Memorial Weekend

We celebrated. That we did. We're pretty good at celebrating! Wanna know what we celebrated?! Our Poppop! He served in World War II on the U.S.S. Boise. He was a Navy man! I'm very proud, I love hearing all his stories and looking at the scrapbooks! Funny story, one of us bought him sweat pants from Old Navy one day. When we gave him them and his response, "Old Navy, like me!" He's hysterical!!

We had a party at cousin Laura's! It was pretty fun, great food from Master Chef Los, and a water fight!!

Probably the greatest picture taken that day, this is Adrianna! 

Sisters!

Dressed the part! 

If only Natalie's eyes weren't closed, but still a cute picture! 

Kiddies in line for Slip N Slide, Kayden, Anthony, Adrianna, Bailey

Nathan and Hannah playing so nicely! 

A GREAT family shot!  

Action shot! 

Krista's always holding a baby! This time it's Bentley! 

No comment! 

We had a water ballon toss!  Prizes: MONEY! 

And we had potato sack races! 

Steven fell, Kyle and Krista tied!

Great comparison! She's way more cute!

Hope everyone had a great Memorial Day Weekend!! We sure did! Remember why we celebrate, it's not just a day for barbecuing!

A Special Little Girl

Pulmonary Hypertension (PH). How many of you know what that is? I have to admit, I didn't know what it was until I met Molly. Pulmonary Hypertension is abnormally high blood pressure in the arteries of the lungs causing the right side of the heart to work harder than normal. It causes chest pain, shortness of breath, and the worst part of it all, there's no cure. 


When Natalie was in the hospital, we met the Dunne family whose daughter Molly was in the hospital for PH. Below is Molly's story: 


Seven year old, Molly Dunne, was diagnosed with severe Pulmonary Hypertension after collapsing on her first day of kindergarten in Sept 2010. She has had a long, difficult journey since then. A few days after she collapsed, she went into cardiac arrest and was placed on ECMO (heart-lung bypass). She was then flown from Delaware to Pittsburgh, PA and became the 2nd child in the U.S. to be placed on an artificial lung, called a Novalung. She remained on the Novalung for 25 days. During that time we learned Molly suffered a significant brain injury. We were told she may never see, walk, talk or do anything like a normal child again. We also found out that her Pulmonary Hypertension is due to Hereditary Hemorraghic Telangiectasia which is a genetic condition that causes malformations in blood vessels. She has been in rehab therapy for the past 17 months and is now walking with the help of a walker, saying a few words and most definitely sees everything around her. She has come so far. Unfortunately, her Pulmonary Hypertension has progressed. She is in heart failure and her lungs are very sick. She is not eligible for transplant and we are working with Palliative Care to try and make whatever time she has left the best it can be! Molly has an older brother Ryan, age 9, and a twin sister, Kate. Molly is dearly loved by so many. Both Pulmonary Hypertension and HHT are rare disorders and we want to get the word out to hopefully help prevent another family having to go through what we've been through.


I remember the first and only time I met Molly. I was tired of sitting in the hospital room so I went for a walk around the Cardiac Unit where Molly and Natalie were residing. I had seen this pinkalicious room several times and this time, the door to the room was open. I knocked as Molly's mom Kristen welcomed me in. I took a look at Molly and told her I loved all the pink, pink lights, a pink Christmas tree, pink blankets, pink stuffed animals, pink everything; my favorite color. 


Little did I know, that would be the last time I'd get to see Molly. I'm not sure which, but one of us got to leave the hospital first. I found Molly's Facebook page (click here) about a month ago. Molly had a bucket list circulating and everyone and their brother's mother was helping to fulfill this bucket list! I got to help, #42, I took Molly to the top of the Rockford Tower. 


Sadly, Molly's condition worsened very fast and she passed away May 17, 2012. Molly's legacy still lives on and is helping to raise awareness about PH. 


Sunday May 20th the day of the Buddy Walk, the Dunne family had asked everyone who could attend to join them at Molly's Elementary School to blow bubbles up to Heaven. Since we couldn't, I found a different way to honor Molly!


We wrote messages on the balloons

 And sent them on their way to Heaven!

 See that little tiny speck above the tree, that's one of the balloons.

If you would like to leave Molly and her family a message visit their CaringBridge website here!
If you would like to 'like' the Miracles For Molly Facebook page visit here!


Rest easy Molly girl! You are dearly missed! <3

Molly Dunne! <3
*Picture taken off her Facebook page*

  

Flower Market

Hannah had been asking me since the beginning of one week when I picked her up from school to spend the night with me. Clear outta the blue, she asked to spend the night with me. I think it's because she knows we'll stay up late while watching a movie and eating popcorn. So I planned for just that to happen. She spent a Friday night with me, we stayed up late to watch Tinker Bell and Ratatouille while eating our her popcorn. Yup that's right, I got about none and I was happy with that. I cherish the nights like those for I know she won't want to do that in years to come.

The following morning, Mumsie decided she wanted to take Hannah to the Flower Market. So off we went. Right before we left, I knew great photo ops would arise so I grabbed my sisters camera.

 After ten minutes of searching for a parking spot, another ten minutes climbing the big hill to get to the Market when we could have just walked around, which I might add we didn't know at the time, we had arrived. First stop, the cool looking PNC Tent. Might I add, IT WAS COOL! She got to play dress up, got her picture taken, played some interactive games of matching and putting coins in piggy banks.

Oh and I can't forget coloring a butterfly.

My next stop, climbing the 129, yes 129 steps to the top of the famous tower in Rockford Park.

Just so I could get an amazing shot of this amazing view! 

 And wave hello to mom and Hannah too!

 And I of course, worked on some photography shots, like this old window with a cob web.

 That's it. That's the tower I hiked up.

We had to get tickets, might I add expensive tickets, so Hannah could ride rides as she asked to do.

 Okay, admit it, you know your thinking this is a classic bench that's awesome.

I got lucky, she was taller than 36 inches and I didn't need to ride on the kiddie rides with her. She didn't even need my help getting on them. 

 She just needed me to hand her the correct about of tickets and point her where to stand in line at. Since when did she grow so fast?!

 Seriously, she's adorable. <3

She flew in a fish

 And she rode a motor cycle because she's like her daddy

 Oh and we went in this crazy house type thing. Did I mention, I'm terrified of these things? Did you hear me, TERRIFIED! But she wanted to go on it, so we did. I refuse to post the pictures of us on it, so let me just put the picture into words. We had to walk up the ramp, climb the rope net, wrestle our way through giant rubber bands, and then...walk over not one but two of those bridges that aren't stable and wiggle. That's when I tightly grasped the netting while a certain fearless girl was a good five feet ahead of me, and then got to go down the slide!

 The slide was about the only part I thought I would like...until I got it in. It was small and not slippery like a slide. But she sure enjoyed it.

Mumsie insisted we go to the Duck Pond. 

 You pick three ducks, add the total of the numbers on the bottom, and you're guaranteed to win a prize. Might I add it's a stuffed animal prize. Something my sister despises of. But it was a day about Hannah, so Mumsie paid the three dollars for Hannah to do it.

We went on the Carousel, she picked about the ugliest cat to ride on, I got dizzy, but we got this awesome photo of us out of it all! <3 

We went on the Ferris Wheel, another ride Auntie Kell is scared of. But Hannah enjoyed it, I think, she just sat there quietly. And I got this amazing photo out of it all!

 And we finished our day with ice cream!

The perfect ending to the perfect day!

Wondering

I'm sure some of you might be wondering why I haven't posted since May 4th and your searching for Buddy Walk pictures and all my instagram uploads, I promise they're coming. I just finished my last final of my sophomore year of college, scary to think I'm a junior, half way done and half way closer to entering the real world (insert scared face). And as per a fans request I think I might make a fabulous video of the walk!!!! Plus my laptops in the shop :( my memory card from my camera wasn't reading on my laptop so I had to get it fixed. Once it's back, be prepared for some serious blogging! Enjoy tomorrow, do something you hadn't planned on! Comment and tell us what you decide to do! Ta-ta for now! ~auntie Kelly

Melting Heart!

I was going to put this story into a quick, short and simple to the point Facebook status update, but this story is too cute I just can't!

I hope this story touches your heart just as much as it touched mine, and my sisters as well!

My Aunt Sue works at my old high school as a Spec Ed teacher. We agreed to run a bake sale two Friday's each month. We would split the money, half to REACH and half to Natalie's Crew. Today, Shawn and the girls were able to meet us at the bake sale and show off the girls and hopefully draw in more people!

We got there around the same time, I set up while she got the girls situated. There was five minutes before the lunch bell was about to ring, which is when the DAP (Delaware Autistic Program) students quickly run down and get there lunch. There was one girl in particular who stared at Natalie. You could tell by her face she wanted to come over and say hello and see Natalie. I wanted to say hello and signal to her it was alright for her to come over, but her teacher was signaling for her to come get lunch. Five minutes passed....

Time for the students to walk back to their classroom to eat lunch. The girl who stood there staring stopped and said hello to me. Luckily, I remembered her name and perhaps made things a little less awkward for her! She quickly ignored me and began talking to my sister who was holding Natalie at that point.

Our conversation went a little like this:

Me: Hello Marie!
Marie: Hi.
Marie: Who's baby is this?
(I gestured toward my sister)
Shawn: She's mine, this is Natalie and that one over there is Hannah
Marie: Does she...she looks just like my brother
(Awkward pause)
Kelly: Does he have Down syndrome?
Marie: Yes
Shawn: Natalie has Down syndrome too!

Pause!...You could see her brain turning and my sister claims to know what was coming next...

Marie: Are you sad?
Shawn: That she has Down syndrome?
Marie: Yes
Shawn: No!
Marie: Well were you at first when she was born?
Shawn: Maybe a little, but we're very happy!
Marie: Oh, okay. Good bye!

My heart had tears. Happy tears. Marie made a wonderful connection. And you couldn't help but laugh when she asked Shawn if she was sad!

There was this other girl standing behind Marie admiring Natalie. I don't know her name but our conversation went like this...

Kelly: Hi!
Shawn: Hi!
Girl: Hello!
.......
Girl: Well who's family are you?!?!
(We chuckled)
Kelly: (Pointing to Shawn) This is my sister and there's are her two daughter's Natalie and Hannah!
Girl: Okay, bye!

After those two short minutes, the rest of the kids were walking by with their lunches and their teacher. They all had pure excitement on their faces! This little baby, was someone like them!

Aunt Sue came back after delivering lunches to her kids. We talked about the conversation we just had with Marie. As Aunt Sue told us, Marie did Teen Night along with Kyle. (Kyle is our cousin with Down syndrome) When Marie noticed Aunt Sue there, she tapped Aunt Sue, pointed to Kyle and asked "Is that your son?" "He looks just like my brother!"


I just had to share that story with you!! Marie melted my heart! Today was good!

Our week!

 My mom watched Natalie one day, she was fussy. Her and I have a special song, even though mommy and daddy sing it as well. It consists of me repeatedly saying Ba. I learned it at school. Like when Hannah was younger, she too had a song that whenever you turned it on, she calmed down. Natalie has it too! I feel like it's a very special bond her and I have together. The way she lays in my arms, looking up at me, into my eyes, it makes me heart melt!

I had Hannah one day, I had picked her up from Lunch Bunch at pre-school. It's our new Thursday routine, and I enjoy every minute of it! She loves to color on the door with my dry erase markers and I love to just sit and stare at her.

 This was her creation. It's beautiful!

 And you see that big circle with two eyes, a nose, a smile and one ear?! She drew that! Yes my little baby drew a smiley face. Seriously, since when has she been able to do this. I've noticed lately she's getting older, she's discovering more things, putting two and two together. She gets it.

 All smiles for Auntie Kell!

 We enjoyed a lunch with Mumsie at Cracker Barrel!

 She loves it when I put the camera on my phone facing her!

 On Saturday, we went to the Lady Bug anad Bud Festival in Milford, DE. Lots of vendors, yummy food, and horse rides! I completely loved it and was getting on and circling the small area twice even if a child didn't want to go with me. I have a secret obsession with riding horses! I participated in a week summer program dealing with horses. I loved it. This brought me back to my child hood.

 Surprisingly, I don't know if Shawn was, but I was surprised she got on by herself! She loved it!

 This guy, I don't even know your name but Thank You! You were awesome! Sitting Hannah on your lap and allowing her to pet the pony!

 Even took Natalie on! It didn't really phase her. She wasn't over excited or fussy, she was content!

 Since we were so close to the beach, why not go? It was us girls, so we had a blast! We went straight to Arena's for lunch! Remember how I said Hannah's amazing me at the things she's learning...here's one! Shawn hangs her school art work on the big mirror in the living room! It's quite nice and I've come to realize she's getting better at coloring inside the lines! Just look at my girl!

She randomly walked up to this tree and hugged it. And hugged the next one and the next one and the next one!