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.

Wednesday, March 29, 2017

A Look Back at 2014 - February

 My sweet little Valentine.

I always try to go to the kids' holiday parties.  Even though Valentine's day is a rough one at our house because it was the last holiday we spent with Oliver, I try to do the best I can to continue to make memories.  Some years are harder than others.  I went to Eden's 5th grade class party and of course did my best to embarrass her, as you can see by her hiding behind a chair while I was dancing to the video game "Just Dance" with the rest of her class.  Hey... I do what I can!

 I had home schooled Jaren for several months because he and Eden were both at two different elementary schools.  They both got out at the same time and with busing being too expensive, I thought I try my hand at teaching him at home.  Well, with just having a new baby and some depression issues, I put him back in school with the help of my in-laws taking him and picking him up from school.  They are such a huge help with the kids!  Jaren had just started going back to school and had fun at his Valentine's day party.  I love seeing him happy and smiling.  
(Four years later - he still wants me to home school him.  I know he likes to have one-on-one time with me.  I miss teaching him myself, but know that it's too much for me right now.)  We still do arts and crafts together, though, which I love because I always wanted to be an art teacher.

Every year we have a family Valentine's day dinner and invite family and friends over to share our meal with us.  We started this tradition when Eden was about 18 months old and have done it every year since.  It was the last holiday tradition we were able to do with Oliver up at the hospice house.  It was always one of Oliver's favorite family traditions.

 We had a bit of an issue with our breadsticks catching on fire from a wild candle flame... yeah...
 We always have fettuccine alfredo, salad and breadsticks for dinner.

 Ollie's 2nd Angelversary
I always get sad when there is snow on the ground because he had wanted to see snow again before he passed, but it didn't.  We didn't even get a white Christmas.  We used red food coloring to spray a heart in the snow for him and gave him some yellow tulips which were one of his funeral flowers.  We miss you so much, sweet boy!
 This picture reminds me so much of Oliver for some reason.  He looks a tad confused...

 He's too stinking cute!  Look at those little feet!!


 The kids just love going to Dance Marathon!  Sometimes it's hard for me to go because it feels like a celebration and I don't feeling like celebrating because Oliver wasn't a survivor and his death date is so close to Dance Marathon every year.  The first year they held it, we buried Oliver on Monday, and on Saturday we spoke at the event.  I couldn't bring myself to go for that part, but came later.  Anyways, each year is a challenge for me to go, but the kids enjoy it so I really try to make an effort to be there for them.  They always have a family room filled with refreshments and fun activities for the kids to do.  Our family representative this year, was Jodi, who actually got a chance to meet Oliver at his mini DM before he passed away.  She is in the bacon outfit!  At the top of each hour the dancers have a theme, which is really fun to see throughout the day.

 In the main ballroom during the day there are lots of games set up and this year there were a few inflatables.  The kids spent hours in this room jousting with each other and shooting some hoops.

Some of the dancers donated their hair during the event.  Jodi, our rep, is wearing her green Team Ollie t-shirt.  I just loved her!  Woody is a friend that we met on Oliver's journey.  His son is a survivor of rhabdomyosarcoma.  He helped us with fundraisers and organizing some fun events for Oliver.  There was also a bit of karaoke which I hope no one has video evidence of!
We sang "Love Shack"!

 In the main ballroom hanging out, playing games and meeting some dancers.  They are all so sweet with the kids and take time to play with them.

  These were some of the ways they remembered our kids that have passed away.  They have a bed sheet decorated with their name and something that they enjoyed.  The balloons were in the family room and there were lots of places to write down why they dance and who they were remembering and honoring.  They had an area with candles to 'light' and place next to a card to honor a child and they also had shoeboxes put out for dancers to write a note for the family members of the kids that have passed.  I also got my sign from Oliver near a drinking fountain of a heart shaped scrap of paper on the floor.

Power hour is the last hour of dancing before the dancers can finally sit down and before the big reveal of how much they raised in the past year for the Children's Miracle Network.  They take down the inflatables and games and move the dancing into the main ballroom.  The kids had fun dancing with some of the dancers and playing in the lobby with some balloons.  They ended up raising, $176, 498.03 in their third year!  Thank you guys for all that you do!
You are amazing!!!