Tuesday, September 18, 2012

Grieving... I hate grieving...

"The BIGGEST thing a cancer parent NEEDS is a friend to talk to, cry with, and even laugh with. I really missed that during Oliver's battle. It was an extremely lonely time. I know many people have said that they didn't want to infringe on family time... but we NEED a break and we NEED to feel that people actually care. It is something that I am healing from... not only the grief from Oliver's death, but the lack of supportive friends that were HERE for me. I'm still angry and sad about it, but I hope that I can inch my way toward forgiveness and let people back into my life. It's still fresh in my mind, so be patient with me..."

I posted this to my facebook page a few days ago.  (fyi -- I'm deleting my pages because it just isn't good for me.  I'm going to just focus on the blog and my support groups from now on.)  I am grateful for the things people did for us during Oliver's illness.  I may not seem grateful for it right now because my anger has overshadowed so much, especially in the last few days.  Most of the things were done right at the beginning of Oliver's illness and near the end.  I felt kind of lost in the middle.  I know that others can't read my mind and if they haven't lived through it, they won't know how to help.  I was better near the end asking for help which was horribly difficult for me to do, but I was grateful for the help with babysitting, cleaning and meals so that I could spend the final days and weeks getting time in with Oliver.  The biggest thing I needed was friends to talk to.  I get excuse after excuse as to why people weren't around which makes me sad.  Maybe I can't see things clearly because of where I am in my grieving journey.  I was angry and sad throughout the last 2 1/2 years.  I still am at times.  SHOULD I be angry and sad?  I don't know... but I was.  Do I WANT to be angry and sad?  No.  The fact is... I felt that I was alone... I WANT to forgive... I WANT to get back into the world, but it is SO difficult right now.  I know that my view of things may be slanted.  That comes with struggling with a mental illness every day, but I also know that the feelings I have had are common among parents that have children battling cancer or that have passed from cancer.  I wish I would have been more vocal about finding friends to talk with, but at the time I felt like I didn't have the energy to reach out.  It was just one more thing on the pile of things to do.  When you have a child with cancer, your whole entire world is turned upside down.  Nothing else seems to matter, but getting your child healthy... and in our case... coming to terms with the fact that he will most likely not survive and trying to pack a lifetime into a few months.  

So how is my life now?  Honestly...

- I can't seem to get into a sleep routine and have just started taking a sleep aid again which makes me feel groggy ALL the time.  I haven't had a good sleep routine in the past 3 years and it is really taking its toll on me.  I'm up when everyone else in the world is asleep and asleep when everyone else is awake.  Not good for a social life... although it is difficult to even leave my house.

- I HATE leaving my house because I just don't want to be around people.  I don't like people much anymore.  I don't have patience for people anymore.  I don't want to get angry and snap at someone.  I don't want to hear stupid trivial crap that happens in peoples lives.  I don't want to break down and start bawling because something makes me think of Oliver.

- I feel like I can't be a part of the outside world because it feels like no one understands.

- Trying to raise awareness for childhood cancer is very difficult.  It just seems like people think it's 'too sad' and continue to live their lives in ignorant bliss.  Sometimes I don't know why I keep trying because it's like reopening the wound every time I talk about it... but people act like they just don't want to hear about it.

- I can't take care of my 2 year old because I just can't handle him right now so that loads up the pile of guilt on top of everything else.  Just getting out of bed every day is a chore.  I'm just getting to the point where I'm starting to cook food again instead of just eating cereal and sandwiches... well... just a slice of plain bread.  When you are grieving and depressed you just don't care.  NOTHING matters. 

- I get flashbacks of Oliver's final weeks and days.  It's a living nightmare that just won't end.  Watching your child's health decline and finally pass away is something I wouldn't wish on my worst enemy.  I've had to see my child... dead.  Do you think you would be the same after that?!? 

- I get panic attacks and feel like I'm going to vomit.  I feel like my head is going to explode and my heart starts to race.  You truly feel like you are going to die.  I just feel like I'm popping pills to stay alive right now.

- My mental illness is really rearing its ugly head with all of the stress that I've been under.  It was almost too much to bear BEFORE Ollie was diagnosed.  I honestly don't know how I am still alive.  I think I'm just numbed up most of the time... which isn't good either.

- People don't have patience for people that are grieving.  I feel like I can't be angry and mourn because my grief makes other people feel uncomfortable.  This society really doesn't understand death and grieving.  I will NEVER 'get over it'.  I may live another 50 years without my son... a part of me that is gone.  I seriously don't know how I am going to do this, but I really don't have a healthy alternative.

So... that is how I have been doing.  I have been trying to get back to some sort of normal, but it is slow going.  I've been trying to focus on other things so that I don't dwell on the fact that part of my family is gone, although Oliver is in EVERYTHING I see and hear.  I'm starting to make a t-shirt quilt for him from his old t-shirts and helping to get a bake sale fundraiser for children's cancer up and running along with getting ready for the CureSearch Walk in Iowa City at the end of the month.  I've been trying to read more and get lost in the world make believe for a bit... if I can get my mind to cooperate and not wander back to Oliver and my life that is now a train wreck.  I can see where I WANT to be... and I HOPE to get there, but it will take a lot of work and patience on my part and those who continue to stick around.  I may just end up being more of a homebody than I used to be and I just need to be okay with that.  I have a wonderful husband and good kids that continue to make me laugh.  I honestly don't know what I would do without them.  Baby steps... I suppose.


Anonymous said...

I really think you need some inpatient help. You can just keep popping pills to drown out what happened and although he is gone you still have other kids to raise. Don't let them feel like they weren't as good as Oliver was and that they don't get to have a good mom. You need help. I can't imagine what you are going through and I'm so sorry for your loss but at some point we all have to pick ourselves up from the corner and make the people who have passed proud of us. I can tell you I'm in my early twenties and I've had a hard life. My dad passed when I was 16. I got pregnant at 18 I had a disabled child at 19 who probably doesn't have a long life expectancy. I had 6 people die in my family within 2 1/2 years no grandparents left have issues with one of my sisters, but I stil pick myself up from the corner and make them proud. I am now a nurse and make my son proud. You need to do the same. My Oliver and your other kids proud. Get help. I see way too many people in my job strung out on pills constantly. I wish the best for you.

Anonymous said...

you will be blessed for all that you have done and continue to do

Jennipher Woods-Mueller said...

Wow, you always have such a way with words. I have a 2 year old son, and in no way know how you're feeling but I'd like to be your friend. I've followed your/Oliver's story for awhile and was extremely hurt for you and your family. I may be half way across the nation, but I can be quite a good listener. Feel free to bend my ear anytime you need to. You're a good Momma bear and you should'nt feel guilt, even though that's perfectly normal. I pray that things will get better for you and that you can manage to cope in some way. I'm here if you ever need me.
Just a friend.

Anonymous said...

To the lady who posted first on this entry....until you have walked in this mother's shoes, you should stfu! Ignorance is bliss! You better hope you never find yourself facing the SAME circumstances. NOTHING can be compared to the loss of YOUR child. AND there is no right way or wrong way to grieve. Do us all a favor and do not come back to this blog again!!

summer Aiello said...

My heart hurts so much for you right now-I have NEVER experienced the loss of a child and I can't imagine telling anyone how they *should* be feeling? What a joke. I don't know you personally and have just stumbled upon Oliver's FB page and blog because a child I love dearly is dying from DIPG and I'm trying to find some shred of reason or hope to it all.
I'm so sorry you feel alone and angry and sad but you absolutely have every right to be. I have a 7 year old son and 3 year old daughter and the very thought of watching them slip away from me forever is crippling. I'm constantly amazed at all of you courageous parents of DIPG kids who still can even type these awesome blog posts, let alone function in the world.
Though you may not know or care, you inspire me. And my friend Ginger who is London's mother will probably for sure have these exact feelings after he is gone. I am going to point her here, to Oliver's blog to show her she isn't alone. Just like you are not.
Xo summer