaway” campaign.  I cannot wait to check out all the fun and exciting things to do in Columbus with my family. Even better is that I’ll get to do it with some other awesome local bloggers! My Pittsburgh blogging momma friends Nadine (The Pittsburgh Mommy Blog), Nicole (Champagne to Crayons) , Kelly (Pgh Momtourage) and Becky (Lil’ Burgers) will be there with their families as well.  And, it gets EVEN better! The Ohio Convention and Visitor’s Bureau has given me a package so YOU and your family could WIN a weekend getaway to Columbus too! Exciting stuff, right?!  Check out all that’s included in this amazing giveaway:

A two night stay at participating Drury Inn & Suites (the preferred hotel of the Roar and Explore Adventure Getaway) offers special amenities, including: free, hot breakfast and evening snacks; indoor pool; and complimentary wireless Internet. Other Hotels are available, but prices may vary by location.
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Four passes to the Columbus Zoo and Aquarium, ranked the No. 1 zoo in America, unveils its 143-acre Heart of Africa exhibit May 22. Visitors can stand face-to-face with giraffes and feed them a snack; get up-close with lions as they board a grounded airplane; and take a camel ride in the Zoo’s newest and largest region. This stunning new exhibit is home to 150 animals and adds even more reason for travelers to visit the place famed zoo director Jungle Jack Hanna calls home.
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Four passes to Zoombezi Bay, the world's only waterpark inside of a major zoo, opens Baboon Lagoon this season. Ideal for younger kids, this active play land boasts eight water slides, fountains and a 1,000-gallon bucket dump. Beyond Baboon Lagoon, guests can splash and scream through 17 twisting waterslides, extreme raft rides, headfirst racers and the hair-raising 209-foot Cyclone, the world's largest reducing-radius slide. Zoombezi also offers the more laid-back, adults-only Crocktail Creek, a lazy river where moms and dads can relax.
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AND four passes to COSI, the nation's top science center, celebrates its 50th anniversary this year by hosting The International Exhibition of Sherlock Holmes. Brand new this year and running only through September, guests get their own book full of clues and can join master detective Sherlock Holmes to participate in experiments and stay hot on a trail to crack a new mystery. In addition, COSI visitors can ride a high-wire unicycle, use sonar technology and get wild with loads of other hands-on activities that make science fun.
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Want to win this awesome giveaway? Just click on the entry form at the bottom of this post! Yup, it’s that easy! And don’t worry, if you aren’t the lucky winner the Convention and Visitor’s Bureau’s is offering an amazing rate for their “Roar and Explore Adventure Getaway” package!
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* Winner will be announced on Thursday, May 29th. Winner will be chosen at random by Rafflecopter. Winner will be announced on Facebook and notified via email so please provide an email that you check regularly. Winner will have 48 hours to respond or another winner will be chosen by Rafflecopter. Prize package was provided by the Ohio Convention and Visitor’s Bureau. All thoughts and views on these attractions posted by me are my own. *

a Rafflecopter giveaway

Monday, May 19, 2014

Bittersweet Moments

Monkey had his 7th Enbrel injection yesterday. Seven weeks of giving him a shot every Sunday evening. Last night was different…last night my beautiful, brave boy sat like a champ in my lap and didn’t cry a single tear.
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When hubs was finished giving him the injection I hugged Monkey sooooo tight and fought my own tears. I told him how proud I was of him and how brave he was. He looked at me with a smile and said, “Momma, I didn’t cry! I almost did cry one tear but I didn’t!” Even his brothers were pouring their praise on him, “Wow! You did great! I can’t believe you didn’t cry! That’s so awesome!”
After the freeze pops were handed out and hubs and I had a moment we both shared our thoughts. We were so very proud of him but at the same time a little sad. It’s hard to explain the sad part. I think it’s because our hearts still break that this is his life. We are thankful that he’s gotten to this point and pray that it continues to go so well for him but our hearts are also sad that this is now his normal.
The sad thoughts are small ones though. I am so very thankful this change in medication is working so great for him. I’m thankful that the doctors listened to my concerns and made the switch. I’m thankful that my boy has been blessed with a brave, warrior heart and spirit. He’s a fighter and some day no one is going to want to mess with this kid! My beautiful, brave Monkey. <3

Saturday, May 10, 2014

Momma Moments

Things have been crazy busy around here. Since my word for this year is “FOCUS” I’ve been applying that full force to my photography business AND my job as momma. I know once I get the hang of things that I’ll be able to find a better balance that includes blogging regularly again but right now I just have to go with how the wind is blowing.

In honor of Mother’s Day I wanted to take a few minutes to share some momma moments with you. Moments that bring me back down from the crazy cloud and remind me how amazing my life is and how truly blessed I am. Here are some of my moments from this week…I hope they make you smile….

Because of above referenced craziness I’ve been a little more frazzled than normal and I’ll admit, on edge more than I should be. Monkey has snapped me out of this though on more than one occasion with his latest habit. He will randomly walk up to me and say, “Momma, you look pretty.” He’s already learned that a sweet compliment diffuses a frazzled woman.

Zim is one of the most inquisitive kids I have every met. He seriously has a question for everything. If you use a word he doesn’t know he asks what I means (same with if he hears it on a TV show or on the radio). Sometimes the questioning drives me batty…you know, when he asks why I won’t let him have something or do something then asks when I WILL let him. I remind myself that with each question he’s learning something and that is an amazing thing. Besides, it’s hard to not smile when this face is looking at you…I mean, look at those freckles! love

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And then there are the baseball moments…Bub loves his ball and boy am I a hardcore baseball momma. I mean, the coaches had to move a game to Sunday (Mother’s Day) and was worried the moms would all be upset with him. Not this momma…there’s no where I’d rather be than watching my boy play his heart out on the field.

This past week Bub had a late game so all the boys went to bed at the same time. That meant a big ol bedtime pile up in our bed. I laid there on my back with all three of my boys snuggled close in my arms. As I listened to their prayers and giggles I wished that I could make that moment last forever. They took turns telling me who loved me more and covered me with kisses and bear hugs. So, so blessed.

Happy Mother’s Day mommas!

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