2012 December update

It's been a long while since I've posted anything on here.  Most days go by and I try to keep myself busy with things... having 3 kids still here is a lot of work and helps to keep me numb.  I know that sounds horrible, but at times it's the only way to get through the day.  I do find joy in each day.  The kids make me laugh and we still talk about Oliver.  I want them to remember him.  It's hard because you don't want to make an altar to a child that has passed, but you also don't want your kids to forget him.  I have photos up of him because that is the only way I see him now.  He doesn't come through the front door after school anymore or walk in the kitchen and ask what we are having for dinner.  His pictures are a visual reminder for me and everyone that enters my home that he lived and that he is still here in spirit.

The other day Ed and I went to see the movie 'Lincoln' in the theater and Abe and Mary were arguing over the death of one of their sons and talking about grief.  Abraham said that he wanted to crawl into the ground with his son's casket.  I just started sobbing.  I knew that feeling too well and it was only 9 months since his death.  Too soon... still so raw.  I just couldn't stop crying.  You just never know when it's going to hit.

Oliver keeps sending me signs in the shape of hearts.  Some may just laugh them away, but I truly think they are from him and not just here by accident.  It helps me, so who cares how it got there... I suppose.  There have been more kids dying each day from DIPG and it makes me sick to my stomach.  I decorated Ollie's grave for Halloween and now Christmas and it makes me sick to think that most people are out buying their child a costume or a gift and I'm picking out things to take to my son's grave.  I don't think it will ever feel right.

I need to start updating more.  I'm still playing catchup with tons of pictures... so keep checking back.
Thank you for still thinking of us and praying for us.  I know Ollie is around, although I physically can't see or feel him.  He's still here watching over us.

"Be Still" - The Killers

BE STILL - The Killers

"Be still
And go on to bed
Nobody knows what lies ahead
And life is short
To say the least
We're in the belly of the beast

Be still
Wild and young
Long may your innocence reign
Like shells on the shore
And may your limits be unknown
And may your efforts be your own
If you ever feel you can't take it anymore

Don't break character
You've got a lot of heart
Is this real or just a dream?
Rise up like the sun
Labor till the work is done

Be still
One day you'll leave
Fearlessness on your sleeve
When you've come back, tell me what did you see
What did you see
Was there something out there for me? 

Be still
Close your eyes
Soon enough you'll be on your own
Steady and straight
And if they drag you through the mud
It doesn't change what's in your blood
(Over chains)
When they knock you down

Don't break character
You've got a lot of heart
Is this real or just a dream?
Be still
Be still
Be still
Be still

Over rock and chain
Over sunset plain
Over trap and snare
When you're in too deep
In your wildest dream
In your made up scheme
When they knock you down
When they knock you down

Don't break character
You've got sooooo much heart
Is this real or just a dream?
Oh Rise up like the sun
And labor till the work is done
Rise up like the sun
Labor till the work is... 


Rise up like the sun
And labor till the work is done"

**Thought of Oliver the entire song, wiping away tears...  especially the bold and italicized bits.  Is this real or just a dream???  More like a nightmare for me.  I still can't believe he is truly gone.  I can't believe it.  No matter what happened to him, he continued to be a kid of character... wearing fearlessness on HIS sleeve when it was HIS time to leave.  I'm bawling now just typing this right now. 

Just got a comment on my blog that is a complete example of what NOT to say to me...  WOW...  seriously....  maybe I'll disable comments from now on and focus on this being just a journal people can peek in at... because certain 'comments' do not help... they actually seem to make things worse for me. 

Yes... I KNOW I have other children and I am trying the best I can right now.  If that means that my 2 year old goes to his grandparents house in the evenings... so be it.  It is a better choice than for him to stay here right now because I can't handle him 24/7 right now.   I see a psychiatrist and we are checking out all of my medication options.  I'm popping pills to STAY alive... meaning if I don't take my meds... I will become MORE depressed and suicidal.  I started taking my sleeping aid again to help try and get into a routine.

 I AM here for my kids when they get home from school.  We cook together, read together, do puzzles and crafts together.  Go to the park.  Yes... some days I just lay on the couch... or read in bed while they play together in the living room watching TV.  Some days I feel like I just can't give it my all.  I'm GRIEVING... and it's OK.  They ARE getting FOOD.  They ARE being CLOTHED.  They ARE being BATHED.  They ARE where they need to be.  They ARE getting mommy time doing CRAFTS and READING BOOKS.  They ARE getting HUGS and KISSES and hear "I LOVE YOU" on a daily basis.  That is more than MOST 'normal' families.... And yes, they do sometimes have to find something to do when mom needs to go in her room and bawl for a while.  They are 5 and 9... they can handle that for 30 minutes.  They get in trouble for not doing chores and for being disobedient.  They do their homework.  It's not like my children are sitting naked in their rooms with nothing to eat.  I'm doing THE BEST I CAN right now and honestly I think I'm doing a pretty good damn job seeing as who I am and what I've recently been through.  NO TWO PEOPLE WILL EVER LIVE LIFE THE SAME WAY... so don't judge my way of grieving because it doesn't mirror YOUR way of grieving. 

I am human.  I WILL CRY and BAWL and RANT and RAVE and SWEAR during the bad times, but I do have good times as well... actually more good times than bad.  I mean I think of Oliver on a daily basis, but I'm not sobbing all day long.  I KNOW Oliver is proud of me, NO MATTER WHAT.  He is in a place where he most likely understands human emotions in a way none of us on earth can.  Just because I'm sad and depressed doesn't mean he's not proud of me.  I think I make him proud when I choose to not overdose on my medications... when I choose to deep breathe and count to ten before doing something drastic.  I think I make him proud when I say his name and talk about his story with other people.  I think I make him proud when we talk about him with his siblings, like he's still alive and well within our family.  We still joke around with Oliver even though we can't see him.  I think he's proud of me when I get out of bed every day.  I think he's proud of me when I kneel down and pray after months of not praying.  I think he's proud of me because I KEEP TRYING MY HARDEST to be better... for me... for my family and for him.  I know he's not shaking his head in disgust when I cry and miss him... it probably makes him sad and want to help comfort me... but I don't think that by doing that he's less proud of me. 

The bottom line is.... I'm doing the best that I can for me and my family right now.... and for the people looking in... you may have your own idea of what YOU would do in my situation, but you are not ME.... so you can leave your advice inside your own head until it is asked for.  Otherwise... zip the lip.

---from a grieving momma trying to find my new normal in a world of people that haven't got a clue...

 

 

THIS Sunday we will be participating in the CureSearch Walk in Iowa City, Iowa.  The proceeds will go toward further research for pediatric cancers.  I'm SOOOOO HAPPY to be able to take part in a walk where the donations go toward this needy group of kids.  Childhood cancers are grossly UNDERFUNDED and something NEEDS to be done about it.  I'm excited to honor Oliver and Jadyn, a little boy who passed from medulloblastoma.  His mom and I became acquainted shortly following Ollie's diagnosis in 2009 and we are adamant about getting our fair share of funding for our babies... for YOUR babies.  It's just not right that they keep getting the short end of the stick in the funding area.... even in the awareness area.  I RARELY saw or heard anything in the media about pediatric cancers, but I've ALREADY seen several things about breast cancer and it's not even October yet!!!  Yes... it gets depressing to know that the children are so easily overlooked.  It truly makes me sick.

However... I am doing what I can do and I helped with a bake/craft sale last weekend in front of our local Hobby Lobby craft store which raised nearly $1200 for The Cure Starts Now Foundation, which focuses their research on pediatric brain tumors, especially DIPG, which Oliver had.  I want to thank Carrie and Nikki for doing SO MUCH on Saturday and of course several weeks beforehand as well as all those who donated baked goods and crafty artsy stuff.  Thank you to those that stopped by to purchase some of these goodies as well.  We couldn't have done it without any of you, so THANK YOU!!!

THIS SUNDAY, we are going to be participating in the CureSearch Walk down in I.C.  We've made some golden t-shirts that say Childhood Cancer Awareness on the front and have a list of facts on the back so people can be made aware when they are standing behind you in line at the grocery store.  We've also made a banner with Jadyn and Oliver's faces on them and we will add several childhood cancer warrior's names to it... THEY are truly why we walk... and why we will ALWAYS walk until there is a cure for them.  I just pray for good weather and maybe a sign from Oliver... as always...

If you would like to read about CureSearch, sign up to walk with us, or donate, check out my personal fundraising page.  We would love to bring our total higher and higher for these kids!!!  Thank you so much for those that have already donated.  My birthday was Wednesday and so I asked for my 34th birthday... a donation of $34 to go to CureSearch.... or AT LEAST $10 in memory of Ollie's 10 short years on earth since he can no longer walk in this event.  Anything is better than nothing... even $5 if you have it.  Think of where it is going and who it will be helping.  It may be helping your child... your grandchild that hasn't been diagnosed yet.  That is why we keep fighting and raising awareness... for YOUR loved ones as well as OURS.

THANK YOU SO MUCH!!!
Love,  Stacy (Ollie's momma)

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.

"What is NORMAL?" - Grieving Mothers

What is normal?

Normal is having tears waiting behind every smile because my son is missing from all the important events in our family’s life.

Normal is trying to decide what to take to put on his grave that he would have loved.

Normal is feeling like you can’t sit another minute without getting up and screaming, because you just don’t like to sit through anything anymore.

Normal is not sleeping very well because a thousand what ifs & why didn’t I’s go through your head constantly.

Normal is talking of my child’s death and trying to keep from crying each time I say "died" because I still don't believe it. And yet realizing it has become a part of my “normal.”

Normal is thinking of first year without him coming up with the difficult task of how to honor my son's memory and his birthday and how am I going to survive these days. It's trying to find a way to get through these occasions without him.

Normal is my heart warming and yet sinking at the sight of something special my son loved. Thinking how he would have loved it, but how he is not here to enjoy it.

Normal is having some people afraid to mention my son, “Oliver”.

Normal is making sure that others remember him.

Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, and months after the initial shock, the grieving gets worse, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. Nothing compares.
NOTHING.
Even if your child is alive and away in the remotest part of the earth away from you - it doesn’t compare.

Losing a parent is horrible, but having to bury your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because you know your mental health depends on it.

Normal is realizing you do cry every day and night just so you won’t cry when your at work or doing every day tasks.

Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of their child.

Normal is sitting at the computer crying, sharing how I feel with Friends hoping they will understand how I feel everyday without my son .

Normal is listening to people make excuses why they did not come and see me or how they could not make it at the time of the funeral and me thinking "it doesn't matter anymore".

I know my son is in “a better place,” but hearing people trying to think up reasons as to why it was my son that was taken from this earth, makes absolutely no sense to this grieving mother.

Normal is being too tired to care if you paid the bills, cleaned the house, did the laundry or if there is any food.

Normal is wondering this time whether I’m going to say I have four children or three children, because explaining that my son has died to someone is the hardest thing for me to say.

Normal is asking God why he took your child’s life instead of mine and asking if there even is a God.

Normal is knowing in your heart you will never get over this loss of my child, not in a day nor a million years.

Normal is having therapists agree with you that you will never “really” get over the pain and that there is nothing they can do to help you because they know if you say "only bringing back my son back from the dead could possibly make me better.” But saying this will make you look insane.

Normal is learning to lie to everyone you run in to and telling them you are fine and okay when they ask “How are you” or say “You look good”. You lie because it makes others uncomfortable if you start crying. You’ve learned it’s easier to lie to them than to tell them the truth that you still feel empty and it’s probably never going to get any better — ever.

And last of all…
Normal is hiding all the things that have become “normal” for you to feel, so that everyone around you will think that you are “normal.”

 

 

( I found this on the Grieving Mothers facebook page and had to share it because it said so much of how I've been feeling.  I've changed a few things to make it more personal to me, mainly adding Oliver's name.)

I went to the dentist today and had to decide if I would tell the hygienist all my kids ages and then add that my oldest died, because I said, my son WAS 10.  It's such an awkward thing to bring up, but at least I can share a little bit about him... and yes... I cried.  I sure hope this gets easier over time..

FLASHBACK -- Day 7 FLORIDA - Give Kids the World Resort / Atlantic Ocean

Sunday, September 11, 2011Today we thought we would head over to Give Kids the World resort that we stayed at last year on Ollie's Make*A*Wish trip in April 2010. Since Jaren didn't go with us last year, we thought we would show him around and get some ice cream at the ice cream shop! It was one of the best places we visited and we were happy that they welcomed us back for the morning. Thank you to all the volunteers who so freely and lovingly give their time down there for our families to make memories.

Ollie helping Jaren play a little video game while we were in the main office getting name tags.

Amberville train station and the main office building

Mayor Clayton mosaic

Henri Landwirth the wonderful man who came up with the idea of the resort for Make*A*Wish kids and their families.

Some of the cute designs of the houses we stayed in last year.

Old Elmer

Mayor Clayton's house

The Ice Cream Palace - where we stopped in for some ice cream.  This is where we got the inspiration to start our ice cream for breakfast tradition on the first day of school.

The Castle of Miracles

Ollie's star is on the wall near the center of the photo.  It really takes your breath away to see so many stars.  They added another part since we were there for his Make*A*Wish trip.

The Star Tower is new since last year.

Eden getting close to being pushed into the fountain!

Today was the first time any of us (Me, Ed or the kids) had seen the Atlantic Ocean. We weren't able to come last year on Ollie's Make*A*Wish trip because Ollie had such bad motion sickness that we didn't want to make the drive and make him miserable. We traveled down to Melbourne, where my two cousins live and they drove us to the beach. I was so excited to go to finally see the ocean! I don't think Ollie wanted to go at first, but the being the mean mom I am, I made him go and knew he'd like it once he got there. We got there in the late afternoon and stayed until sunset when a storm was starting to roll in.

Ed and Oliver walking to the beach.

First steps in the ocean...

What a view!

Interesting jellyfish on the beach. Evidently Oliver was sitting near one and accidentally rolled over onto one. No harm done. Whew!

Building a sandcastle with Jaren and Uncle Chad.

I LOVE this picture of Ollie and Bear.

Beauty and the beach...

Grandma and Ollie

Ed and my cousin, Talen.

Gorgeous sunset.

I thought this was so odd how the clouds made such a stark contrast in the sky. 

We went to a restaurant, Grills Seafood Deck and Tiki Bar, that had a great view of the ocean.  We got to spend a little more time with my cousins, Brett and Talen which was nice.

My older brothers, Bryan and Chad

While we were eating dessert, Oliver was eating some chocolate cake and started to complain of his stomach hurting and then his throat getting itchy.  Ed took him to the bathroom and he came out a few minutes later with his shirt off, COVERED in hives.  He was red and blotchy and said they just itched horribly.  We knew we had to get to the ER as quickly as we could.  We followed my cousins and sped to the nearest hospital, checking on Oliver constantly, asking him how his breathing was and how his throat felt.  We got to the ER and I freaked out even more because of how much the nurse was panicking.  We gave him his Epi Pen for the first time and realized we should have given it to him MUCH sooner.  I was realllllllly scared at this point.  The nurse was running around yelling at everyone in such a panic that it really was freaking me out.  By the time we got into the room his hives were SO BAD they were raised and morphing into one HUGE hive on his back.  I mean his ENTIRE back was COVERED in a raised area of skin.  His chest, his arms, legs, neck, face was all blotchy and covered in hives.  His ears... all over his ears was swollen, even in the upper part where you wouldn't think it could even become swollen was as large and thick as his ear lobe.  It was SO SCARY.  The pictures were taken to show our doctor when we got back home how bad it was, but they were taken when things started to get better so you can't see how bad it was in the beginning.  Yeah... allergic reactions are NOT something to mess around with.  I think it may have been cross contamination with a pecan or some other nut.  I tried emailing and phoning the restaurant to get an ingredient list of the items he ate so I could figure out what exactly to have him tested for, but they never got back to me... nice, huh?

My sweet boy...

After a long night in the ER, driving back to the hotel to get some sleep before heading back home the next morning.  What a way to end our trip.