Packing & Moving

I am on a few Facebook support groups with other DIPG parents.  Many people write asking questions about how and when everyone packed up their child's belongings after they passed away as well as if they moved homes following their deaths.  The responses from the families varied.  Some people packed away their belongings soon after their child's death while others still have theirs left as they were on the day their children passed away.  There is no right or wrong way to do things.  There is no timeline that we must follow.  Each of our lives and circumstances differ so much even though we all feel similar pain and grief.  Do what you need to do, when you feel like you need to do it. 


PACKING AWAY HIS ROOM
We lived in a small home and had four children, including Oliver.  Oliver shared a room with his younger sister, Eden, at the time.  A few months before he passed away we painted the room to look like something out of Harry Potter.  Unfortunately he was placed on hospice shortly after and slept out in the living room and wasn't able to truly enjoy it.  After Ollie passed we waited a little while before we went through his things, maybe a month or two.  He had two younger brothers that would grow into his clothes.  We saved all of his t-shirts to make a t-shirt quilt out of (still in the midst of making it...).  Sometimes people make stuffed animals out of clothing, which I've always wanted to do for the kids, but haven't.  A few toys and stuffed animals we picked out to give to his best friends.  Most of his toys his brothers still play with.  I saved a few things of his for myself, like his special Harry Potter wand and a few other small odds and ends of his.  We did this fairly early on.  I threw away his medicine immediately as it was a trigger for me.  Some families are able to keep their child's room exactly the way it was for years, however since it was now Eden's room, we wanted to make it her own.  I can't remember how long it took us to paint the room in new bright colors for Eden.  It seems like it was just a blur of years following his death with my own grief and depression.  My brother painted it for us, as I knew it would have been too difficult for me to paint.  So many things trigger emotions now. 


MOVING TO A NEW HOME
We moved almost a year ago to a new house.  I had been so worried about moving and leaving Oliver's childhood home.  I wondered if I would forget him more if I moved to a new home where he'd never lived.  On the flip side I didn't want memories that were made there to be a trigger either.  I didn't want to move and then realize that I hated it in the new house and couldn't move back.  However, a bullying issue had gotten to the point where I had to think of the kids and put my worries and fear about Oliver aside.  I knew that he would be with us no matter where we moved.  It was a whirlwind move.  The last bullying issue happened the Monday before Christmas break and we found a house during that break.  We wanted to get out of the town and into a new school district so we moved to a smaller town.  When we went to take a look at the house that caught our eye, we loved it.  We loved that it was in a small town and in a small quiet area.  It was just the perfect fit for our family.  When Ed came back to look at the house a second time with the kids, our daughter looked into what would be her room and saw that they had two cribs in there.  She looked on the wall and saw two framed little baby footprints.  One of the babies names was... Oliver.  He knew my fears and worries about him not being there and he showed us a sign.  We knew it was where we needed to be.  We prayed about it, moved forward with it and everything fell into place.  We closed on the house on Valentine's Day and were moved in later that month.  I think the journey in and of itself is rocky.  Emotions from grief are up and down no matter where you decide to sleep at night.  You can't get away from them.  We have to learn how to deal with all those emotions that will inevitably roll over us.  All I know is that your child will be with you no matter where you are.  I know he's here with us.  I haven't had visions or many dreams of him, but I believe in the signs that he sends me.  I do feel like it was the right decision for our family even though it came with some negatives.  As parents, Ed and I had to make the choice to do what was best for the family as a whole.  I believe that Oliver is wherever we are. 

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.

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.

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 ENEMY SERIES (Click here)

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