"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...

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.