The Big Event is finally here! We've been looking forward to this weekend for so long! The kids have kept asking, "How much longer until Dance Marathon?!" Eden has been looking forward to dancing and hanging out with the college gals. Oliver has been looking forward to The Best Buy game room... of course! I made Oliver's poster this year with some of my favorite photos of him and a bit of his story. The dancers and families could go out and read through the posters reminding them of why they are doing what they are doing. Why they are raising money and dancing for 24 hours! FTK -- FOR THE KIDS!
I have to say that I really didn't think Oliver would be here this year. The FACT that 90% of children with DIPG pass within the FIRST YEAR of diagnosis has been on the forefront of my mind. This past year has been difficult not knowing if this will be the only Dance Marathon he will attend, the last birthday he will have, the last Christmas he will celebrate here with us. At the last DM, he was still undergoing his 6 weeks of radiation and it was all so new to us. It was sad to see so many families there. So many children -- so many stories -- so much heartache. This event takes us away from it for a night... as far as we can realistically get away from it. It gives us a night of celebration and fun. It reminds us that there are good people out there that care about our children and want to make their journeys as easy and as pain free as possible. Dance Marathon is a 365 day fundraising event with funds going to help pediatric cancer patients and their families at the University of Iowa Hospitals and Clinics. Music, dancing, speakers, food, crafts, video games, fun and remembrance are part of the celebration.
Last year we kept to ourselves, partly because we were new and out of our comfort zone and partly because we didn't really know what was going on! We don't attend the events they host throughout the year to meet other families because they are all on Sunday, which is an important day to spend with our families avoiding the recreation we can do the other six days of the week. Since Oliver is not currently on chemotherapy, he is not in the hospital and therefore doesn't meet other children or families there either. Don't get me wrong, I'm glad he's not in the hospital, although I'd gladly spend time there if it meant he had a greater chance at beating his cancer. It's been lonely in that aspect, not having other families that have a deeper level of understanding than others to talk to and gain support from. There are no support groups in my area, unless we travel 3 hours round trip to Iowa City. Anyways... this year I told myself I was going to 'put myself out there' a little more and talk to people. I want a connection. I NEED a connection. I'm desperate!!! Just call me, Desperado. ;o) All joking aside... I am in want of someone that understands. So we met a few people this year, students and families, and hope to get to know them a little more. I'd love to help start a Dance Marathon here at the University of Northern Iowa in Cedar Falls, which is my hometown. All in all... it was a great night and I'm so glad that Oliver was able to be here for it this year!
This year's theme was Dr. Seuss!
Oliver and Dad
We brought Jaren this year and thought that he would enjoy it, which he did immensely! Finny stayed with Grandma and Grandpa Palmer so we could do as much with the older kids and stay up later with them! Uncle Chad and Jaren blowing bubbles!
Eden and Mom
My dear husband!
Uncle Chad reading Jaren a book in the comfy corner!
Eden getting all glamed up in the dress up corner
Love the look on Jaren's face!
Jaren and his 'milky'
The Wish Wall -- where do you want to go? I wrote 'Norway', Ed wrote 'Southern California where it doesn't snow' and Eden said, 'Disnee Land'!
Chatting with Woody, who got Ollie's Christmas surprise together this Christmas!
Crazy Grandma Young and Ollie! I love his dimple!
Waiting in the hallway before the family introductions kicking off the big event!
Jaren, age 3 1/2 was treating a few onlookers to some sweet breakdancing moves!
Jaren, age 3 1/2 was treating a few onlookers to some sweet breakdancing moves!
Jaren and Oliver playing Lego Batman
Jaren and I spent about an hour alone together in the upstairs Family Lounge where there were many kid friendly activities -- large inflatable, karaoke, mini golf, reading and movie corner, dress up, game table, concessions, crafts and more! He loved playing golf and we also got a sno-cone to cool down as well!
Bear, Ollie and Uncle Chad with his awesome ring! I think Oliver had about 5 sno-cones that night!
Jaren whispering something in Oliver's ear and Ollie trying to steal a bite of sno-cone... priceless!
Wrestling with Sully
Oh no... Sully's in a head lock or is that a sleeper hold?
You can see the decor of the family lounge. So fun to see the attention to detail and all of the artwork!
Jaren getting all comfy cozy...
...Daddy had the same idea. :O)
Grrrrrrrrrrrrrr...
Eden and her new friend, Alyssa!
Eden was hamming it up with these girls, singing her heart out! She LOVED all the attention and was in need of it since she's been feeling left out and forgotten about. She's my big girl and can fend for herself for the most part. She really needed the love and fun they gave her. She had a BALL! Thank you, girls!!!
Chad and Jaren getting into... 'Trouble'! Chad, you are blinding me with all that bling! ;o)
Game piece finger nails. Almost as cool as black olive fingers. :O)
Oliver watching 'Horton Hears a Who' in the comfy corner with some new friends!
Eden fell in love with Kathryn! What a sweetheart! Singing until one in the morning... Eden's dream come true! Karaoke Dreamin'! ;o)
"Tell us why you dance"
Oliver's pillowcase
The main ballroom where the dancing takes place
The Best Buy room -- where Ollie played until 5 am with my brother, Chad!!! The people in the gray shirts are spirit dancers and we had just finished sharing our story with them. I had the opportunity to talk with a woman who was there for the first time with her son who was a U of I student. She was very sweet and really admired Ollie's strength.
Ollie playing soccer with his new buddy, Katelyn. Her and her mom were so sweet! He met a few students that played games with him throughout the event! He had so much fun!
Eden showing off her sweet dance moves in 'Just Dance'! I think a few girls even got video of her shakin' her groove thang! ;o)
The kids had just met this little girl like an hour before the event ended!
The kiddos doing some crafts at the craft table. I met this little gal on the left and her sister, who is a cancer survivor. They were so stinkin' cute!
Katelyn grabbed Oliver to dance during 'Power Hour' the last hour of high energy dancing at the event. He lasted a little while and then started feeling really hot so I took him out to hang out with Uncle Chad.
My favorite picture of the night!
Katelyn (Ollie's soccer buddy) and two other sweet girls we met at the end that took Eden into the dancing crowd! It is so neat to see the love and care they have for our kids! I get so emotional just thinking about it. Get a load of Eden's glow stick 'earrings'! ;o)
Eden had planned on meeting back up with Kathryn and Alyssa for 'Power Hour' to dance. When the time came we couldn't find them and Eden was devastated... she started crying. I know she was so looking forward to seeing them again, so I told her we would find them. I spotted the dark blue shirts front and center of the main ballroom, right in the middle of the craziness! With the help of our new friends, they led us right to them. Eden was ELATED to say the least! Can you tell?!
Kathryn, Eden and Alyssa
Herky getting into it!
Kathryn, Eden and Alyssa
Herky getting into it!
Last year's total was $1,058,568
This year's total was $1,220, 146.17!!!
FTK!
FTK!
FTK!
This year's total was $1,220, 146.17!!!
FTK!
FTK!
FTK!
After the total was announced and the celebration calmed down, we watched a highlight video of the event and finally a remembrance video of the children that have passed away. Last year I cried. This year I sobbed. I sobbed through the video. I sobbed when the final speaker spoke of the children that had passed. I sobbed knowing what this year will most likely bring. Each one of the children pictured is someone's baby. They are our babies... and they are dying. Truly heart wrenching. I was embarrassed to have utterly lost it in the middle of a sea of people. Katelyn and her mom hugged me and rubbed my back offering supportive words as well as a sweet student, Emily, that offered a hug to a complete stranger. I just lost it. I've tried to keep my composure all year long and have done well despite the reality of what we are going through. I just couldn't help the feelings that spilled out. It needed to get out I suppose. I think of those sweet faces in the video and of their families that are left to pick up the pieces and find the strength to go on. I pray for them to have peace and comfort and hope that is what people pray for us to receive as well.
Katelyn and her mom with Eden and Oliver
Katelyn and her mom with Eden and Oliver
Picking up all of the glow sticks afterwards. There was an eerie glow in the van on the drive home!!! They wanted to turn around and sell them for a quarter! HA!
Oliver and I having a seat after a long and emotional night
The luminaries representing kids that are 'Dancing in our Hearts' lined the sidewalks as we left.
3 comments:
Stacy,
I don't know your family but I follow your blog and I remember when you posted about this event last year. I pray for your family and I pray God will continue to stay close to your precious Oliver. Oh, how I pray for healing, as we know it is possible for Oliver to be healed with one whisper from the Lord. As a mother, my heart just aches for all you must be feeling. I wish there was something profound to say that would make a difference, but just tell Oliver that a stranger in North Carolina thinks he is a very fine, handsome and strong boy who has been blessed with a wonderful family and I think about him often. Thank you for the blog, Stacy.
Kathy
That is such an awesome thing to go to. I always tear up reading your posts about this. Glad you got to go and enjoy it together!
I loved reading this blog! It made me miss the big event so much. Alyssa and I are planning on coming to Ollie's benefit so just let us know details. See you soon :)
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