Wednesday, February 8, 2012

"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...


teamgile said...

I've been reading your big for a while and I'm sorry for all you have to go through. It is just heart wrenching.

I'm not trying to defend people, but at times I wonder if they plain have no clue what to do. They are so sad for you that they just withdraw. I am not condoning this action. I think it is wrong, but maybe they just can't emotionally come to you???

I am sorta in the same boat as those people. My best friend died recently giving birth to her 8th child. I feel like a part of me died inside too. The family lives 5 ours from us, so we can't see them all the time. But I struggle with how to help, what to say, what to do. I want desperately to be there for them, to be a mom to those kids, but I don't know what that looks like.

I pray A LOT! We visit on occasion. I do what I can via email. But it's painful and hard.

Just wanted to give another perspective. Know that I pray for Oliver too.

May the Lord continue to lift you up during this difficult time. I can't imagine what you are going thru.


Lisa Wilcox said...


I am SO sorry for everything you and your family are going through. I do believe what you are having are panic attacks. I am the queen of panic attacks so I'm way too familiar with them.

You have every right to feel angry at the people who have seemed to abandon you during your greatest time of need. Not that you need my permission to feel that way! No one has the right to judge you!

I pray for your family, esp. sweet Ollie, every day. I wish I had words that could take all this away and give you some peace. All I can say is bless you, and bless your precious Ollie.

Anonymous said...

life isn't roses and sunshine. We go through things that nobody should every have to go through. The feelings and thoughts are totally normal and justified and you should never have to pretend or smile. Your going through hell and have every right to be angry as well, questioning others actions. Vent when you need to vent, smile when you need to smile, cry when you need to cry.
For those who have never dealt with depression, or illness (of themselves or a family member) they will never understand the thoughts, feelings, and absolute despair. Somedays I would love to shed my skin and live in silence. Somedays are better some are worse How do we make it through it, just breathe baby.

Rachael M said...

Oh gosh, can I relate to the stupid things people say on FB and in person!!!! The one that I really, really hate is "God doesn't give us more than we can handle." First of all, I think that makes it sound like all of the crap we go through in life is dealt to us by God, which I don't think is true. I think he ALLOWS us to go through awful stuff, but I think a lot of it is dealt to us by other people. But the main thing that ticks me off about it is that it seems like a pretty way to say, "Suck it up. Stop whining" when in fact the person who says it has no real clue what you're going through. I often wonder if the person saying those things ever actually suffered tragedy, death of parents or children, mental illness, chronic ill health, or unemployment/underemployment (despite working your hardest), etc. Because it doesn't usually seem like it.

I find myself nodding along to everything you wrote about depression and feelings of suicide. It is a daily, sometimes hourly battle that makes the sufferer feel that the world would be better without them. It is far more complicated than just counting your blessings. It is a fight that I don't think anyone would want to have to face, yet some of us have to do it for most of our lives.

Oh, I wish I could just hug you and Ollie and take this all away. I remember saying not long before my own son died that no mother should ever have to bury her child. And to watch your bright, beautiful boy suffer for so very long must be an incomprehensibly hellish ordeal, one I can only imagine-- one that no one should ever have to endure.

Know that many people love you and cry and mourn with you, even though we're too far away to be that everyday help that you so need.

Carie said...

You are going through a lot right now. You have been since Ollie started his journey with DIPG. I cannot say that I know what you're going through. Because I don't. The trials in your life blow mine out of the water. I am constantly thinking of ways I can help your family, but the distance between us is the only thing keeping me from making your family meals, lending an ear/shoulder, watching the kiddos, etc. I hate that it's the distance that keeps me unable to help you bear your burdens. So I'm only left with few options on what I can do. I've sent Ollie a Christmas card, his Valentine is in the mail, I spread the word about him at our Branch and encouraged others to send Ollie some love, I've handed your blog address out and encouraged people to donate to your family, and I pray every. single. day.

I want you to know that you're human. I know you know this, but the reason I say it is because you are allowed to break down, scream, cry, laugh, etc. Do what you need to do. It reminds me that you're not a robot who only posts the good in your life as well as Oliver's. It allows me, as well as others, to get a small taste of what you're going through. I'm happy when Ollie has a good day, I break down when he has a bad one. I have sat in front of my computer sobbing on numerous occasions because of the hard times and just how much Ollie amazes me. That little boy is so, so special. He has a wisdom about him that I have not attained in my 24 years here on this earth.

From our family to yours, we love you all very much. We're doing what we can to help you bear your burdens from a distance. We will continue to pray for you and your family. Every. Single. Day.

Valentina's mommy said...

U dont owe anyone a fake smile or need to pretend. This is the worst mind-f*ck...especially for a parent. I can honestly say that I have thought daily of us all getting in the car and driving off a highway or bridge just so we can die together and spare the pain of losing my beautiful daughter. Oddly enough my husband says he thinks the same thing. We are struggling together. And ur right, the people closest to u end up needing consoling and emotional support as opposed to giving it to us who need it most. Its total bullshit but thats life. And life just sucks right now, in this moment, from diagnosis and probably beyond death.

Anonymous said...

You should definitely say what you need to say because if it offends anyone, then those are the people that are obviously guilty of what you are talking about! I haven't been in your place but I do know what it is like to lose a child because I have lost 2! People just don't understand if they haven't been there and they are the ones that tell you that you should do this or that and you should be over it by now. Don't let anyone drag you down with the stupid statements of 'that is the way it was meant to be' or 'he is in a better place'! Even though he may not be suffering when he passes, it still doesn't help to hear those things because YOU are still hurting and even though it may be God's choice when to take someone, I still don't find it comforting in the statement that it's the way it's supposed to be! That really just works my nerves and people don't get it! It is just fine to feel the way you do and you absolutely should not feel guilty for what you think or how you feel! It takes more of a toll on the parents than it does on anyone because you are the ones that have to watch and wait for the day you hope never comes. And you have to be there for your other children and try to be happy for them even though you are wanting to die yourself because you can't take the thought of losing a child! It is going to be totally normal for you to feel like you don't want to go on anymore and that you want to go to be with the child that you have lost so be prepared when that thought goes thru your head! Just work thru it one day at a time! Believe me, I have been there after I lost my premature baby! And even though it is one of the other statements that really gets annoying when you lose a child or any other loved one, it honestly does get better over time! You seriously have to just take it one day at a time and work thru your emotions as they come! Just let tears flow when they need to, no matter where you are or who you are with! I read your blog every day since I heard about Ollie and I can't say that you are saying anything that doesn't make sense! If there are people that don't see it that way or that don't like what they read then they are the ones that don't deserve to be in you and your families life!

Janene Wawro said...

Stacy, it's just hard. Every single bit of what you are going through is HARD. And you're right, you absolutely have the right to vent and share your feelings anytime you want. I gotta say though, your comment about drop-kicking people did make me giggle a tiny bit...the mental image of that was a really good one. LOL! Girl, you know I love you and my heart just aches every time I think about all that's on your plate, your sweet little Ollie and his massive, ugly disease, and the challenges you have to face every minute of every day. Please know that you are LOVED!!!

Shar said...

lay it out sis. damn right it's your blog and you can vent if you want to. even if you feel weak, like you said, it's a victory to you that you are still here. give yourself credit for it. and you're right, no one will completely understand what you are going through, except God. let Him help you carry this burdon. i love you stac and i'm sending you hugs from the oregon coast.

Lisa said...

My heart aches for you and your family. I wish you didn't have to go through all this. Just want you to know that we are still praying for you.

Anonymous said...

What can I do? Yeah I ask myself that question all the time and I want to do something but I just hurt. There is so many days that I don't leave the house and all I want to do is sleep. I hate myself more than you know. I am guilty and I know I am not the greatest friend but I do pray for you and your whole family all the time.

Anonymous said...

"People cry not because they're weak,but because they've been strong for too long."
I saw this on Pinterest, don't let anyone tell you how to feel until they've walked in your shoes.

We are praying for Ollie - I found your story on a blog that was encouraging people to send him Christmas cards.

I admire how you've been able to be so strong and so real about this journey while i'm sure it is tearing you up inside!
I'm sorry that your family has to go through this :(

meghan said...

I am so glad that you decided to just lay it all out there. I think sometimes honesty is good for the soul. My heart aches constantly thinking of what you all are going through, especially sweet Oliver. It seems like he was just running around your apartment in a diaper getting squirted with a spray bottle, and now we are here and there is this terrible monster taking him from you all. From all of us. It is heartbreaking. I think you have every right to say what ever you want. I love ya!

Anonymous said...

Your post is very real. Sometimes it is good to avoid FB because people only put the great and wonderful from their life on there. It isn't a realistic picture of our lives, our weaknesses, or our struggles. Hang in there. Many people are praying for and thinking about Ollie, you and your family. I think that the last few sentences of your post are right on the money.

Anonymous said...

I have been following your blog for a while now, you don't know me, but I was lucky enough to meet Ollie a few weeks ago.

I have struggled off and on for years with depression, and I found myself almost rejoicing because I agreed whole-heartedly with every single word that you said. THANK YOU for putting into words what I can' has brought some light to my day.

Ollie will be free...and I mean truly FREE, with his Lord and Savior soon. I am not going to be ignorant and say that your journey after that will be easy because it certainly will not be, but know that you will spend an eternity with him in what is really a short amount of time (in the grand scheme of things).

Prayer to you and your family,
You are in my heart ALWAYS.

Angie said...

Oh hun, I can't even imagine what you are going through right now! Don't EVER feel like you need to defend your right to vent about the situation and express your feelings. I can't speak for you, but I bet just doing that is one of the very small things that may possibly keep you going is to get all this off your chest!!!!! I do agree with the ridiculous CRAP that is posted on FB and I think if I were in your situation, just about every single status update would piss me off. People just don't get it.

And I am truly sorry for the lack of support you have felt. My friend and I were actually the ones sitting a few rows behind Ollie during the hockey game a few months ago. I told my friend, Britt, "I think that is Oliver, I read their blog!" She said I think so too!!! And I am so glad she decided to come up and introduce herself. I know it is hard to believe how you could possibly receive more support like that then from the people you actually know personally!!! I do agree with one of the other commenters that sometimes it can just be hard to figure out what to say, BUT I also feel like sometimes all someone needs to do is just BE there and LISTEN. Its not always about having something to SAY and I think some people can't get past that fact!!!

I know it is not much, but I sure will continue to support you through blog land and anything else we can do (esp since I am in the town!) and I hope others will follow suit. It may feel like you just want to give up and that is totally normal too. Just keep doing what you're doing which is being a GREAT mom to Ollie!!!

Shar said...

i've been thinking about this since i read your post yesterday. (i still agree with my first reaction and comment...this is just a deeper thought. jack handy style)
i believe that people are innately good. i believe that love, compassion and a desire to help are inside of us. i also know that because of our life experiences, how we were raised, how we feel about ourselves, and a million other factors come into play when it's time to act on this inborn goodness.

unfortunately it seems that often when people don't know how to act, they don't do anything at all. i'm not gonna lie, after i read your updates and i sob and kiss on my babies, i still have that feeling in my throat like i'm eating cold french fries and i want to distract myself from the sadness i feel for you, i do get on fb and make stupid comments.

i know there is no escape for you and i feel like a fool having only experienced 1/100000000000000000 of what you are going through and still feel so saddened by it.

i guess what i'm getting to here is even though people are idiots and don't always know how to be an effective friend or support to you, we still love you. there is an unseen power in the prayer and love that is being sent your way. greater than any one of us could do on our own.

i don't know if this is coming out right or making any sense, but just know that you are loved my friend. so very, very much

Anonymous said...

You are incredibly strong and brave. Don't feel bad about venting, ever. I want you to know that I pray for your family every day. Oliver is such a brave little boy and I wish I could take this away from him. Just keep all the memories close to your heart. Ollies. Very lucky to have such a great family.

Anonymous said...

What can I say Stacy, so sorry :(

Karen said...

I'm sorry you haven't gotten the support you needed during this difficult time. I really can't imagine what you're going through, no one can unless they've been there. So for people to tell you how to act or what you should be doing is insensitive and insane. Just remember that Oliver needs you, as does the rest of your family. Don't feel bad for your thoughts. You have every right to be angry, sad, depressed - whatever. This is the worst, most horrible thing that could happen to a person. Honestly, I would rather die than go through what you're going through. I think anyone would agree. And if they don't they either don't have children or they suck. Don't be afraid to ask for support or help. Maybe people don't know what to do?

Sherri said...

I found your blog through someone else's, mentioning your family needed prayers. Thank you for putting your thoughts out there and I am glad you didn't take them down. I've struggled with depression for as long as I can remember. My mom left my dad (and her children, basically) when I was 13. My older brother, Stephen, killed himself a year later. I was put in the hospital a year after that because I was struggling so much. My younger brother, Brian, killed himself 14 years after that when I was married and had 3 kids (now 5 kids).
After Brian died, it was the hardest thing for me to hear "Oh, it was his time" or "Oh, you'll be okay, you have your kids to take care of." Yeah, that makes it all that much harder to go on. I've had the hardest time just wondering what made me different from my brothers; why have I kept going? Why did I drag my innocent hubby and 5 beautiful children into the mix? I hate adjusting meds, having to work w/people when I'm depressed, whether through my childrens' schooling or church or wherever. I, too, feel people have no clue what is "hard" in life.
I LOVE walking into a book store and seeing books "how to be happy" when the author seems to have a perfect life and find it so easy to tell us "unhappy" people how to get through it. You can usually tell they probably haven't experienced the "hard" stuff. I've had to deal w/issues, especially from my younger brother's death that I don't ever think will get resolved. One of the hardest things is watching other people take for granted good parents, a good upbringing, having enough money to do most anything they want. It's hard not to wonder why you get all the crap -hard stuff. Maybe I could handle my diabetic hubby and 3 yr old and crazy mom and financial hardships better if I had a "healthy" brain.
My thoughts and prayers go out to you and your family. I can't imagine having to go through what you have and are going through right now. For me, the hard part was after the funeral, after all the loved ones went back to their "normal" lives and I somehow had to eventually, too. What made it all worse was that everybody was afraid to talk to me. I felt alone and judged but that probably was not the case. My heart goes out to you. I hope you find people reach out at this time and that you can feel peace and comfort. :)

Anonymous said...

I can't begin to imagine what you have experienced in all of this. I feel honored that you have shared all that you have. At the risk of sounding patronizing, your strength really is amazing. I really am humbled and moved by what you have shared.

On the topic of suicide, though, I must point out that the pain doesn't go away if you succeed in the attempt. It is merely magnified and transferred to those you love. It tortures all of them for the rest of their days. Instead of lightening the burden that one might feel that they are, the burden is forever made larger and forced on the ones you love the most when you choose suicide.

Please think carefully.

May the Lord's Peace be upon you and your family always.

TylerandBrianne said...

I am so so sorry Ollie and your whole family are enduring all of this. I just found your blog today. I am just so truly sorry.
I want to share my favorite two quotes I have heard. 1. Make lemonade out of the lemons you have been given. 2. It could always be worse. Well I would love to shove those lemons up someone's butt. As for the last one a therapist told me this. We no longer see her. Really people everyone's situation could be worse. Give me a situation, and I could tell you something worse. Are we not allowed to feel pain, anger, sadness, and sometimes just plain hatred for the individual situation we have been given.
I hope writing this blog post gave you some release. The honesty of this post helped me.
I am praying for all of you.

Anonymous said...

Much of what you posted in this blog are things I struggled with during my two year journey with my father. I just couldn't put it into words. My family pretty much abandoned me and my mother. Our only real source of support was Hospice. I am so grateful that someone had the guts to post what you did. It speaks so much about the feelings of abandonment during a time of REAL struggle and heartache. You inspired me to write how I felt.. left... alone. How i STILL feel! He lost his battle against Cancer on January 17, 2012. I've been struggling with my fathers death, trying to pick up the pieces of my life. Trying to care for my broken spirit and heart. Trying to do it ALONE! May those in your life wake up and surround you with love so you dont have to sit her like me, finding an ounce of support through a machine. You and your son deserve no less!

Anonymous said...

You need to tell people what you need. What do you need from those around you that simply have never faced this and don't know what to do or how to help. I don't know you. I just found this blog and I don't know what you need. I will pray for you, your son and your family. May the lord bless you and comfort you.