Happy New Year from HOGWARTS!

December 31, 2011 - January 1, 2012

I wasn't sure if Ollie was going to make it to the new year, but I wanted to make it special and memorable if he did, so we went all out for a Harry Potter New Year's celebration! I only had a day and a half to plan, but was lucky enough to have many decorations because of his new Harry Potter bedroom. Two of my good friends and their families came over for the festivities and helped me out so much throughout the night.

Oliver had gotten me the Unofficial Harry Potter Cookbook for Christmas and I was wanting to make some things from there, but just didn't have the time. Our house has been a constant disaster because we just haven't had time to clean. Our living room is a makeshift hospital room with all of Ollie's medical needs set up. We tried the best that we could to squeeze everyone in and make it a fun night. Ollie wasn't feeling well and stayed in his bed the whole time, but helped out in potions class and told me where to hide the snitch. He also got to have some butterbeer and was placed in Gryffindor House by the sorting hat, a gift he gave to Eden this Christmas. He was in and out of sleep, but hopefully had fun when he was awake.

***THE POTTER PARTY***

THE SORTING CEREMONY

Each child would sit on a stool and we'd place the sorting hat on their head and the hat would actually tell them, in a pre-recorded voice, what house they were in. Then they would receive a matching scarf to symbolize their house and the next child would come up. Oliver was first and I placed the hat on his head while Ed helped him lean forward. Of course he was placed in Gryffindor and so I put his scarf around him and he laid back down. Everyone clapped and cheered and he had a big smile on his face. It was so fun to see the kids reactions to what house they were placed in. Too funny! The hat would say one of these three things.

"Plenty of courage I see, not a bad mind either. There's talent, oh yes, and a thirst to prove yourself, but where to put you??? Mmmmm... difficult, very difficult... GRYFFINDOR!!!"

"I know... HUFFLEPUFF!!"

"SLYTHERIN"

Gryffindor - Oliver, Meghan, Kaden, Kael
Slytherin - Jaren, Briea, Cullan
Hufflepuff - Eden (She's Cho Chang and loved being in the same house as 'Edward Cullen')
Ravenclaw - Phineas, Ayla (ages 2 & 1)

THE FEAST
After the sorting ceremony we had a buffet set up of all sorts of finger foods. Drum sticks, a relish tray, chips and dip, little smokies, cheese and crackers and of course, Butterbeer. Amy made it with cream soda, Redi-whip, and butter flavoring. It was so good! Some of the little kids couldn't even lift up the mugs because they were so big! Ginormous... as Ollie would say. I wanted to make pumpkin juice, pumpkin pasties and rock cakes, but just didn't have the time. I'm sure we'll do it this week as I have all the ingredients.


THE TRI WIZARD TOURNAMENT
After we cleared off the food, we set up the potions class on the table where Ollie could see it as well. We had lots of old glass bottles filled with some potion ingredients. For example, white vinegar and baking soda which of course had cooler names like 'goblin pee' and 'crushed dragon bones'. The kids would take turns coming up and helping us add the ingredients. Briea, who will be 3 in March, gasped in amazement when one of the potions started bubbling and foaming up. So funny! Oliver even got to make his own potion.

*The First Task - Successfully brew your own potion. The kids were having a hay day with this! They used their wands, chopsticks, to stir their concoctions together.

*The Second Task - Create and draw your own crest. I printed off a downloadable coloring page off of the internet so they could fill it in themselves. They were excited about it and Eden ended up making two of them.

*The Third Task - Find the Golden Snitch. Since I knew Ollie wouldn't be able to participate in the hunt, I asked him where I should hide it and he pointed to a wall sconce with a candle inside of it. I perched it on the glass that covered the candle. We then told the kids that someone had stolen the golden snitch and Harry needed it for his next Quidditch match so we had to find it fast! They looked around the dining room and living room until Eden finally found it! It was fun watching the kids using their wands to look for it. Meghan had hers out and was using it to peek under Oliver's blanket trying to locate it. "Accio, snitch" didn't seem to work.

After each task I would give them Galleons, Sickles, and Knuts from Gringott's bank (chocolate gold coins) to spend later on. They were each awarded with their very own Tri Wizard Cup, a tiny gold trophy I got from the party favor section of the Dollar Tree. I wrote each name on the front along with the year. They loved it! I heard "I'm a REAL wizard now!" from the kids when they received them!


HONEYDUKES Candy Shop & ZONKOS Joke Shop

We set up a small area in the kitchen for the kids to go shopping and spend their wizards money. Dollar Tree had tons of candy and fun jokes and gag gifts to make it fun for the kids. We got large glasses, magic tricks, fake spilled ketchup and nail polish bottles, fake snakes and cockroaches and all sorts of fun tricks and gags. They could each pick out one thing they wanted from Zonkos and then off to Honeydukes where we had Bertie Botts Every Flavor Beans (Jelly Belly jelly beans), chocolate frogs and broomsticks, Licorice Wands, Cockroach Clusters (Hersey's crunch bar clusters), lemon drops, pop rocks and all sorts of other goodies to choose from. They filled their bags and their tummies!

Since Ollie couldn't make it out to the kitchen, I grabbed his bedside table and filled it up with all sorts of goodies, like the candy cart on the train that Harry Potter loves so much. I wheeled it over to him, but he still wasn't feeling well, so I just put some things in a baggy for him if he felt up to something sweet.

It was a memorable New Year's Eve for many reasons. We had fun with some good friends although it was a bittersweet night. Some of my friends where only visiting here from out of state and I knew when they said goodbye it would probably be the last time they saw Oliver. Difficult to watch and take in. It will be a fun memory of a Harry Potter New Year, but also the start of a year which will most likely bring lots of sadness and grief. So many different emotions.

After our company left, around 10 o'clock or so, I got in Ollie's bed with him and had some snuggle time. After a while he started gagging in his bed and so Ed ran and got a garbage can and I leaned him forward on the bed and he threw up. Poor kiddo. I don't know if he got the flu or if it is a symptom of the brain tumor. He said he had a headache the day before. I just don't know what to expect on any given day. He felt a little better after that and sucked on a candy cane to help settle his stomach and get the nasty taste out of his mouth. I laid there and ran my fingers through his hair for a bit while we talked. It's getting so hard to understand him now. He used a white board to write on for the first time today so it's definitely getting worse. I layed in bed and read a chapter in the fourth book, Harry Potter and The Goblet of Fire. We are nearly done with that book. I've been reading a chapter every night to the kids for the last several months. It's nice to have some relaxing time at the end of the day to unwind and have our minds wander to someplace magical. We also iChatted with Ed's brother, Jared and his family who live in California. They called us when the ball was about to drop, in our neck of the woods, and wished Oliver a Happy New Year. So... the night was filled with mixed emotions, but overall I think everyone had fun. I pray that Oliver will feel better and continue to have his sense of humor and handsome smile. We wish you all had a Happy New Year!

***for some reason blogger won't let me post pictures right now. I'll have to try again later!

December 28 - Quick Update

I haven't been online much in the last few days as we've been trying to spend as much time as we can with Oliver and our family. I just can't keep up with everything right now, so if I don't call you back or email you, I apologize, but I just can't seem to juggle everything right now.

Oliver is on oxygen all the time now. He's fallen several times today as he's tried to walk to the restroom. We have a hospital bed in the living room for him which provides an incline for him to sleep more comfortably. He likes having the Christmas tree as a night light and wants to keep it up all year. I'd like to have more room in our small living room, but I'll do whatever makes him happy. It's sad that he only had a few weeks in his Harry Potter bedroom. I should have done it sooner for him, but I can't dwell on things I can't change. I still have a few things to finish in the room. I just can't seem to find the time to get everything done.

We've been getting lots of blankets delivered to our home from so many wonderful people. There have been deliveries made to the Ronald McDonald House in Iowa City, Covenant Hospital Pediatric Ward in Waterloo, St. Vincent De Paul in Waterloo (there have been a large number of Burmese people coming to the area that have NOTHING. The nuns cried at the sight of clean blankets for them to use.) We still want to deliver some more to other hospitals around the area and Iowa City. We have been able to bless so many people because of all of you. THANK YOU.

We've also been keeping the local post office busy this Christmas with loads of boxes and letters for Oliver to open. We've all had to help out with opening the letters as there have been SO MANY! One day we came home and couldn't get to our front door because of all the boxes and letters on the front porch! It's been nice to see his face as he reads the cards. It's been a good distraction for me as well - keeping my mind on other things. So many people shared their love and support for Oliver as well as personal stories and I have found myself in tears so many times. Life is hard. One thing I've learned through this ordeal is that we have to bear one anothers burdens. We can't get through these hard times alone. So, thank you for helping support us and lift us up in your prayers. I KNOW that is why I can continue to get up each day.

Ollie wants to go to Iowa City in the next couple of days to visit some people at the hospital, make blanket deliveries and go to the mall down there. I hope he will be able to travel that long in the car. I'm hesitant about the whole thing. He also wants to go to Chuck E. Cheese to play games and I'm planning a Harry Potter themed New Year's Eve. I've learned that some things just can't wait. We have to keep moving forward even though the future is unknown.

So... I'll try to keep people posted in the moments when Ollie is asleep and I feel as if I can take some time to jot my feelings down. Please keep Tiara's family in your prayers as she passed away a few days before Christmas. Also... pray for Robbie and Brandon as they are both having difficulties as well. Pray for the families that have recently lost loved ones, especially during Christmastime when families are all together and a piece of the family is missing. My grandmother passed away on Christmas Eve day, but we aren't able to go to the funeral as we are dealing with Oliver's illness right now. Life does not slow down. I know I've said that before... but wow... it really doesn't slow down. I feel like I'm living life in fast forward, constantly moving and doing something for someone at all times of the day. I barely get to sit down for 5 minutes at a time, uninterrupted. My own physical pain (back, kidney, heel) is starting to get the better of me and slowing me down. I need to take more care of myself, but there just isn't time. At least... it doesn't feel like there is time to squeeze one more thing in. Oh well... such is life. At least there is no more pain in the next life. I certainly can't wait for that day to come. I've been more aware of my complaining about my physical pain since Ollie never complains. I'm so grateful that he isn't in any pain. That is certainly a blessing. Anyways... We are constantly grateful for your support, love and prayers. I can't seem to say THANK YOU enough. *LOVE*

Ollie

OXYGEN --- We met with the hospice nurse the other day and now Oliver is on oxygen as needed, however, Ed noticed that his normal coloring came back after he was on the oxygen for a while so he's been on it for longer periods of time now.

MOBILITY --- A sweet friend, Sharon, made some Christmas tree sugar cutout cookies and brought over all the stuff for decorating them, so that is what we as a family did tonight. Ed's brother, Danny and his wife and kids made some as well. Afterward, Ollie wanted to take some cookies over to our neighbors house. He had a hard time walking next door so Ed went and got his wheelchair to help get him the rest of the way there. It's hard to see how much mobility he's losing. I love to see my kids want to help give things to our neighbors and others. It makes me feel like I'm doing SOMETHING right. I told Eden today that Christmas is about giving. It's about doing for other people and making people feel special and loved. I sure hope my kids 'get it'.

FEAR --- Oliver has been saying that he's scared all the time now. Just out of the blue he'll say it and I know he's referring to the fact that he's scared of living forever. I know how things are scary when you don't know exactly what it will be like, so I tried to tell him that he will be alright and I also said, "Ollie, you're tired here, right? When you are in Heaven, your body will never get tired. Your body won't ever need to take a break and rest. You will be a perfected being. I don't think much of what I say helps him much because the next day he says he's scared again. Sweet boy... I just don't know what else to do for him.

HUMOR --- Through all of the frustrations with his body not working correctly and being scared and having so many questions, he STILL has his sense of humor and that great laugh and smile. It's been hard getting photos of his smiles because he'll see me taking a picture and stick out his tongue or make a goofy face. Little turd. He's so funny with some of the things he says. Oh..... I'm gonna miss that.

Ollie

Ollie's breathing has been quite labored over the past several days, which has been worrying me. The steroids he is taking are horrible for what they are doing to his body. He's ravenously hungry all the time and has gained a horrible amount of weight in such a short time. Poor kid. He still has sleeping issues, but hasn't been sleeping as much through the day as he was a few weeks ago. He's been saying a few things that just take my breath away. He told Ed and I yesterday... "I'm going to die soon aren't I?" How do you even begin to respond to that. Does HE know? Is the Spirit preparing him for it??

Last week my friend was over helping with dinner and getting Eden's birthday party off to a start and Ollie was sitting on the couch and just started crying. He said that he didn't know why he was crying and then said, "Cancer is strong." I told him that he's been so strong in battling it. He has so much on his mind and he doesn't speak much about it. He just keeps most of it in until he can't handle it and then breaks down in tears. He's been not wanting to spend the night anywhere lately either. I think it's because he's afraid to die anywhere else but home.

This whole situation makes me feel ill... absolutely ill. It has been two years of constant wonder... when is it going to happen? How is it ultimately going to take him? I know it sounds sick and hopeless to say that, but it is a sick and hopeless situation. We were given a death sentence when we heard the words 'Diffuse Intrinsic Pontine Glioma'. Do the research and you will realize that kids generally pass away within 9 - 12 months. We have had no hope. The only hope I've been holding onto is the hope that one day I will see him again. Even that faith has been shaken throughout this journey.

We've been trying to focus on daily things to do during the holidays and have had fun painting ornaments and decorating the Christmas tree, but I'm just not in the Christmas spirit this as much year. Now I understand why so many people dislike the holidays when a loved one is ill or has passed away. The holidays are supposed to be full of joy and gladness, but I'm just feeling like I'm holding on by a thread. While most people are fussing over getting their Christmas shopping done or Christmas cards sent out, I'm racking my brain with trying to figure out what more we can do for Oliver. I just feel like there is nothing more we can do. I've seen this journey played out in so many other children... too many other children.

I just feel lost... masking my pain with busywork around the house, trying to stay strong in front of the kids and everyone else. Pain and grief really do make a person a great actor. There is so much more that goes on behind the smile that I try and have plastered on my face. I can't hardly handle this pain that I am in and I don't think anyone else that I talk to can even comprehend it. I just feel like most people don't understand. They just can't understand. Life has brought on so many emotions which is utterly overwhelming, especially now. The other day I just sobbed until I was hoarse and my eyelids were swollen. Probably the worst cry that I'd had since he was diagnosed nearly two years ago. The reality of what is happening just hits you at the strangest times and spirals out of control. I just laid in my bed and screamed into my pillow. I thought my head was going to explode. Sometimes I feel like I just can't hold on any longer.

Everyone says that we are lucky we've had two years with him and although I agree that we have truly been blessed with that, it's been a nightmare living each day wondering when the tumor would start to grow again, because it always does. Will he live until his birthday? Will he live until Christmas? Do you have any idea what that is like?! That is the way that the DIPG story plays out. Everyone has their opinion or their advice to give, which I try and listen to, again with a smile on my face always trying to give everyone the benefit of the doubt because they just don't get it, when sometimes I just want to start screaming and say, "You have NO CLUE what the last two years have been like!!!" EVERY SINGLE PERSON'S JOURNEY IS DIFFERENT. I also have a mental illness that rears its ugly head on a daily basis and another child that won't eat and may need a feeding tube. Some days I just want to stay in bed all day long. "You've got to be strong for your kids." Yes... yes... I know that and when I break down sobbing??? Does that mean I'm a failure because I just couldn't keep it together in that moment? I just can't hold it all together all the time. I can't do everything that everyone else thinks that I should be doing. I can only do what I can do. I can only run as fast as I have strength and right now... I feel like I'm crawling. I haven't given up... I'm still here and haven't taken any drastic measures. I have just felt lost for two years. Up and down, up and down. My world is just spinning out of control and I just feel like I can never measure up.

TIRED * OVERWHELMED * SAD * WORRIED * SCARED * RUSHED * I just feel like life is in fast forward and we are just scrambling to get through the day and make memories. Rush, rush, rush. I want to slow down and just enjoy the time we have left with Ollie.