'Little Mr. Awesome'

The other day Ollie and I were watching a show called 'Little Miss Perfect' about little girls' beauty pageants. I know... I know... seriously nothing was on and I could not look away! It drew me in! The following conversation ensued.

"Mom, those girls are trying to look beautiful, but they are beautiful just the way they are."

"Good answer!"

When they crowned the winner and announced that they received a $1,000 check, Ollie's eyes lit up and he said, "MAN!!! Is there a 'Little Mr. Awesome' contest!?!"

Old Chicago Fundraiser in Coralville

The Old Chicago down in Coralville sent almost 100 Christmas cards to Oliver after they heard my request for cards to help make Ollie's Christmas extra special this past year. We had never met any of these kind people and yet they've done so much for Oliver. Through Woody, a parent of a child that is a cancer survivor and has gotten to know these people, they learned about Oliver and wanted to help make his Christmas one of the most memorable ones of his life! And... they did!

I received a card from the general manager down there and she asked if they could do a fundraiser for Ollie with 10% of the days totals going to Oliver for medical expenses, thanks to the new year and deductible, as well as other needs we may be facing this year. Not many people realize that we only have $2,000 of life insurance on each of our children since we were living paycheck to paycheck. No one ever thinks that it will be their child, but it was... it is our child. Coming to terms with Ollie's illness and the reality that a funeral costs from $8,000 - $10,000 and now realizing that $2,000 isn't going to cover much. It makes ya sick just thinking about a child dying. I can't count the number of times my mind wanders to such things.

So... we hope to see you down there! :O) We'll most likely be down there for dinner!

Eden and Oliver

Ollie

Ollie loves mozzarella sticks!

Say, 'cheeeeeeeesy'!

Oliver loved playing pool!

Jaren, age 3 1/2, barely seeing over the edge of the table!

Valentine's Day Candlelight Dinner

Sunday, February 20, 2011

We postponed our annual Valentine's dinner because I wasn't feeling well, so we had it the following Sunday.

Our tradition started Valentine's Day of 2004 when we lived in our apartment with Oliver, then age 2, and Eden, then age 1. Ed and I decided to make a nice dinner for our small family on the spur of the moment instead of going out. Since Oliver had many food allergies, we served him spaghetti and the rest of us had fettuccine alfredo. It has continued throughout the years with the kids getting more excited throughout the years. They even help with food preparation and table decor. We've seen a few changes over the years including having my family over to celebrate as well. This year my brother, Bryan, attended for the first time. We set the mood with candlelight, rose petals and soft music. They talk about the candlelight dinner all year long!

Pretty table

Jaren, Eden, Uncle Chad, Uncle Bryan, Grandma, Oliver

*The Menu*

Fettuccine Alfredo
Tossed Salad
Cheesy Garlic Bread
Sparkling Cider
Chocolate Covered Strawberries
Molten Lava Cakes

Jaren and Eden

Jaren, Eden and Chad

"CHEERS!"

Jaren and Eden... looking like she's singing some drunken ditty! We managed to get through the dinner without sacrificing any wine glasses!

Me, Ed and Finny

Oliver telling a story

Jaren drinking his cider with a spoon... hmmm...

Finny recently learned how to drink with a straw

YUM!

Love this picture! They were trying a 'Lady and the Tramp' scene.

Lunch with the firefighters & an uncertain future

Thursday, February 17, 2011

Today Oliver and I went to the fire house on Ansborough and University Avenues for a delicious spaghetti lunch. There were about 5 guys working that shift and three were gone on a run when we arrived. Ben took us around on a tour of the small fire house while Mike finished up cooking the spaghetti and cheesy garlic bread, which was so good! Mike and Ben were both working the night they surprised Oliver with his Christmas surprise. Mike had said that they wanted Oliver to come for spaghetti since they knew that was his favorite meal! They reminisced about that night that he drove around town and laughed because Oliver was saying that he sounded the siren a little too long because he slipped and was hanging onto the cord that sounded it. It was fun chatting with them. We had such a fun time! It meant a lot to me that they would go the extra mile and do this for Oliver. They really didn't have to, but they did.

Ollie

Inside the fire truck

Mike showing Oliver the truck

Oliver spraying the extinguisher full of water. It was way better than a super soaker!

Oliver, "Mr. Cool"! We were laughing at how he crossed his arms for the pose. Also, notice his boots are firemen boots!

Ben, Ollie "The Axe Man", Mike

While Mike was showing Oliver around, I had the opportunity to ask Ben a difficult question that had been going through my mind about who to call if Ollie passes away at home. I didn't know if you called 9-1-1, the hospital, the funeral home or if hospice took care of it. He told me to call 9-1-1 and they would take care of it unless we had a funeral home in mind and they may come to the house. I've been thinking about a lot of things and wanting to be as prepared as I can, but knowing that there just is no way to prepare for something like this. We've talked about wanting him to be comfortable and how being at home would probably be the best place for him at the end. Getting to know others who have traveled a similar road and knowing that I'm not alone in the thoughts that enter my mind eases me a lot. I hate having to deal with this. I still can't wrap my mind around it. I shouldn't have to think about who to call when he dies or if they will take him out in a body bag. Do they have children's body bags? Planning for a funeral, seeing small coffins, where to have his visitation. It absolutely makes me sick. I don't want to be in this place. Why is this happening?? I know what I believe, but the WHYS still creep in. Why Oliver? Why DIPG? Why can't it be a cancer that has a better survival rate? It's hard to think about. It's hard not to be jealous of people who's children are survivors. It's hard to admit that I get jealous, because you want to celebrate with them, but it's hard knowing that there are only a few handfuls of survivors of DIPG. If even that many. A long term survivor is two years or more. WOW... REALLY?!

It's difficult hearing people say that their children 'beat cancer' or other things like that as if they had a choice in the matter or that they are 'the strong ones' and tried harder or something. The children that have passed fought just as hard and were just as deserving at living life than the ones that made it through their journey. I'm not saying that their journeys are any less difficult... not by any stretch of the imagination. I know that kids have other side effects from the cancer and treatments that affect them the rest of their lives. I know that there are many pediatric cancers that have taken children's lives. In the last 30 years nothing new has been done in the field of DIPG... that is highly discouraging. I don't know... it's just something I've been thinking about and struggling with lately.

I haven't lost hope for a miracle for Oliver... although some days I feel more hopeful than others. This is part of my grieving process and preparation for the uncertain future. I think when is it going to happen? Will it be around his birthday... or sooner? Will it be in the winter? How do they dig a hole in the frozen ground? How long will it be from the time progression happens until the time he takes his last breath? Will he be in pain? How will the other kids take it? Will it be too difficult to stay in the house that he passed in? It's been so difficult to plan anything because we just don't know what's going to be happening. Last year, planning for the holidays was difficult. Do we go anywhere? Is he going to be here? Do we buy him presents or wait? It's been such a roller coaster ride and sometimes I feel as if I'm one of the only ones riding it. You really find out who your true friends are through something like this. I've experienced so many emotions throughout the past year and have had difficulty forgetting about the insensitive and heartless things that people have said and done after Oliver was diagnosed. I know that I need to focus on the wonderful things that people have done for Oliver and our family. This lunch with the firemen is one of those things and I am grateful for their interest in helping to make Oliver happy. It makes me so emotional just thinking about it. I don't think they realize how much it means. If they read this... then hopefully they can feel and know how grateful we are. It is a journey. Day to day, step by step, breath by breath. Trying to get through the day without dwelling on certain thoughts or the 'what if's' has been difficult, but it's all part of the journey.

So... THANK YOU to the firemen for a delicious meal and a sweet memory!

"Will YOU be my Valentine?!"

*Valentine's Fun 2011*

Eden and Jaren making some Valentine's to send to some other children that are battling cancer right now. We made several valentine's over several days, so Oliver helped as well. He was at Grandma's this particular day.

WE FEEL THE LOVE!!!

I was shocked to see that he received so many Valentine's cards and then realized that people still had our address from the newspaper. It was a sweet surprise to see all the mail still coming in. I've been stressing out a lot about keeping up with my thank you cards and know that people don't do it in order to get a card, but I'm old school and really want people to know how grateful we are. So... that being said... with the volume of mail and packages coming in I know that there will be some thank yous that will be missed and I apologize for that. I'm trying to keep up with them as well as attending to my needs and the needs of my family! PLEASE know that we love you and appreciate, from the bottom of our hearts, all of the love and time that goes into sending Oliver messages of love and prayers. I personally will NEVER forget the kindness of so many strangers and loving friends.

Oliver with some of his 'love notes'! ;o)

Oliver opening some of his cards and packages!

From Dominic's Granny on the Hill!

Largest card goes to... Girl Scout troop 6081!!! Thanks girls!

A kind woman from Cedar Valley Medical Specialists stopped by with two bags of goodies and cards for Oliver. She said that 8 years ago, she lost her brother on Valentine's Day and since then wanted to do something for others on that day. Very sweet! Jaren and Phineas LOVED the dancing and singing dog! THANK YOU!

VIDEO: Phineas dancing with the puppy

Ed also brought home Valentine's packages from his old boss, Marla, who always gives the kids sweet Valentine's! They LOVED them, especially the 'light sticks aka: light sabers' and Phineas LOVED the dancing and singing lion! THANK YOU for ALL you continue to do for Oliver and our family!

VALENTINE'S PARTY @ SCHOOL
I didn't even get a picture of Oliver at his Valentine's Day party at school. I always try to get him there for assemblies, parties and other special days. Since his classroom is three floors up, it's difficult for him to get up the stairs without slowing down and starting to have some minor breathing problems. Heck, I can barely get up the stinkin' stairs, but of course it's for different reasons! It's to go and see all the kids get so excited to see him there. I know it makes him feel good. Last year I had gotten some buckets with hearts on them and added his name to each of them to use for mailboxes in each of the 3rd grade classrooms. I had found them downstairs in the basement and his teacher had passed them out to each of the 4th grade classrooms so that the kids can put notes and pictures, in this case, valentine's in the mailbox for Oliver. It's so cute to see that a little boy, Theo, always gets Oliver a nice Valentine's gift and candies. He gave him a stuffed animal last year at Valentine's as well. The kids are all so sweet and loving toward him. This year he decorated a shoebox, with a drawing of Spongebob of course, for his Valentine box. He had fun celebrating with his classmates.

Oliver also received several cards from people we met at Dance Marathon. These are a few homemade ones from a sweet gal I met right at the end! We could be crafty friends, I think! :O)

VALENTINE'S DAY SURPRISE from LOU HENRY and HOOVER MIDDLE SCHOOL

My mom is a special needs teacher at Lou Henry Elementary and is good friends with another special needs teacher, Mrs. Witte and her associate Mrs. Luck. They surprised Oliver by bringing a few students over and giving him a tote FULL of homemade valentine's from several students from Lou Henry and Hoover Middle School. My mom used to teach there for many years before her move back to the younger kids. THANK YOU!!!

Oliver

A tote full of love!

Top: Mrs. Witte, Mrs. Luck, Oliver and several of the students.
Bottom: My mom, Oliver and the kids, Mrs. Luck

Again, thank you so much for continuing to show your love for Oliver throughout the year!