Tuesday, February 21, 2012

February -- Valentine's Day & Ollie's peaceful transition


These two weeks have been the most trying days of my entire life. Two weeks ago I was in a place I never thought I'd be. Ollie had been struggling to speak and it was harder and harder to understand him. It was a difficult time for me as my medications were being changed and I was teetering on the edge of sanity I think because of it. It's been hard the last couple of months as it seems that everyone seems to just want Daddy. Due to my whacked out mental illness I, of course, took it personally and have been struggling with the fact that no one wants mom for anything. I know that Ed is the only one that could lift him and help in many more physical ways than I could. He'd gained so much weight, lost his the ability to move and I deal with back issues so of course he needs Ed. I had been struggling before, but when Oliver struggled to get out the words, "I love you, Dad" and then said nothing to me... I just lost it and went into a tailspin of sorts. I think only people who have been suicidal can't understand the feeling of pain and anguish that consumes your entire being. I sat and waited for him to say something to me... but nothing. And those were the last words I ever heard him speak. I was sad, I was angry. WHY??? Why does everyone want Dad? I just thought... 'fine... everyone can just have Dad' and thought 'screw it'. No one wants me here anyways so just screw it. And I snapped. I did what I never thought I could ever do. Never in my life did I ever think it would be possible for me to actually try and do it, but I did. I became 'that person'. Oh great... I'm now one of 'thooooooose people' whose lives are completely out of control and actually try to do themselves in. I will forever have that label attached to me. So many thoughts swirled through my head and I wanted to just run away so no one would find me and be able to stop me, but then I think sanity finally found its' way back into my brain and I was scared. I was scared that they wouldn't be able to save me because I took so many pills. I was scared that it would hurt to pump my stomach. I was scared to have to face my reality. I was scared, I was anguished, I was angry, I was mad at myself for being so weak, I was embarrassed at becoming what I was. I was consumed by grief. My son is dying. How am I going to live my life without him? How am I going to be able to go on every day without that smiling boy next to me, how will I eat everyday at the table with an empty seat across from me? (I understand that my kids and husband need me... believe me... I do, so please don't feel like you need to counsel me on that. I'm in a different place now.)

The more I thought about it, and I had lots of time to think for the following few days, the more I realized that, "My kids may act like they don't WANT me, but they NEED me." I really tried to delve down deep inside and get at why they just gravitate toward dad. Well... I'm the scary mom with the mental illness that is like Jekell and Hyde some days and daddy is the easy going one that lets everything just roll off of his back. AWESOME. I may have given him memories of parties and trips, but dad can give him his knowledge of the gospel and the plan of salvation. I can't. Again... AWESOME. Wow... completely feeling like a ball of crap right about now. I can give him fun and fluff, but Ed can give him what he truly needs. A situation like this really makes you take a hard look at yourself and life. I really need to do more than I have been doing to get my life back in some sort of order. I just feel so lost and out of control. So I was still in-patient at the hospital and Ed said Oliver wasn't doing well, so I talked with my doctor the next day and let me leave early because he was actually being transported to our local Hospice Home. I don't think I would have ever forgiven myself had he passed away when I was in the hospital myself although I know that is where I needed to be at the time. The next few days were difficult seeing him decline more and more each day. He hadn't eaten or spoken in several days and his breathing had been getting more and more labored.

FEBRUARY 14, 2012 - Our final Valentine's Dinner with everyone...

Eden and Ed

Oliver and his favorite -- Chocolate covered strawberries!

Sweet boy, asleep.

Thank you to all my friends that helped with the Valentine's decorations and food. We couldn't have done it without your help!

Someone else that was visiting the Hospice House put this inside the door, as we were all sleeping at the time. Very sweet of her.

Sweet boy. Oh... my heart. He loved Dance Marathon that's for sure.

Ed giving Ollie some sparkling cider from dinner since he hadn't eaten food for several days.

Trying to keep him as comfortable as we could.

Aubrey getting more cider.

Finny just blends right in with the red balloons!

Mmmmm... dessert!

Grandma (my mom) -- the Valentine Bandit.

My brother, Chad and my niece, Addison.

Aunt Emily, Ollie, Grandma, Brother Finny

Eden and cousins Natalie and Aubrey

My sweets...

We still celebrated Valentine's day with our traditional family Valentine's dinner. It was hard eating in front of him. I did give him some sparkling cider through a straw though. Each day, he lost something else. He couldn't sip through a straw anymore and so he choked if he got too much in when I actually put it into his mouth. His breathing sounded so crackly and raspy. It sounded like someone was in an old rocking chair rocking back and forth very quickly. Tensions were high and I will spare details of many of my frustrations at the situation I had currently found myself in. I needed to have alone time with him and Ed and there were just so many people in the room at the same time and I felt so frustrated. We finally got that time to ourselves. I read to him, we sang to him (Nearer My God to Thee, A Poor Wayfaring Man of Grief, Be Still My Soul, Come Come Ye Saints, etc.), I did a Mary Kay 'Satin Hands' treatment on his hands and massaged his legs and feet. I laid on the bed next to him and just ran my fingers through his hair and kissed his cheeks as much as I could.

Then I was in so much pain I was on the floor like that. My mom took me to the ER and they found that I had three kidney stones. This ended up hurting until about an hour before Oliver passed away a day and a half later. Plus, the day we got to the hospice house, I had the stomach flu and was laying on the cold bathroom floor there until I got up enough strength to go home, take some NyQuil and sleep for several hours. Aunt Flo paid a visit, I was having headaches from medication changes and then a horrible cold that I still have a week later. All this is going on with my own physical body and I'm like... "WHY NOW?!" I can't miss any more time with him. I can't sleep right now... I have to be well for Oliver. I was just floored as to all the pain I was in, but then I tried to think of Oliver and how he never complains... so I just had to suck it up. Oh well... do what you have to do.

FEBRUARY 15, 2012 - So many friends were in and out visiting the last few days. Amy, Meghan, Andrea, Mrs. Klein (Oliver's Kindergarten teacher), Woody, Katelyn, Bishop and Susie, and so many family members and other friends of ours and my mom's came. Lindsay and Krista and their kids came in with lots of balloons and valentines from all the kids in Primary at church. It was hard to see Sydney and Haylie crying as they saw Ollie. We've known them for so long and Ollie said that Sydney was one of 'his best girls'. They talked to him, although he couldn't speak, he gave a half smile and they both gave him a kiss on the cheek. Two of Oliver's best friends visited him on the night before he passed away. Nick came to read him some of the Valentine's that his class at school had sent and would get choked up reading some of them. What a sweet kid. I just love his whole family. Eden is best friends with his younger sister, McKenzie, who I used to babysit when her and Eden were in Preschool together. Then his good friend Takoda came with his Uncle Devon, who is actually their age, and his mom and dad. They are some good people, too. Such sweet, sweet people we have been blessed to meet because of our children. Takoda read 'Charlie's Superhero Underpants' and then talked to him and sat while Oliver laid next to him. He did manage to crack a few small half smiles there at the end. He'd been throwing up several times as well and so things were just getting harder and harder for him to do. They stayed for a long time and we had a great time talking with them. Takoda had given him a hug and kissed him on the cheek. Seriously... a sweet and compassionate young man.

Devon, Takoda and Ollie

Cassie (Takoda's mom), Takoda and Ollie. This is the last photo of Ollie that I have. Sweet, sweet boy.

Later, Katelyn, our University of Iowa Dance Marathon family representative, who met Oliver last year and just adores him stopped by at like 11 pm or so and chatted for a bit and then headed home. I was grateful that she had stopped by tonight because she had been planning on stopping by on Thursday night. After most people had left, my brother, Chad, Ed's brother, Randy, Ed and I and Oliver were the last ones that remained in the room. I kept having a song by the Dixie Chicks in my head called "Godspeed". "Godspeed, little man... sweet dreams, little man. Oh my love will fly to you each night on angel's wings. Godspeed. Sweet dreams."

FEBRUARY 16, 2012 - He was only there for four days. We did a lot of swabbing the saliva out of his mouth and a morphine drip for any pain he may have had. It was easier to manage before the pain started. He never complained, ever. Unreal. His breathing got worse and worse and Ed used the suctioning machine and got out a lot of foamy white stuff and there was some blood in the tube. I knew it wouldn't be much longer. I didn't think he would make it through the day and I was right. Everyone else was sleeping, but I stayed up with Oliver as he slept, his breathing still really crackly and loud. I sat next to him in a chair and suddenly realized that I could only hear the whirring of the fan and the droning of the oxygen tank and not his breathing. Before I looked up at his face... I just knew. I knew he was gone. I looked up and instantly knew and I looked at the clock... it was 4:15 am. I woke up Ed and said, "I think he's gone." The nurses came in and he let out a breath, but we knew he was already gone. It looked like he was sleeping. I KNOW that he left the way he wanted to because it was like he quietly 'snuck out the back door', just like Ed said. He wouldn't have wanted us to be crying or worried, so he peacefully left while we were all unaware. What a sweet, sweet boy. Always caring for everyone else.

Randy went to pick up Eden and I think Ed's dad brought Finny and Jaren... unless Jaren stayed with us that night... I can't even remember. Eden was scared to come into the room because she didn't want to see him laying there, but I said he just looked like he was sleeping and he was at peace. I was shocked because after she came in she kept touching him and kissing him and touching his hair. The boys didn't really understand it, of course, but I wanted them there anyways. We stayed in there with him for about an hour and a half later and then called the funeral home to come and pick him up. I kissed him and ran my finger along the curve of his nose. I couldn't believe the day had finally come to say goodbye to him. We followed him outside on the gurney and went to our car, I couldn't bear to see his face covered up in a body bag. We drove home and started the funeral planning. I still hadn't really cried much, later realizing that it is because of the SHOCK stage of grief. A numbness had overcome me, a small gift from God, to be able to function while planning the funeral and signing papers and all the stuff that comes after a death. We went to the funeral home and got things squared away and then to the cemetery to pick out a plot. Lot #33... ironically the age of Ed and I at Ollie's passing. We have plots next to him as well. So much of the next few days are a blur...

Saturday, February 18, 2012

"Oliver Palmer passes away" - KWWL News

A community pays tribute to 10-year-old Oliver Palmer" - KWWL News

"Waterloo boy, Oliver Palmer, loses battle with cancer" - Waterloo Cedar Falls Courier (newspaper)

Ollie is home...

Ollie passed away peacefully on Thursday, February 16 at 4:15 am.

Visitation for Oliver is set for Sunday evening from 4:00 to 8:00 at Hagarty Waychoff Grarup Funeral Service on South Street in Waterloo. The funeral is set for Monday at 11:00 AM at the family's church -- the Church of Jesus Christ of Latter-Day Saints in Cedar Falls.

Monday, February 13, 2012

Rough Week

Oliver is currently at the hospice home here which is a few blocks away from our house. He no longer talks or moves on his own. We are currently making funeral plans as he may only have days to live. He hasn't eaten for several days and doesn't drink much. He sleeps nearly all day, maybe 20 hours of the day. I'll try to post updates when things change. Thanks.

Friday, February 10, 2012

Today, you were far away...

Stacy has told me I should post to this blog and so I here "entrude". Today has been a day where "tough" is abject nugatority (yeah, I probably made that word up). I have often thought upon the irony of my name: E-D. The following verse has been running through my mind the last few hours:

"Tonight you just close your eyes
and I just watch you
slip away

How close am I to losing you?"

I don't mean this to be a melodramatic post...I need it to be a post of supreme gratitude. Please be aware that I believe in the axiom that God does notice us...that He does watch over us, and that it is usually through another person that he meets those needs: therefore it is vital that we serve each other. There has been an outpouring of this facticity so pervasive in my life...especially in the last two years that I am literally overwhelmed by it. There is no possible way I could thank each and everyone of you for all that you do for my family; and with that realization I have to trust the God who knows what the left hand doeth (even if the right hand sits in the dark) to reward openly, knowing it will be far better then anything I could do. Please be aware of my gratitude and my love for you all. I am contended that charity suffereth long and seeketh not her own...

Thursday, February 9, 2012

Oliver Update

He sees me pull out the camera and hides under the blanket!

Then this is the look I get! Sticking his tongue out at me!

Sweet boy

Papa's kisses are the BEST!

This is the look I get from Ollie when he thinks I've said or done something idiotic. I see it several times a day...

Finny sneaking in a hug.

I 'must-ache' you a question...

Hugs and loves from Finny boy

Fancy chocolate covered strawberries... um... yum. Also... notice his shirt my mom got him the other day. Ollie has always reminded me of Yoda -- short and full of wisdom.

Addison and Jaren

Jaren giving some crazy loves, Oliver and Uncle Chad

Natalie picking Uncle Ed's boogeys.

He's learning how to use the potty!

We received a package of ice cream from Cincinnati, OH and I KNEW it was Elena's ice cream! Elena was a sweet little girl that passed away from DIPG, the same brain tumor as Oliver. Her parents founded a pediatric brain tumor foundation called 'The Cure Starts Now' and this is her special ice cream!

You can tell by the look on Finny's face that he loves to wear girlie shoes!

On Sunday evening Oliver started having horrible stomach pains again and this time Ed and I figured it was his bowels again... the 'bowels of hell'. I can't hardly stand seeing him tilting his head back, closing his eyes and yelping out in pain. We didn't have anything for him, but Tylenol so we gave him that to try and help with pain and called Hospice to see if they could help us get something to help get him going, but they said they couldn't. His pain stopped for a while, but started again and so we ended up taking him to the ER because we just didn't know what else to do. We didn't have anything other than the stool softener we'd been giving him. They did some blood work and took an x-ray and confirmed that he was full of crap again. Poor kid. Last time they had given us some stuff for him to drink that really cleaned him out, but unfortunately they didn't give us any this time. They gave him a soap enema and that helped him out a little bit 'We need a cleanup in aisle (room) 6!" They told us to try and give him an enema and call our doctor in the morning who ended up prescribing him some Miralax. It was after midnight when we left the ER. We stopped by Walgreens and I ran in to pick up some apple juice and enemas while Ed and Ollie stayed in the van. Ollie was so tired after dealing with the pain. As I walked out I heard a noise that should not be coming from our parked van. I could tell that Ed had been having a hard time trying to start the van. AWESOME. So it's after midnight and we are stuck at Walgreens. Thank goodness Ed's brother and his family are visiting from California so he came to pick us up and take us back home.

The next day Ollie had a little pain and no bowel movements even after an enema. He hadn't eaten anything in a few days, but had some apple juice with his Miralax mixed in. Poor kid. He told Ed that he was ready to die. He's so sick of his body not working. He's been telling us many times that he wants a new body. I told him I would like a new body as well. So, after a few days he had a small bowel movement and has finally started eating a little bit again. He still chokes on everything, even his own saliva, and coughs for a bit until he can get it under control.

- Choking on food, liquid, saliva
- Makes weird noises in his throat
- On oxygen most of the time
- Can no longer walk
- Can no longer hold himself up when standing or sitting (he needs to be propped up with pillows)
- We are feeding him now.
- Wearing depends, using a urinal
- Sleeps more
- Can't understand much of what he says
- Can't type things out on the iPad because his fingers don't work anymore.
- Having headaches

Today (Wednesday) Ed asked him if he had a headache and he said no. Then Ed asked him if he was lying and he said yes. I know he doesn't want to worry us. Today it's been REALLY difficult to understand him, but I understood when he told me that he wants to die. He's trapped in a useless body. A body that is slowly falling apart. His ability to communicate is horribly diminished and he knows it. He is completely aware of everything that is going on. We tell him that he will not have to worry about his body in the next life, that everything will be restored. I just can't imagine what goes through his mind... he's 10 years old and knows WAY too much... is going through WAY too much. He is an UNBELIEVABLY amazing kid. Seriously.

When we aren't going to the ER or sitting in the Walgreens parking lot, we've been watching a lot of movies when he's awake. It's nice to lay in the bed along side of him and snuggle with him. He usually asks for Ed or I to come and sit or lay by him. I usually just lay my head on his shoulder and rub his arm, hold his hand and run my fingers through his hair. He's such a sweet boy.

His cousins have been visiting and they've been reading to Oliver and playing some games together. It has been really nice to have them here. Eden hasn't been going to school the past couple of days because she just needs to be home spending time here with us and Oliver. There are so many signs that point to the end of life being near that we've kept her home. I need to see what she's learning in school so she can keep up with her schoolwork at least. She's such a good student so I have no fears of her falling behind. Her counselor had talked with my mom and said that she's been a little more quiet than usual. She knows that Ollie doesn't have much longer. I can't imagine how she feels. They've been together for so long... her and Ollie are only 17 months apart and have played together forever it seems. It's been good to have her cousins that are her age here to play with her and have a bit of fun.

We've had several visitors in and out lately which has been nice. Lots of family have been in and out. Ed's coworker friend brought cookies by today and a sweet woman I met online brought by an awesome Harry Potter cake that her and her sister made. It was AMAZING!

Heather and her kids brought over the cake her and her sister made. Isn't it awesome?!


Our Dance Marathon Family Rep came by with some Valentine goodies for the kids and stayed for some Butterbeer and Bertie Botts Every Flavor Beans. I had made some Pumpkin Pasties a few days ago, which are like small pumpkin pies that look like empanadas, but Ollie didn't care too much for those. She also played play dough with lots of the younger kids. We had fun visiting for an hour or so.

Giving Ollie his valentine.

Jaren modeling his sweet new hat Katelyn brought him.

I love seeing Phineas lay with Oliver and try and give him hugs and help him with everything. It's so stinking cute. There is so much love there.

I've been going through lots of old photos and there are so many darling pictures of Oliver holding babies -- mainly Finn and Jaren when they were younger as well as many friend's babies and his younger cousins. He's always loved babies which is just another loving trait of his that shines through.

During some quiet times I will read Harry Potter to him. We are in book 5 now and have quite a ways to go yet. I've also been reading him the Valentine's that people have sent him as well... to the 'Lovable Oliver Palmer'. He's been sleeping a lot, but we try and do as much as we can with him when he's awake, whether watching movies together or playing cards or board games... things he can still do while sitting propped up in his bed. He totally kicked mine and Ed's butts playing the Harry Potter Scene It board game and loves playing Scrabble on the iPad with Uncle Bryan. He always beats Grandma when they play each other as well. He's always been a great speller.

He also likes playing Family Feud on the computer as well. Ed and Uncle Jared have been asking him the questions and everyone shouts out answers. He's also really good at Wheel of Fortune. Seriously... if I were ever on a game show, I'd bring him! :O) Today the girls found a scary story book that had stories like 'The Hook' on the car door handle and so they sat around Ollie and Eden read aloud to him. They were so sweet with him. Ed has been reading several articles and the scriptures with him and talking about what to expect in the next life. I hope that has helped Oliver feel more at ease. He'll start to say things and then whimper and his lips start quivering and he'll start to cry and talk about death. Although I don't understand this trial I do feel like I will see him again and I hope that he knows that. I just don't want him to be scared or in pain in any way. I can't bear to see it. So we just keep plugging away and make memories. What else can you do at this point?