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

FEBRUARY 2012

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...

"It's my blog, I can vent if I want to..."

Sick to my stomach just pissed off about life. So many things running through my head right now. One thing that has bugged me since the day Oliver was diagnosed is that MOST (not all) of the people I know personally have failed to provide support I have needed and that the kindest, most encouraging words have come from strangers that I've met online and who have followed this blog. I have come to the realization... well... many times I've noticed that people on facebook commonly comment on stupid, random crap people put on their page and that there are very few people that I know personally that provide any uplifting support over the last 2 years of this journey. Usually there are words from complete strangers whose paths I just happened to come across. What does that say about the people that I know? I really wonder about that. I want to tell them that if you haven't been here through the last two years not to bother to come to Oliver's funeral when the time comes. Don't act like you care about him or the rest of our family when he's gone. I just don't understand people. I really don't. I don't even want to have a funeral because I don't want to be angry. I'm dealing with so many other emotions right now and I'm sure they will just get worse when that time comes that I don't want to see people that I would have thought would have been more of a support through this journey and want to drop kick them during the service. I'm sure I'll have to have my fake smile plastered to my face... the same smile I have to have on when someone says something that their brain should have filtered out... you know... something hurtful or ignorant with regards to my dying child or how I 'should' be doing things. This feeling has gnawed at me throughout the last two years as people have continually lacked in support, encouragement and understanding. I KNOW that I 'should' and 'need to' focus on the positive people, but I just can't help the feelings that I've felt on and off for the last two years. Obviously... there have been some WONDERFUL people that have shown their love for us... usually people I don't know well or complete strangers. I know there are friends and family that live farther away that would help support us and provide the much need relief from this EXHAUSTING journey. These are the people that make me want to be better. I guess I could say to some extent that the people that have failed to be here have made me want to be better as well... to not be idle in my service to others or just being there when times are too much to bear. Aren't we supposed to bear one another's burdens??? To comfort those that stand in need of comfort??? If there has ever been a time in MY LIFE when I NEED comfort... it is during this journey and I feel like I have slipped through the cracks to my own personal hell with no one in sight to offer a helping hand. I get that people can't read minds and so I've had to speak up, but some things you shouldn't have to ask for. It's like begging... which I'm not a fan of. Granted... the past month or so when Ollie's health has really started to decline, a few more people have stepped up to help in many ways, providing us more time to spend with Ollie, however even then people seem to 'forget' about us. I know people aren't perfect and I know I need to give people the benefit of the doubt, but when things happen over and over again it's hard not to feel like you are not cared for enough to be remembered. I know I 'need to' be more grateful, but at this moment... it's my blog, I can vent if I want to. You really don't have to keep reading.

Another thing that has been gnawing at me for a long time that I feel I need to address here for other people that may feel the same way is that sometimes life just sucks. Period. I see all the wonderfully and disgustingly optimistic quotes on facebook about admiring the people that have every reason to break down but still smile or still hold it all together or some crap like that and I just think... I think someone incredibly ignorant came up with that. Someone completely oblivious to the pain and emotional turmoil that comes with watching your child slowly dying. Hearing your child tell you that they 'just want to die', that they 'want a new body'. I mean... really? Is their world unicorns and lollipops all the damn time?! Because really... when people post those redonkulous quotes on fb I just want to punch them in the face because underneath the wording of the quote it makes the people that do have breakdowns... justifiable breakdowns... feel like a worthless, weak piece of garbage because they 'should be strong enough to hold it together'. Yeah... really?! Does anyone else hate those quotes as much as I do? Am I just reading into it too much? It just really gets under my skin. This journey is a challenge, emotionally, physically, mentally, spiritually, financially. Take a mental illness where you want to hurt yourself on a regular basis and always feel like a failure at whatever you do, add a child dying from a cancer the medical field doesn't know much about, other health difficulties of other children, add a crap load of people that act like they don't care about you and top it off with a few sprinkles of crappy quotes that make you feel even worse about yourself and there you have it -- a sh*t sundae with a whole lot of toppings I could really do without at this point in time. *I could just scream* Anyways... life is hard... I'm struggling to see the silver lining... I'm just struggling. I'm in so much emotional pain that sometimes I just can't bear it. I've been having panic attacks lately, at least I think they are panic attacks. It just seems to come out of no where and blindside me and my chest fills up, I feel like I can't catch my breath, crying out of control, shaking and feeling like I'm going to pass out. I've been dealing with a change in medications lately, trying to take care of a constant physical pain throughout my body thus adding and subtracting medications here and there and feeling horrible withdrawals and noticeably not being able to keep my head on straight. Sunday was one of the worst 'mental illness days' I've had in my life. I won't go into detail, but I'm sure I probably should have committed myself to the mental ward at the hospital. That is another thing I wanted to address for anyone listening... the topic of suicide. I am certainly not saying go and do it. Nothing could be further from the truth. However it is a struggle to choose to stay here and go through all that life is throwing my way. When I think of how many times I've actually thought of different ways to end my life it scares me. On my good days it's frustrating and maddening to accept that I have those thoughts. You truly feel weak and insignificant. You feel like you can't physically or emotionally handle the trials of life. The 'shoulds' float through your mind and you take a mental inventory of all the things that you are failing to do... failing to believe. You see yourself as a burden to everyone around you and truly and honestly believe that they would be better off if you weren't there. You try and see what their lives would be like with you there and then with you gone and you compare the two and think... which one is worse for them?? It feels like a selfless process. You want those you love to be free from the pain that you feel you cause them. Some people want to be free from chronic physical pain and so many other things. These are REAL feelings, although probably incredibly distorted, they are real. These thoughts and feelings flood your mind and take over. I guess I can only speak for myself. When I think back to conversations I've had with people about suicide and the off handed remarks about how selfish that person was to do such a thing, I just think how ignorant people are. I think about the person that took their life and what they must have been feeling. How life's trials were breaking their spirit, ripping their world apart. So many people just think you can smile your way out of depression and mental illness. 'Just smile and count your blessings... and you will be just fine.' Ummmmmmmmm....... nope. If it were only so easy. We would LOVE to break free of our illness. It's a daily struggle with our own minds. We never get away from ourselves. It would be lovely not to have to deal with our distorted thoughts and emotions, but somehow life just isn't that cut and dry. It is not simple. It is a struggle. A horrible struggle to try and manage and overcome the thoughts that loom in our minds always threatening to push us over the edge. It sucks. It just sucks. Every single day I'm still here is a battle won. Nothing anyone on the outside looking in would ever realize or congratulate you for. It's a quiet and lonely fight that you just have to congratulate yourself for overcoming that day.

I sit here thinking to myself... "Do I reread this blog post and should I take things out that may offend people?" I think not. It's my journal of my life's dealings and how I'm getting through it. I should hope that someone may find inspiration in understanding that we are all human and are still good people even if we experience breakdowns and setbacks. I for one feel like I'm not alone in the world when I read about someone that has had breakdowns and are still moving forward. I don't connect with those that always wear a smile for everyone else to see only to try and project a perfect life into the world. We aren't perfect... we aren't expected to be perfect. I hope that this is just a dip in my journey. Maybe tomorrow will be brighter... more optimistic. I'm only human... what else do you expect from me? I need to keep reminding myself every day that I'm only human...

No more traveling...

Saturday, January 28, 2012

Well... tonight was a difficult night. After nearly two weeks of not being able to go outside with Ollie, we borrowed a van with a wheelchair lift to go out and get some fresh air and a change of scenery for Oliver. After 10 minutes in his chair he wanted to lay down. We were going to take him to see a movie and go out to eat, but opted for dinner only and even that was difficult. It is hard for him to keep his head up without pillows now. He says that his back hurts more when he's trying to sit up and that his butt gets sore when he's in a certain position for a while. Ed has also been feeding Oliver more and more often. He just can't get his hands to grip the way he used to. Poor little man.

We had been hoping to go to Dance Marathon this year, which is an annual fundraising event for the Children's hospital down in Iowa City and a 24 hour event for the kids and families to honor those kids fighting and remember those that have passed away. We ALL look forward to this fun filled and emotional event each year. This would have been our third year attending. It is so close, but I just don't think Ollie will be able to make it. Eden is really bummed out, but understands why we aren't going to be able to go. We'll be there in spirit.

It's harder to understand him when he tries to tell us something so he doesn't talk as much. He had lots of visitors today, Grandma Young, Uncle Bryan, Uncle Chad, Grandma and Grandpa Palmer, Grandma and Grandpa Boardsen and his friend Takota came over to play for a few hours. They played video games and used the remote control helicopter that my mom, Bry and Chad brought over. The kids... well... the boys LOVE to play with it, but the charge in it doesn't last very long. Finny likes to have the helicopter take off from on the top of his head... weirdo. :O)

We got a fingerprint art book and Eden has been going to town coming up with stories and fingerprint pictures galore! It's so fun to see the kids love arts and crafts as much as I do. I need to get some other memory making things ready for the kids to do. My mom also bought her a book where she can design clothes for paper dolls which she loves. She's a girl after my own creative heart!

Jaren has been playing with more action figures, mainly superheroes... Spider-man and Captain America are his favorites and watching plenty of Spongebob on the portable DVD player in his bedroom. We've also been playing Spongebob Yahtzee, a game he got for Christmas. He still has his eating and breathing issues that we need to address soon. He has an auto-immune disease, Eosinophilic Esophagitis which has no cure. He hardly eats a thing and never has. Ever since he was a baby, he would choke, gag and eventually throw everything he ate up. He pretty much subsists on soy baby formula, crackers, cereal and baby food sweet potatoes and bananas. He may need to be placed on a feeding tube until he can eat 25 different foods. But, of course we have to wait until things calm down with Oliver's medical needs. Right now we try to get him to at least lick different things at dinner time, but even that is nearly impossible. *SIGH* Parenting is hard.

Finny has been playing a lot with Jaren and still the busy body around the house. He and Jaren play upstairs together more and he has started to play a bit by himself as well. Luckily he still has his one nap a day so he's not a complete beast for us. He is definitely into more things than all the other kids combined. He wears Ed and I out on a daily basis, but man... is he a cutie boy! I can't stay mad at him long, even when he just randomly dumps a whole cup of water on the kitchen floor.

Ed and I are just getting by. Trying to do what needs to be done and hope that all things come out for the best. What else can you do?!?

Please keep Oliver in your prayers...

Music and Lyrics

I've been listening more intently to music lyrics lately, mainly the music of The Killers since those are the CD's that are in my van and my kids are always requesting their songs and I happen to love them. One thing I love about music is that the same song can mean so many different things to different people. We tend to hear things that trigger memories of our own lives and bring all sorts of emotions up. So many songs have so many verses that just stir something in me, especially with the struggles of this journey.

There is one part of a song that hits close to home when I feel like a failure... that I'm not living up to what other people think I should be doing. "And I'm sick of all my judges, so scared of what they'll find..." No one is perfect. I think we are all scared of the skeletons in our closets... the things that we don't want anyone to know about... the things that we struggle with in our daily lives. We all have short comings and we aren't here to judge anyone. I still need to learn this. I think at times I'm learning it the hard way. I just hope in time I can be okay with myself. To let go of things I can't control and give up on trying to be perfect for the people that have no authority to judge me.

Most people that know me know that I struggle with a mental illness and with that comes the sick and twisted thoughts of suicide. One thing I wish people could understand is that we DON'T like to feel this way. We don't say we feel this way to get attention. It is a horrible thing to truly feel like a failure and be so miserable with life, lost, alone and sad that sometimes you really feel that death is the best option. It's such a consuming thought at times when emotions are raging and it feels like you can't physically deal with things anymore. I've felt as though every episode I can get through is a battle that is won. And spiritually speaking I feel that I am up against the devil every day. "I saw the devil wrapping up his hands, he's getting ready for the showdown..." He wants us to be miserable like him and I think that having a mental illness allows him easier access into our minds and helps to distort our thoughts about ourselves and about the reality of life. I can relate to Cinderella in this song... "Now Cinderella don't you go to sleep, it's such a bitter form of refuge. Why don't you know the kingdom's under siege and everybody needs you..." I can see 'sleep' meaning two things for me personally. Sleep as in sleeping excessively as those who suffer from depression often do. It is the only time we can get away from life, from our thoughts and emotions. It is a refuge... a safe place. I can also see 'sleep' as meaning death. Dealing with suicidal thoughts and thinking of 'going to sleep' as a way to shelter myself from the pain of dealing with the emotions and reality of the difficult things in life. The kingdom is under siege... my household and family is under fire from Satan and my family needs me. My kids still need me. My husband still needs me. I don't know... it gets me through my difficult times. It helps me to truly see that I need to keep 'fighting' the devil and his crafty ways. I need to 'endure to the end'. This song makes me cry every time and I think I know what it is truly about which makes me cry as well. Ah... life is hard for so many people... "If you can hold on...
If you can hold on... hold on........................."

"God gives us hope but we still fear what we don't know." This makes me think of Oliver dealing with what he has to think about on a daily basis. He knows what is going on. He knows he's dying and he has hope that he will live again, but he's still scared. I'm still scared of the unknown.

Anyways... there are so many other songs of theirs that stir something in me... these are just a few that I've been listening to a lot.

I'm so grateful for music.

Breakdown city limits... ramblings of life.

Well... life is hard. Period. Oliver's health continues to decline. I've been feeling like I'm on the edge of a nervous breakdown. I feel as if I just can't deal with everything that is happening in my life. My mind races with so many emotions that I'm seemingly fine one minute and wanting to pull a 'Thelma and Louise' and drive off a cliff the next. I however wouldn't be flying over the edge in a sweet convertible with a crazy friend... it would just be myself in a light blue minivan. And... there really aren't any cliffs to speak of around here. All kidding aside, I feel calm enough now to joke about things, but really there are times that I just feel like I can't handle all that this life is throwing at us. Most people who know me know that I deal with things with humor most of the time. I think if I didn't I would be bawling every second of every day.

I'm so tired of being angry. I'm tired of feeling lost, alone, confused, exhausted. This has been such a trying time in life. I really hope this eventually has a happy ending. I don't want to be bitter. I don't want to live life jealous of the families whose children have survived their cancer. I want to be happy for them. Happy that their scans say "NED" (No Evidence of Disease). I'm jealous... I want Ollie's scans to show that the tumor has disappeared... that the cancer is gone. I don't want to be planning a freaking funeral for my 10 year old. I don't want to see his lifeless body laying in a child sized coffin. I don't want that picture imprinted in my memory. I don't want to walk into my living room and remember that 'he died here'. It's not fair. It's NOT fair. I don't want to hear, "He's in a better place." I don't want to hear "It's all part of the plan." I'm sick of hearing that. I'm sick of hearing what I 'should' do and how I 'should' feel. I'm sick of feeling like a failure because I have no control over my life. I have no control over what is happening to Oliver. I'm angry.

What is the right decision? We've chosen to have in home Hospice care and have him pass away here, but I don't know if I can handle being reminded that he died in a certain spot in our home, but I know that he is more comfortable here so I want to do what he wants to do. Obviously if there comes a time when he has to be in the hospital, we'd go there, but I just go back and forth with our decision. There is also the hospice house or the hospital, but we also have three other children. I just don't know what to do.

What is the right decision on funeral plans? I don't even want to have a funeral. I hate funerals. I know sometimes they are called a 'celebration of life', but I don't think I'd feel like celebrating anything. We are debating whether or not to have a private funeral just for family and close friends, but then... the people pleaser in me risks pissing off massive amounts of people. Oh well. I need to get over it. As a good friend said the other day... no matter what you do... you can't please everyone... someone is always mad about something. So true... in our own little world... someone is always mad that I gave them the wrong color sippy cup or made the wrong thing for dinner. UGH... life is hard.

Everyone has their opinion and sometimes... I just don't want to hear people's opinion. Maybe that's why I've been more of a hermit the last two years. I'm just sick of the advice people give without me asking for it. I'm sick of all the 'well you should...' and 'I know exactly how you feel...' stories. I know I 'should' have a thicker skin, but it's hard for me to let things just slide off my back. It's so much easier said than done.

Ed is sleeping on the love seat and Oliver is actually sleeping in his hospital bed with his oxygen on. Usually Oliver is on the love seat and Ed is either on the couch or in the hospital bed. Oliver wants Ed to sleep in the living room with him and be around at all times. I can no longer lift Oliver up to help him use the restroom so Ed is here all of the time now. He's almost used up all of his vacation for the year and will be starting his Family Medical Leave soon. Ahhhh... no paychecks for us... fantastic. Yeah... so financially speaking... we are pretty much at a loss. I just don't know what to do. Cash out our 401 k... I think that is the only way we can live for the next few months. Everything medical is out of pocket now for several thousands of dollars and we have to come up with the thousand dollar monthly premiums. Awesome. Then... to top it all off, Ed tells me that you can only have FMLA for like 3 months... so if Oliver miraculously hangs on until May or June, he may be out of a job. I hope they wouldn't do that to him, but they could if he's missed a lot of work. So... mentally, physically, spiritually, financially... I'm spent. It's not like we live in a nice house that we could downsize... we live in 'a bad part of town' and our house payment is less than what we would pay in rent right now for a rental house or apartment that would house us all. I'm just at a loss. Where do we go from here??? I now see why people drink themselves into oblivion. I just want to be numb. I know that it doesn't help the problem in the long run... but man... it would be nice not to be in so much pain and worry all the time. I'm just at a loss.

It's been hard because Ed and I never have time to spend alone because Ollie always wants us near. It would be nice to get to spend some time with Ed and we NEED to get together and discuss funeral plans. I hate talking about things like that in front of Oliver. We need to do it sooner rather than later, but there is always someone around in need of one thing or another. It feels like we've been living in a haze for the last two years. Nothing is ever planned out in stone because we never know what tomorrow brings... how Ollie will be feeling. We just fly by the seat of our pants all the time. I'm so tired of living in a fog, but who knows if life will ever be how it was before. I'm sure it won't be... I can already feel the change. I'm always feeling sick to my stomach just wondering what is around the next corner. No matter how hard I dig my nails in... the inevitable will happen. Life continues to go on.

I started going to a class at church that will hopefully be able to help me deal with certain things. I didn't feel so alone in struggling with certain things in life. I need to learn to give myself a break... to not be so hard on myself... to keep trying... to hold on. I need to be okay with feeling the feelings that I have. I'm angry... okay... it's okay to not like what is happening in life. Hopefully this class will help sort out some things and uncloud things for me. I need all the help I can get.

The 'What ifs"...

So, what has been on my mind lately???

OLIVER...

Opening wounds in his groin area.
Always on oxygen. When his cheeks are really red that means that he's having trouble so we need to get him on oxygen.
I can't lift him anymore because of my own back problems.
Can't walk without assistance anymore, but tries to because he wants to be as independent as he can be. We are just worried about when he tries and then falls because he's just too weak.
His skin is so stretched out and thin in places because of the steroids that he's on. I'm scared that more areas will rip open and I've heard that it takes a while to heal.
He cries out of the blue and asks about death and heaven. This is a daily occurrence now. I know he's scared of being separated from us and scared of the unknown. He doesn't want to be alone and he doesn't want us, me in particular to be sad. We've been reading him lots of books about death and heaven and hope that it helps to calm him and reassure him. It's been rough because at times, even I don't know what I believe anymore.
He chokes on more and more things, which worries me.
The big question now is when to stop the steroid. Steroid side effects VS. Benefits of steroids. I just don't know how much it's helping. It could be helping him in his ability to still eat, speak, move, walk, not have headaches, etc. On the other hand, the steroids cause massive weight gain in such a short time that the areas of the skin can't handle it and stretch marks can split wide open. It also makes them more irritable and angry with other people. It really is an evil drug. I just don't know what to do. I know we'll talk with Ollie about it since we are always up front and honest with him about everything. We'll see.

FUNERAL ARRANGEMENTS
Who wants to even begin to think about this at any age, much less for a child that hasn't even begun to really live their life yet. It isn't right. It makes me sick just thinking about having to find a funeral home and pick out a casket and burial plot. I don't even know what all goes into planning a funeral anyways. I'm completely clueless and numb at this point, but I know we need to get things planned before Ollie passes because then I will be COMPLETELY useless and wrought with too many emotions to do anything. I really wish I could be at peace and find some shred of strength. I just want to scream. I want to plan some special things for it, but don't know what yet. I'll have to think about it like I'm planning a party. A celebration for Oliver I guess. I don't know... *sigh*

IN HOME CARE VS. Hospice House or inpatient Hospital care
Right now we have nurses coming into our home once a week to check Ollie's vitals. I'm not a nurse, but there are some things that I know to possibly expect to see in Oliver when the time draws near. Thank goodness for the DIPG Yahoo support group where I can ask questions and get real answers from other parents who have been through similar things... been through a similar hell at times. I just want his needs and wants met. For him to be comfortable and pain free in the end. I just don't know how much more I can take, seeing him failing so much... just deteriorating daily. It makes me sick.

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.

MRI -- November 2, 2011

Tuesday, November 2, 2011

Early this morning Oliver had his regularly scheduled MRI down in Iowa City. We traveled down last night and took Jaren and Oliver to see 'Puss in Boots', which they liked. We all got up at around 6 am and headed to the hospital with my mom and brother, Bryan. We always have the MRI first then meet with Dr. Buatti to discuss any symptoms that Oliver is having as well as the scan. It seemed like this MRI took a particularly long time. Ed went in the room with Oliver as he usually does while I waited in the waiting room with my mom, brother and Captain America (Jaren -- we got the costume the night before for 50% off and he LOVED it! -- it's the little things!)

After his scan we walked to radiology where we were led to a room, as usual and waited to hear from the doctor. A resident came in and did some strength and sight tests with Oliver and asked us some questions about medication and the symptoms that he was experiencing. Then we talked with Dr. Buatti. He told us that the tumor had grown. My mom took Oliver out into the children's waiting area as we had some other questions for the doctor.

I asked how much it had grown and he showed us the scan. You could see that it had gotten bigger. It doesn't take much growth to start causing problems as there isn't a whole lot of extra space inside the brain to take up. I asked about reirradiation, something that some DIPG kids have undergone recently, but he didn't feel comfortable doing it because the growth was in the exact same area as it was before and he didn't feel it would help. I knew it wasn't a cure, but longed for anything to provide more time, however I don't want to prolong this journey if there is any pain or discomfort. I also asked the dreaded question... "How long do you thing he has?" Obviously no one knows. He said maybe 6 - 8 weeks. Could it be 4 months? Could it be 3 weeks? It could be any time now. When he started to say '6 t0 8......' I thought he was going to say 'months'.... not 'weeks'. It still doesn't seem real. I also asked if he sees many patients with DIPG and he said a few every year. I wish I knew who they were so we could gain support and strength from one another.

We then talked with the pediatric oncology nurse practitioner who is going to be calling Hospice to set a meeting up for us. We talked with the social worker down there who has been really nice throughout this journey. We also asked about how to donate his tumor for further research. We still need to pray and talk more about this. I just wanted to discuss our options before things get too emotional for us. It doesn't hurt to find out. There HAS TO BE more research done.

We always talk with the radiation techs whenever we are down there for an appointment and I asked Dolly, a woman that helped him with his radiation mask and stuff, if she could find Jen and Mike for us because Oliver was down in the children's waiting area. Oliver was taking a nap with Uncle Bryan on some giant pillows down there so we woke him up so he could see them before we left. They have been so nice to us during this journey. They ALL have. Jenn talked with us a bit and then Mike came down the hall. We talked a bit and hugged and teared up. It's hard to keep it together sometimes.

After they left we talked with a child life specialist who gave us a packet of books to read to the kids about death and grief. We talked about making memories and keepsakes for the kids and even took a fingerprint of Oliver to make into a necklace. I'm worried most about Eden because she's known Oliver the longest (they are 17 months apart) and is the oldest of the other three. She 'gets' more of what is going on. She's been seeing her sweet school counselor, who tutored Ollie last year, since Oliver's diagnosis. I may have her start going to a sibling support group once a month down in Iowa City as well. She's been starting to become pen pals with other kids that have siblings that are battling or have passed away from DIPG. I've read a bit about how children of different ages deal with grief differently. Eight year olds think the world revolves around them and what is happening that day. Four year olds may ask where their sibling is over and over again. I just pray that Phineas will know Ollie through us. I hope and pray that we will have the strength to get through this and be able to give all of our kids what they need. It's so overwhelming.

OVERWHELMED... this describes me these past two years. EXHAUSTED... I'm sure I will know this even more after this leg of the journey is over. I've heard this part is so difficult. I've already felt stretched more than I can imagine... in every single way... mentally, emotionally, spiritually, physically. At times I feel like a wreck just holding on by a thread. I can only do the best that I can do. I keep thinking to myself... don't try and run faster than you have strength. I'm trying to pack a lifetime of memories into two years of my child's life. I think we need to slow down and just enjoy what time we have left. You just want to do all you can to make them happy... to make all of their dreams come true. I think there is a Killers concert in Chicago sometime this month. The kids are always singing 'Human' which I know I have videotaped several times! Brandon Flowers, the lead singer, is a mormon or LDS, just like us and his mother unfortunately passed away a few years ago from a brain tumor. I would have LOVED for him to meet him. One of his other favorite songs by them is 'Don't Shoot Me Santa Claus'. I'm still going to try and find some tickets. He's never been to a concert before and it would be so cool to see them in person!! There are just so many things that as I parent I would love to see him be able to do, people that he would love to meet. We watch Jimmy Fallon most nights together and Oliver LOVES all the games that he plays on there. We are always busting up laughing. He loves Ninja Pinata, which is one of my favorites as well! I know he'd love to meet John Cena, who actually sent him an autographed picture and whose motto is 'Never Give Up'... how fitting for a young child dealing with the biggest test of their life. I would love for him to meet Brian Regan and Jim Gaffigan and tell them that we listed to their shows over and over every ride to and from all of his radiation appointments and laughed and laughed until we couldn't laugh anymore. Ollie had all their jokes memorized at one point in time!!! It was so fun to hear him crackin' jokes and then sneakin' in a smile afterwards. I just love his dimples when he smiles.... just love 'em. Okay... now I'm rambling.

After we left we headed for someplace to eat. Oliver wanted somewhere with a pool table and we usually go to Old Chicago but they don't have one anymore so he wanted to go to Buffalo Wild Wings because of the trivia games you can play at the table versus other teams throughout the restaurant. So if you see a team by the name of 'Spooky' you know they are there playing!! :O) He ordered some cheese sticks and was in heaven eating those. We had fun with Grandma and Uncle Bryan there, too. After lunch, Ollie rode home with them so that Ed and I could make some important phone calls to family and friends that we didn't want Oliver to have to over hear. The whole way home I would be okay one minute and bawling... 'the ugly cry'... the next minute. My eyes are burning while I'm typing all of this. Life just doesn't seem real right now. Sometimes I feel okay, sometimes I feel like I'm completely on the edge and bawl at the drop of a hat. At least Jaren was in the car, belting out "Human" for us to make us laugh and then cry because it's one of Ollie's favorite songs and made my thoughts turn back to him and what is taking over his body. I'm just at a loss.

It was raining the whole way back home, how fitting that even the heavens are weeping. Hospice called while we were just getting back into town and we set up a time to meet with them in our home on Friday at 11 am. I suppose we will learn more later. My biggest priority is dealing with any pain Oliver might be dealing with and that we can all be together as a family at this time. I need all the prayers I can get. Please grant me patience, understanding, serenity, peace, strength, faith, and an increase in love and hope.

We talked about funeral arrangements and will be looking into those things the next couple of days. Headstones, cemetery plots, funeral home and such. I also am looking into different memory making activities or crafts that we could do together or individually as a family to honor and remember Oliver if the time comes where he won't be here. I got several things at Micheal's to do handprints and such. We'll be working on those soon!

He was crying tonight when we were talking about how he touches peoples lives and he said that he's only touched one person's life... a little boy at McDonalds a few years ago, Oliver gave him his toy that the boy wanted. Ollie said it made him feel special inside because he was thinking of others. It made me so sad though to think that he really doesn't feel like he's touched people's lives. I want people to think of how he has touched their lives and if you would like to write him or us a letter telling him how he's touched your life or changed it, please send it to us at:

Oliver Palmer

417 Oaklawn Avenue
Waterloo, IA 50701

I think he could really use that knowledge right now. I hope that he'll get some mail and see that he's touched people that he's never even met! He is such a sweet, compassionate and loving kid and always has been.

We talked with him about his fears and Ed told him more about why we are here and what this life is for. I think that eased his fears a bit. I can't imagine being a 10 year old kid and knowing that you were going to die in the near future. It makes me queasy to even think about. He's so brave and strong and NEVER EVER complains about any pain or anything. I need to take some lessons from that kid... we all do.

Anyways... I hope that he will get some upbeat letters soon to show him that he is in fact loved and that he has 'TOUCHED PEOPLES LIVES".

Thank you all so much for the continued prayers that have been offered in our behalf and keeping Oliver so close to your hearts. He is always continuing to amaze me. We'll keep everyone posted as to how he's doing. I still have a bunch to blog about from the last two months of craziness so don't forget to scroll down as I play catch up. Thanks again...... <3

MRI Tomorrow

August 30, 2011

Well, Oliver's MRI that was originally scheduled for September 14th has been moved up to tomorrow. The increase in symptoms has worried us tremendously. Who knows what tomorrow will bring. I pray for good news, but expect the worst. I expect to hear that the tumor has grown. The dreaded word... 'progression'... something I never want to hear in regards to this horrid disease that has embedded itself in my child's brain. My stomach is churning right now and we aren't going down to Iowa City until tomorrow. His MRI is scheduled for 11:05 am tomorrow. Please keep Oliver in your prayers. PLEASE pray that his tumor has NOT grown. Pray for a complete healing. I KNOW that Heavenly Father can heal him if it is HIS will. It doesn't matter WHAT we do here because He is ultimately in charge. Although I struggle at times with my faith... that is something that I truly feel. I don't know if I'm angry at the idea of not being able to be in charge, to not be able to do anything for Oliver. It is NOT in MY hands. It is NOT in the DOCTOR'S hands. It is NOT in OLIVER'S hands. It is in Heavenly Father's hands. Although I know that, I am still so saddened and angry because I just don't know WHY yet. Knowing this doesn't take the pain away. I get so frustrated when I hear "You just need to have faith and he'll be healed" or "My child BEAT this disease" as if their fate lies in our hands. The kids who are survivors aren't STRONGER or MORE IMPORTANT than the children that have passed. It was just Heavenly Father's will. You may have faith that they will be healed, but it isn't because of your faith. It was just Heavenly Father's will. Anyways... just had to get that off my chest.

I've been following MANY blogs about other kids and their families' journeys with DIPG. We are all at different stages. Just tonight I've read a blog about a mother grieving after her daughter's passing 11 days ago and how difficult it's been to go through her things, a blog about a little girl passing just tonight and a blog about a little boy struggling with skin irritation and pain because of medicine and this disease. This young boy, Caleb, was diagnosed one month after Ollie so I've been following his blog from the beginning. He's had a second round of radiation and his health is declining. Oliver has his MRI to see if his tumor is growing. As I'm typing this another child will be diagnosed, another child admitted to Hospice, another child showing the first signs of this disease while their parents are completely unaware. It just makes me sick to think about.

Again, please pray for good news...

Moving up Oliver's MRI??

Oliver's next MRI is on September 14th, however, his speech has drastically gone downhill. It's very difficult to understand what he is saying now and sometimes sounds like he's slurring his speech. Just within a matter of two weeks, it's gotten worse. Ed called his doctor down in Iowa City to try and move up his MRI date, but we haven't heard back yet. We just are at a loss for what to do right now. It's so difficult watching his health slowly decline.

I've been wanting to call Hospice because I heard that they're a good resource for different things throughout the medical journey and not just the end. They provide counseling and other things as well as palliative care. We'll talk with them and start meeting with them as well as talk to the doctor and see what he has to say.

**I had a dream about Oliver last night. We were at the airport and then at Disney World, but he wasn't with us. In my dream he had recently passed away. I saw large posters of pictures I'd taken of him lining the walls at the airport and then it hit me that he wasn't there to enjoy his trip with us. It was such a real dream. Too real.

Yesterday Ed and I had Jaren and Phineas with us for lunch at Culver's. I was looking around the restaurant and realized that other people had no idea that we were talking about what to do about our dying child. End of life care... etc. This is our life. This is real and it makes me ill thinking about it. Maybe hospice could provide information about what to do with regards to cemetaries, headstones, funeral services, etc. I just have no clue about all of this and don't want to think about it. One thing I have learned is that you need life insurance for your entire family. No one ever dreams that their child with die before them, but it happens... it IS happening. Make it a priority to talk about it with your spouse. It's nearly 10,000 for a funeral. We only have 2,000 dollars for health insurance. I don't know if there are other ways financially to receive help or not. Maybe hospice would know more. No one wants to think and plan for these things, but you just HAVE to.

Anyways... we'll keep you posted on what we hear from the doctor. As it stands now, September 14th will be his next MRI date.

Reaching out...

Most people think that when you need help you should just ask someone, but when you are in the MIDST of that struggle... it feels like you're paralyzed. When you are in the depths of despair and pain and hopelessness you don't have the energy or the strength to ask for help. It's hard enough just to get out of bed every morning. There are days where I don't shower, don't brush my hair, hardly eat. I feel like a zombie. I don't know if it's from my medication or just from depression and stress and sadness. When I'm in my rational state... I KNOW what I NEED to do. It's the DOING that is difficult. It's like a 10 ton boulder is placed on my chest and I can't move. Everyone freely gives advice (most well meaning), but most don't 'get' the pain and difficulty that a mental illness creates.

I feel as if I have done a lot for myself to try and DO something about it. I see a counselor that specializes in BPD or EID (Borderline Personality Disorder / Emotional Intensity Disorder), I attend group therapy with several other ladies that struggle with it which teaches ways to try and manage the emotions -- the distorted thoughts, I take medication which helps the depression (I don't know if it's effective anymore). At times of intense emotion, sadness-anger-despair, I struggle with the urge to cut myself. I don't understand why. I wish I didn't have that urge because I feel like a freak. Most people that know me don't know this about me unless they see the scars on my arm. It's not something one freely admits to. (Hopefully someone will be helped by reading this and knowing they aren't alone.) LOTS of people abuse drugs and alcohol, I don't drink or do drugs, the way I deal with stress and intense emotions is to cry or cut. Being in group therapy has helped me learn how to distract and try to manage emotions BEFORE they get too out of control. It doesn't always help... especially when dealing with stressful situations.

Perfectionism is also something that comes with BPD. I feel like I should be able to do things for myself. It's horribly difficult to ask for help because of this. I get angry at myself if I can't do it on my own. My expectations of others are high which is difficult because when they don't act how I think they should, it's hard to deal with. We are taught that family should help one another out... friends... church family, in times of happiness and sadness. This has been one of the most difficult things for me, personally, to deal with at this time. It's hard to deal with these people failing you. I feel like certain people have failed me in the time of my greatest need so far in life. I'm so hurt... and it comes out in anger. I'm disappointed. I know that I am not alone in these feelings, as I've talked with lots of other families dealing with the illness or death of their child and people can't handle it so they just don't deal with it. Granted... some people may not realize they are doing it, nevertheless... it still almost breaks you. It's like people are ignoring the 'elephant in the room'. I know that my expectations are high and when I'm doing well, I can understand that people are busy and that they can't read my mind, but when I'm not doing well and my illness is getting the best of me I feel like 'why don't they care?', 'I can't do this without help', 'I don't have the energy to reach out to people', etc.

I feel like I'm crumbling some days. I'm slowly dying. Life just doesn't seem real anymore. I feel like I'm waiting... just waiting for something to happen. I'm like a zombie, just going through the motions. On good days, I feel hopeful, able, happy to have Oliver, grateful. On bad days, I just want the pain to end. The uncertainty, the pain, the sadness, the hopelessness. I'm watching my child slowly die. How the hell can I be grateful for THAT trial? I am angry with God. I don't understand 'the plan'. I WANT TO IN THE WORST WAY. I want to feel like it will all be how it's supposed to be, but I can't honestly believe that at this moment in time. I.AM.STRUGGLING. I feel like the world is just spinning and that feeling is gone. That feeling that everything will be alright... is gone. Whenever I struggled with depression and my mental illness was raging (before Ollie was diagnosed), I always had the knowledge of 'the plan' to fall back on. You don't want to admit that you think of ending your life, but the thought lingers. It feels like it would solve everything, but then again I think, what will it solve? What waits for me in the next life? I'm having a hard time believing the things that I've been taught. My testimony of things I once felt, is nearly gone. The time in my life where I need it the most... is when it's fading away. I just don't know anymore. I don't know what I believe anymore. All I know right now is that I am in a tremendous amount of emotional pain and there is no end of my hurting and aching in sight. I realized the other day that two of my four children have multiple life threatening diseases. Oliver -- asthma, allergies, cancer and Jaren -- asthma, allergies, autoimmune disease: Eosinophilic Esophagitis. People don't think allergies and asthma are dangerous, but when you see your child struggling to breath, watching men in your living room taking vitals and carrying your child out to the ambulance... yeah... it's life threatening. I know people say that God doesn't give you more than you can handle. I'm not so sure I agree right now. I'm hanging on by a thread.

"HURT" - Johnny Cash

HURT - Johnny Cash

"I hurt myself today
to see if I still feel
I focus on the pain
the only thing that's real
the needle tears a hole
the old familiar sting
try to kill it all away
but I remember everything
what have I become?
my sweetest friend
everyone I know
goes away in the end
and you could have it all
my empire of dirt

I will let you down
I will make you hurt

I wear this crown of thorns
upon my liar's chair
full of broken thoughts
I cannot repair
beneath the stains of time
the feelings disappear
you are someone else
I am still right here

what have I become?
my sweetest friend
everyone I know
goes away in the end
and you could have it all
my empire of dirt

I will let you down
I will make you hurt

if I could start again
a million miles away
I would keep myself
I would find a way"

Caring Bridge vs. Blogspot

Just thinking tonight how much I wished I had started a Caring Bridge site for Oliver at the beginning of this journey. I just was already familiar with Blogger as I had a blogspot for several years already. I read so many Caring Bridge sites and am uplifted when I read so many of the kind words posted. Then I come to Oliver's page and day after day I see 'no new comments'. Now I can't speak for every parent that is going through something like this, but I can say that it takes some of the sting away when someone lets you know that they care. It's like hearing them say, "I see you. I'm thinking of you. I'm praying for you." I don't know if people just don't know how to use Blogger and leave comments or what it is. On facebook, or other websites I just leave hearts to let other people know that I don't have words, but I feel their pain in my heart and want to let them know that I recognize and validate their feelings. Maybe I'm just looking for validation. Who knows. Just something that's been bugging me for a while. It's a lonely place to be.

Progression??

Well, it's after 3 am. I can't sleep. Oliver's benefit is tomorrow and I've been working on getting things finalized on my end. I'm feeling sick to my stomach right now as Oliver hasn't had a good day today. He's been falling a lot and complaining that it's harder for him to walk. He's been choking on things including his own saliva. He choked on some water and coughed, nearly vomiting in the kitchen. It's been harder to understand him lately and I've had to ask him to repeat himself a lot. He's also been crying... a lot... for no reason. I've been working on a slideshow and we were watching it and he burst out in tears and said that he didn't know why he was crying. He told me that he thinks it's from the sickness. I think he fears the same thing that Ed and I do... progression... that the tumor is growing again. I don't want to believe it. Maybe if I just stick my head in the sand and pretend everything is all right... it will be. Unfortunately I know all too well that I can't run away from this. His next scheduled MRI is this Wednesday, June 15th. Please pray for strength, peace and comfort, especially for Oliver as I can sense his uneasiness right now. We'll keep you all updated...

Tears...

Thursday, June 9, 2011

It's amazing how much I want to be strong. I want to be able to gracefully get through this difficult journey -- to say that I have the utmost faith that everything will be okay... that my family and I can get through this... that Oliver will be healed. Most days I have the faith that everything will be okay and that one day we will know why this has happened. I know the things that I 'should' know, but I just can't wrap my heart around it. Today was not a good day.

I've been extremely stressed lately for many reasons. I've had a change in medication, have been having horrible headaches, stressing out over Ollie's benefit, fearing for what Oliver's MRI will show next Wednesday, saddened to hear of other children being diagnosed with cancer, with DIPG. It makes my heart ache... truly ache for these families because I know more than most what they are feeling. Granted... all of our journeys are different.

I've been learning how to create a slideshow on my own for Oliver's benefit and I've spent hours trying to fit things together while my 18 month old stands by my side whining to be picked up. He's a very clingy little stink right now! He usually sits on my lap while I try to figure it out. He loves looking at photos and watching home videos on the computer. However, today as I was working on it, I just burst out in tears... bawling. So many thoughts raced through my mind. Why was I making this video? How can I capture Oliver's personality and let people that come to his benefit truly see who his is? Will people ever know what a sweet boy he was and how funny he was if he loses this battle?

We are trying to make a wish come true for him. Things have changed a lot in the last 18 months and I want to do what I can to make him happy. I'm making a slideshow for my son that has a brain tumor that could kill him and statistics have shown that it most likely will. I'm making this slideshow to show at a benefit so that we can take a trip that may be his last big trip. This is not right. This should not be happening to us. I just can't do anything but cry and now I have a huge headache. GAH!!! I feel bad because people ask what they can do, and sometimes I don't know. I can't transfer my grief to someone else to take for a bit. I feel numb today. I know that I shouldn't have these thoughts, but again... I can't help it. They weasel their way into my head and wreak havoc on my mind. Some days I don't know how much more I can take. Everyone says that they don't know how I do it... that I'm stronger than I realize... if they only could see how I weep when I'm home in my room. If they only knew that I struggle so much with the will to live... struggling with wanting to end it all and be free from the emotions and pain of this life. I always thought that my mental illness was my biggest trial to manage in this life. That coupled with the reality of possibly losing a child is nearly unbearable. I really don't know how much more I can take. Day to day... hour to hour... minute to minute. I mean... really... minute to minute. At times I'm bawling and nearing the edge of all sanity and then 20 minutes later, I can deal with it. Sometimes I just return to the former numbed feeling and feel like I'm zoned out.

I'm hoping that I can get my medication figured out and these episodes will be fewer and further between. Most of the time I am sane and have fun with the kids. Other times... not so much. I've been lucky enough to meet a great counselor that I've been seeing since about a month after Oliver was diagnosed. I've also started going to group therapy for my mental illness and learning ways to try and manage the disease. It is a lot of work and thank God for medication. I am blessed to have found a counselor that I click with and that understands my illness and helps me probably more than she realizes. Climbing back out of the hole I've been in for the last day or two... waiting for this headache to go away. Going to bed and hoping for a better day tomorrow. I want to be well for Ollie's benefit on Saturday. I want to just BE WELL.

Learning to Give

This last 16 months have taught me a lot about myself and has given me an opportunity to really and truly see myself. I always thought I was a kind person and cared for others, but until Ollie was diagnosed and I saw complete strangers showing compassion and kindness by acts of service, I didn't realize that I didn't fully act on lots of the ideas and thoughts that I'd had. I was comfortable in my own little bubble and was kind to my friends and served them as well as my family, but rarely did I go outside of my comfort zone to reach out to others in service and kindness. I'm grateful for the opportunity to be able to do that now. To reach out to strangers and ACT on the feelings and prompting that the Holy Ghost gives. I have my own plate that is full, but I find that it helps to reach outside of myself and serve others with a kind word, a hug, or just an ear to listen. Also finding ways to serve others has helped me tremendously. I want to give back to others and do all I can with my life... so I have something to show for it. I don't want to take any more days for granted. We can ALL do SOMETHING! Anyways... sorry for the after school special type message, but it's what I feel. :O)

Thinking...

Life keeps moving forward whether we want it to or not. I wish I knew what tomorrow held. What next week, next month, next year holds. The fact is... I don't. None of us do. We have to take each day as it comes and deal with whatever needs to be dealt with. We've always tried to do fun things with the family and make as many memories as we can, and since Oliver's diagnosis, that has become even more important. We were given the diagnosis, the prognosis and were made to see what is really important in life. I tell my kids I love them every day. I hold them and cuddle them, and yes... and I still yell at them and get mad when they don't listen. Motherhood and responsibility never stops! I am truly grateful for sacrificing a paycheck and being able to stay home with my children. It is a difficult job, but one I wouldn't trade for anything. I'm grateful that I took the time to play with my kids, read to my kids, cuddle and do crafts. My house is always a mess, but many memories were busy being made and those are the things we will remember.

We have been able to do many things together as a family this past year and I always ask the kids what they want to do and where they want to go. Oliver had said that he wanted to go to Disneyland again and Ed and I thought about it, crunched numbers, but decided that we couldn't pull it off. A new friend and fellow cancer parent decided that he wanted to do something about it and is putting together a benefit for Oliver so that we can go to California. It will be held on June 11 in Waterloo, Iowa at the Pepsi Pavilion on the National Cattle Congress Fairgrounds from 4 - 9 pm. You can check out the BENEFIT FOR OLIVER PALMER page on Facebook. He is still planning the event which will have a silent auction, bake sale and kids activities and is looking for any donations for the auction and bake sale. If you'd like to help you can email me at edstacypalmer@msn.com and I'll let Woody know.

Whatever the turnout, I am grateful for the love and support of the people that care about Oliver and want him to be able to make memories and enjoy the time he has. It's hard to plan things given the reality of this disease and I pray that his health remains stable for him to be able to make more memories with us... hopefully for YEARS to come. The harsh reality is that things can go from our 'new normal' to downhill within a day, but we still need to move ahead and hope for a miracle for him, continue to plan and live our lives. Sometimes that is all easier said than done. I know that I've done the best I can to make memories with the family whether on vacations, trips to the park or doing crafts at our dinner table. Not only is Oliver making memories, but these experiences with him will stay with me forever.