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...

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?!

"GRYFFINDOR!"

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?

"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...

Valentine's Day - "Let's SHARE THE LOVE"

Valentine's Dinner 2007

Valentine's Day is the one of best times of the year to let someone know that you love them. Our annual Valentine's Day dinner is one of Oliver's FAVORITE family traditions that we started when he was probably 3, so for the last 7 years, every Valentine's Day dinner is spent with our family... the ones we love the most. We go all out and have candles, rose petals, dim lights, light classical music playing in the background and fancy Italian foods.

I think it would be fun to challenge everyone to tell at least ONE person in your life how you feel about them... good feelings... we are trying to spread the love here!!! Sometimes we let life get too crazy, we are too stressed and overworked to say those three simple words. People need to know that you love them because you never know when life will no longer give you that chance to say it. It doesn't matter how you do it, face to face, in a card, poem, song or through a gift of service. Be nicer to one another and the love will more easily flow. Anyways... just a thought. Oliver has inspired me to be kinder to people and has made me realize that they may need the love that someone is not giving to them. You never know the pain someone is hiding behind their smile.


LOVE NOTES to OLLIE
If you'd like to send Ollie a Valentine's Card and tell about the effects of your challenge that would be great! I don't know if he will make it to see Valentine's Day or not. Things have been happening more and more that lead us to believe that he may have weeks to days left. I'd love to see his face when he gets the 'love' notes from people that he's inspired to do better, to be better and to keep trying no matter what. I know it makes a difference to hear it from someone other than just mom and dad. :O)

The Lovable Oliver Palmer
417 Oaklawn Ave.
Waterloo, IA 50701

I'm trying to think of other special things to do this year to make it a little more special for him since it may be the last holiday we get to spend with him... if we are to be so lucky. Thank you for sharing the love!!!