Thursday, December 14, 2017

Unsolicited Advice

Lately it seems that I must have a flashing neon sign strapped to my chest because people just feel the need to come up and give me advice... without me asking for it.  Hence, why I have become more of a hermit since Oliver's death.  Nearly six years later... I am still hermit-like.  I say hermit-like because I go out more, however it is still really difficult to venture out of my safe zone (my own house) and the funny thing is that I really don't mind it now.  Some people are naturally homebodies.  I was not before Oliver passed away, but now I am out of necessity for my own mental health and I've come to embrace it.

The person who knows the most about how I am dealing with things in my life, would most likely be me or my husband or maybe even one of my best friends.  However, it seems that other people, who I really don't know all that well, seem to know everything that I need to be doing and everything I am doing wrong.

So, my son, Phineas, just turned 8 which is an important birthday in our family and church because that is the age that kids can make the decision to become a member of our church.  They choose to be baptized.  There is a program where people speak, songs are sung, prayers are spoken and so forth.  Finn asked me if I would give a talk or say a prayer.  Now, I have been struggling with my faith for many years now.  Since Oliver was diagnosed, it's been very difficult wrapping my mind around things.  I truly believe that Oliver exists and that he is near us in spirit and knows what we are doing.  I believe that I will see him again someday.  I struggle with certain doctrine in the church and just an overall feeling of confusion about things.  It's very difficult to explain.  Anyways... at this point in my life, I am struggling, and when he asked me to participate in his baptismal program, I was hesitant.  I didn't want to be a hypocrite.  I didn't want to start crying.  I didn't want to feel the way that I was feeling.  I didn't want to be judged ("Why is she speaking about this when she doesn't even practice what she preaches?").  But then I thought... this is about him and his special day so I got over my fear and helped with the program by saying the prayer.  I want him to remember that his mom cared about his day and his decision even when I was doubting mine.  I always want to support my kids even when I feel like I can't.  

So, it was difficult for me to be there, but I made sure I was there and was present.  It was a nice baptism and he was happy.  Everyone that spoke did a great job.  We had cookies afterwards and were talking with a few people.  Then, someone came up to me and we started chatting.  This person has always been nice and I know that she meant well in everything she said, at least I hope she did, however it felt very critical.  We went down the hall for more privacy and we started talking.  Of course I was emotional that day for many reasons.  One being my own spiritual shortcomings and doubts.  Another reason I was emotional was because I wondered where Oliver was -- if he was there for Finn's special day.  When I think of Oliver missing out being here on earth for things like this it's hard.  Yes, it's great that he's there on the other side, but it is still difficult when he's not here.  So, I was already emotionally exhausted and wasn't ready to hear certain things that were said to me.  So this person, in a nice way, said that she had felt that Finn was going to do great things in life, but only if I - oh, how did she say it? - pretty much was a better person.  I was told that I was stubborn and that I needed to put my pride in my back pocket.  Now... I don't know if those two things were in reference to the fact that I hadn't been going to church for many years or what, but that is what I got out of that.  Then, the thing that hurt me the most was when she said, "You are NOT coping with losing your son".  Um... WHAT?!  Then of course it was followed by the old you have more children you need to be a mother to and that I need to see a counselor.  I was actually thinking a few things in my head while she was talking:

#1 - "This is EXACTLY the reason I stay home and am not around people."
#2 - "Wow... I feel like when I come to church people will judge me.  And... YUP... I am being judged right now.  How did I know this was going to freaking happen?!"  (interestingly enough, people ALWAYS say, "No one will judge you!" -- FALSE!)
#3 - "I don't recall asking for advice."
#4 - "This person doesn't have stewardship over me so why do they have visions of what I should be doing... since I'm hindering the greatness of my son and not being a good mother."
#5 - "I need to get the hell out of here before I start swearing at this person in the church building and then later I'll feel bad about putting her in her place."

So, this person had a grandchild that passed away, so I guess she knows what a mother feels like... also what I feel like.  I am not her.  I am not her daughter, who I have no clue how she is 'coping'.  We all cope differently.  I am ME.  I wish people would just mind their freaking business.  If you are that concerned... pray for me.  That's it.  Because you may think you are helping when in fact it makes me not want to come to church because my fear of being judged was just proven correct.  HOWEVER -- I KNOW THAT YOU SHOULD GO TO CHURCH BECAUSE OF THE DOCTRINE, NOT PEOPLE.  But... it makes it difficult to go to church when you have doubts about the doctrine AND the people judge you.

I will be the first to admit that learning how to cope after your child has died, is not that easy, in fact... it is nearly impossible.  Top that off with my own mental health issues... and I'm lucky to get out of bed every day.  Now... NO ONE, but myself, my husband and my kids, know what day to day life is like in our household.  NO ONE, but myself knows how I feel and what goes through my mind on a daily basis.  Therefore, I don't take kindly to people thinking they know what I should be doing -- especially when I didn't reach out and ask for advice.  I do have a bad habit of bearing my soul to people that aren't sensitive enough to handle it.  Thus, why my trust issues have skyrocketed.  I stay away from people because I don't want to divulge too much of how I'm feeling because that opens the door for judgement.  I feel like I am trying my best.  I've said it before and I will say it again.  After the death of your child -- your definition of success changes.  Maybe BEFORE Oliver died, success was being out of bed and dressed every day, cleaning the house, cooking dinner for everyone and going to every appointment and activity that my family was in, etc.  AFTER Oliver died, success for me means getting out of bed... showering.  Some days, I clean the house a little depending on my level of pain.  Some days I am up and energized and happy and joking with the kids.  Most days I smile and laugh and am present, but those days still have a little dark cloud over them.  Some days are spent in bed all day.  Thus is the nature of grief... of losing a child that shared my body.  A child I had for 10 years.  Thus is the nature of mental illness.  They are intertwined and it is one of my worst trials.  Mental illness comes with self doubt and self loathing, I don't need to hear how I should be doing things because that tells me that I'm failing at it.  Every single day, I endure.  It may look different every day.  It may not look like enduring to someone else looking in, but it is my journey and I feel like I'm doing pretty good.  I know how I would like to be, but that doesn't mean that it is even possible.  I know things I need to work on, I don't need someone telling me what THEY THINK I need to work on.  Again, I know I could be better, but as of now I am not 6 feet under, so that is a success in my book.

Yes, I'm working on forgiveness.  I'm trying to see things from her perspective and trying to see that 'she meant well' because she is a nice person.  It is just so frustrating getting advice and feeling judged when I already feel crappy enough.  I'm just trying to get through the day without climbing back into bed.  UGH.  Life sucks sometimes.  Life is hard.  I was going to reread this and tweak it, but you know... this is how I felt when it happened.  This may be how it feels to other grieving mothers, so I won't change it.  

To all the grieving mothers out there reading this.  I'm sorry.  I'm sorry you are on this journey.  I'm sorry there are things out there that make this journey even more difficult than it has to be.  A fellow DIPG mom has been struggling with people saying hurtful things about how she caused her child's cancer.  I just don't understand how people feel it is their right to judge and criticize a grieving parent.  We are judged and criticized for everything and people think they have a right to insert their two cents.  We are criticized for causing our child's cancer, for what we divulge to our kids or don't divulge to our kids.  We are criticized for the treatments they have or don't have.  We are criticized for what we do with donations that are given to the children, for taking them on trips and making memories.  We are criticized for being too honest about our feelings during their treatment and after their deaths.  We are criticized for not being there for our other kids, during and after.  We are criticized for stopping treatment and accepting the fate of our child.  We are criticized for not praying enough.  We are criticized for how we choose to tell them goodbye.  We are criticized for not coping well after they have passed.  We are criticized for being on medication.  We are criticized for not being the same person we were before our child got cancer and died.  No matter what we do............ we are criticized for it.  It's no freaking wonder why we don't want to leave our homes, why we become hermits.  I KNOW I'm not the only one going through this, so I just want to say that I know you are doing your best.  It may not be what others think should be your best, but you are striving to be better and that is all we can do.  You are loved.  Your child is loved.  I need to repeat those same sentiments to myself to continue to endure because I know it is not the first time someone said something critical and it won't be the last.

Saturday, October 14, 2017

Judgement and Regrets

A few days ago a friend told me she was talking to a woman at a benefit for a young woman in our area with cancer.  She was talking to the mother of the girl and this other woman.  Somehow this other woman started talking about a little boy named Oliver that lived in the area and then started talking about how she disagreed with my decisions.  I asked my friend what else was said, but she couldn't remember everything.  She pretty much shut the lady down right away and told her that she knew us personally and that she wasn't in our situation.

So many things sprung into my mind.  First, I was like... WHAT?  What decisions is this woman referring to?  The fact that we opted out of chemo?  The fact that we didn't take him to St. Jude? That we didn't take him to see Dr. Burzinski in Texas?  The fact that we were honest with him about his condition and the most likely outcome?  Like... what the hell is this nut referring to?  Second, I was thinking... wow... this lady has some nerve judging me for the decisions we made in regards to our son's health.  Third, people are STILL judging us 5 1/2 years AFTER Oliver died?!  What the freak!!

I have no regrets with regards to Oliver's health care plan.  I think as parents of terminally ill children, we are constantly going back and forth in our minds wondering if our choices were the best ones we could have made, especially if they passed away. We don't need other people on the sidelines chiming in on what they would have done in the situation.  Well... they aren't in my situation, and even if they had a terminally ill child, they STILL aren't in my situation.  Every single child, family and situation is different.  You never know how you will deal with something and what choices you would make until your life is suddenly thrown into chaos and uncertainty.  We don't have a crystal ball to tell us the correct choices to make.  We have to be okay with the choices that we ultimately make and not beat ourselves up about it. 

So... here are a few things I just wanted to put out there...

#1 - With Oliver's type of cancer, chemo has proven time and time again that it does not help.  It only decreases the quality of life.  So, if he will most likely pass away, why would we make his last few months miserable?  If there were viable options, you bet we'd move heaven and earth to get him the help he needed, but there wasn't and sadly, still isn't.

#2 - St. Jude does not take everyone.  They have to have a trial that fits with your child's diagnosis and the child has to qualify for it.  I know countless children that have been turned away.  Plus, even if there was a trial... it's still a trial.  Grasping for straws.  If he was most likely going to pass away, why would we separate our family for the last months of his life.  We focused on making memories together.

#3 - Dr. Burzinski may be able to help other people, but in nearly every case with DIPG, nothing helps.  Also, keep in mind that insurance does not pay for the $300,000 treatment.  So, you'd most likely be left without a child AND possibly bankrupt.  We have the whole family to think about.  Again, if there was a viable option - if it showed that it helped DIPG cases then yes... we would have gladly given everything we had to save him.

#4 - Every family is different with regards to what they feel about death and an afterlife.  We chose early on to be up front and honest with Oliver about his diagnosis and that he would most likely pass away.  We waited a while to tell him the last part.  Who wants to tell a child that he is going to die?  We wanted him to know that we still held out hope and that anything was possible, but that it was ultimately in God's hands.  We wanted to be open with him about the afterlife.  That people would be there that loved him and that he would not be alone.  We didn't want him to be afraid.  We wanted to keep things open so that if he was scared we could talk with him.  I always wanted him to feel safe and be able to be honest with us about how he was feeling.  I'm so glad we did.

Those are just a few of the big choices that we made that may not be the choices most people would have made and that's okay.  We can't judge what others choose to do in such situations, especially when we don't have all the facts or share the same beliefs and emotions.  It was all done in love and faith.  LOVE for my sweet boy and concern for his total well being as well as for the whole family.  We were and are all still in this together.  FAITH that all things happen in Heavenly Father's time and FAITH that we will see Oliver again someday.

I guess my parting advice would be --- Don't judge someone based on what you *think* you would do in their situation.  Don't judge someone based on what you *did* do in a similar situation.  The family has enough on their plate just waking up every day and dealing with what life has thrown at them.  Each situation is different.  Just be kind and keep your opinions to yourself.

Thursday, August 31, 2017

Book - The Enemy Series and the name signs.....

Two years ago Ed bought me a book series for my birthday which had 7 books in the series.  The Enemy Series, written by Charlie Higson, is a teen zombie story set over in England.  I know it sounds lame, but it was actually really well written and kept my interest throughout the entire series.  He bought a set of 6 because the 7th one wasn't out yet and I was itching to buy it right when it came out.  It was worth the wait!


The thing that got me was that eight pages into the very first book, one of the main characters was named... OLLIE.  I always love seeing his name in books.  I'm reading Harry Potter to the boys every night before bed and have always loved the fact that one of the Gryffindor characters is named Oliver (Wood).  I just finished a book called The Broken Lands that briefly talks about a friend of the main character named, Oliver.

So the first book has an OLLIE.  I sit down to read the second book in the series and another main character is named ED.  Umm... weird.  I jokingly thought to myself that I will flip out if the next book has another of my immediate family members names in it.  Sure enough, I couldn't believe when I read that another character's name was, FINN.  So after three books in and three family members names, I thought that the craziness would end.  Ummmmm... no.  The fifth book briefly mentioned that a girl named, STACEY (spelled differently than mine) was killed by the zombies.  I couldn't get over it!  I knew that Eden, Jaren and Thor wouldn't be in it, but I was wrong.  They mentioned THOR in the sixth book and EDEN in the seventh!!  Jaren, however, did not make any of the hundreds of pages in the series.  I just couldn't get over how crazy it was!

Anyways... if you are looking for a new book series that keeps you engaged the whole way through, look no further than, The Enemy Series!

The Enemy
The Dead
The Fear
The Sacrifice
The Fallen
The Hunted
The End

Wednesday, August 30, 2017

New School Year

This is always a difficult time of year for me, but this year has been especially difficult.  Oliver would have been a junior in high school this year.  Eden, his sister, is a freshman and SHOULD have her older brother at school with her, telling her about the teachers and the crazy things that happen on a daily basis.  He should be showing her around to all of her classes and helping her with homework.  He would be 16 years old and with that comes many other things that should be happening at that age.  He would be driving.  He would be in his 3rd year of seminary, which is an early morning religion class they have every day before school.  He would be driving Eden to seminary this year and then to school.  He would hold the office of a priest in Young Men's at church.  He would be able to start dating.  Who would he be dating?  Someone from school?  Someone from church?  He'd be going to church youth activities and dances.  He would be working towards his Eagle Scout just like his dad.  He would be attending his junior prom this year.  He would have been a jock, I'm sure, as he was so athletic and loved sports.  He'd most likely be on the baseball team.  Who knows what else he'd be in, what else he'd be excelling at.  It's always tough to wonder what he would be doing, what he would look like.  He was always a head and shoulders shorter than everyone.  Would he have hit a growth spurt and be tall or would he have always been the short and stocky one?  How would his face have changed?  What would his voice sound like now?  Yeah... this year has been harder for me.  There have been tears shed this year... more tears than most.  But, we continue on.  I try to be excited for the other kids even though there is a part of my heart that will always be yearning for Ollie to be here as well. 

One other difficult thing I see a lot on facebook, mainly at this time of year is the comment, "I wish they'd stop growing up!"  I always have to fight back the urge to say, "At least they get to grow up!"  I know that they don't mean anything by it because they haven't lived this reality that their child will never grow up.  They won't get to go to prom, graduate from high school, or move to the dorms in college.  They won't get to serve a mission, get married or have kids.  They won't be able to do all those things that come with growing up.  I do understand how they feel, as I realize that I only have 4 more years with Eden in the house and the boys will be following shortly thereafter.  It is sad to think about them all leaving the house because that part of my life will be over.  I just hate that phrase people use.  It just gets under my skin.

We didn't do our annual Ice Cream for Breakfast this year, it was Ice Cream for an After School Snack.  Since Eden left so early in the morning, we decided to wait until we could eat all together.  We still had to do it in some form to honor and remember Ollie.  Eden is a freshman in high school and the boys are in 2nd and 4th grade this year.  I got a photo of them in the morning and there was a huge dragonfly behind them in the ivy that flew away as they got closer.  It flew right past my face and next to my ear and then flew into the front yard.  I thought he was gone, but then flew right back to the same spot.  I'm sure it was a sign from Oliver that he was there with them, wishing for them to have a good year at school.  A reminder that he is always with them.  I also saw an Ollie heart in a spider web after the boys got home from school.  He is everywhere.