"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!!!

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...

DIPG Kids - Sweet Valentina

VALENTINA BRAVIN

Age: 5
New York
Diagnosed on 7/21/11 at 4 1/2 yrs old.

Valentina Bravin's caring bridge site

This was taken from their most recent blog post about Valentina's health...

"Unfortunately, this most recent MRI report of 1/12 indicates disease progression as well as spreading into the cervical spinal cord and other local areas of the brain and auditory canal. Not at all what we expected to hear. Talk about being blindsided..."

"PROGRESSION" is a term that no parent wants to hear with regards to cancer. It means that the tumor is growing and usually growing rapidly. With DIPG... progression usually means there is nothing much more they can do for your child. The 'grasping at straws' portion of the journey. Whenever I hear of another child going through the different stages of the journey it really makes my heart stop. I can put myself in their shoes and can understand what they are going through at times, while other times, I can only imagine what lies ahead for Oliver.

Please keep Valentina and her family in your prayers. We ALL need something to hold us up and gift us strength to deal with so many things on a daily basis.