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!!!

Tuesday, March 28, 2017

A Look Back at 2014 - January

January is usually a pretty slow time of the year for us.  It's cold, we are winding down from the craziest time of the year and having a newborn, it's hard to go anywhere for fear of them getting sick.  

Sweet Thor with his darling dimple in his fuzzy elephant pj's.

 I love the look on his face...

Jare Bear standing on the bed in our undecorated room.  Somehow our bedroom is always the last room to get a coat of paint and curtains.  We moved into the house in 2004... yeah... about time I did something about that! (Four years later and it still looks the same!)

 "Pull My Finger..."

Sissy with her baby.

So innocent.  They grow up so fast!

A Look Back at 2013 - December

So November brought a new baby to celebrate as well as Eden's birthday.  Four days after Eden's birthday we celebrate Phineas' birthday.  This year was a bummer year for him as we had a newborn at home and didn't have much energy to make a cake and go all out.  Good thing he was four and was just as happy with a glazed donut with four candles as he would have been a big cake!  
He is so stinking cute!
 Baby photo overload coming up!  I love seeing how much the boys just LOVE their new baby brother.
 Jaren is a little baldy in the photo below because he had to take a scissors to his 'owl ear', which I refer to as the sides of his hair that stand straight up.  Ollie had them, too, but never attempted his own correction with a pair of scissors!  He got so close to his scalp that I had to shave his head.  Good thing his hair grows fast!  Eden was such a mommy to Thor when we brought him home.  There is an 11 year age difference between her and the baby so she helps me out so much with him.
 I LOVE his little dimples, just like me and Ollie!

Christmas at Grandma Young's house.  Eden and Thor looks like they planned their outfits!  Uncle Chad got Thor his own Thor doll!  The boys are both into action figures and legos which Grandma got for them.  I think Chad got The Killers lullaby CD for Thorin as well.  Too cute!  We always love going to Grandmas and spending time with them!

My friend, Carrie, stopped by to meet our sweet Thor.  Thor must not like Daddy's scratchy whisker kisses at Chuck E. Cheese.  Eden as the sweatshirt monster.  I know I have a video of this somewhere!  Jaren and cousin, Lydia, at G&G Palmer's house on Christmas Eve.

Thor in his baby blanket that he NEVER sleeps without.  It was from my facebook friend, Fran, who I met online during Oliver's journey.  She is a sweet person who still keeps in touch with us.  The boys and I saw these Yoda Santa hats and I had to get a photo of them in it in memory of Oliver.  A picture of me holding little Thor. I love how they just snuggle right in.  His position reminds me of the thinking man sculpture.  I can't get enough of smelling and touching my face to his soft hair.

Christmas morning.  I wish I would have taken a picture with the kids holding a photo of Oliver.  Eden found the hidden pickle ornament.  There is a cute saying that goes with the pickle, which I can't remember, but the tradition is that whoever finds the hidden pickle ornament gets an extra present, however to avoid weeping and wailing and gnashing of teeth... they get to open the first gift.

A Look Back at 2013 - NOVEMBER

 A comfy way to watch TV.  This was the last picture of these three before baby Thor was born.

 The Horan girls' birthday party.  I love how Finn is dancing with both of them.  He is already a ladie's man!  Hahaha!

9 months pregnant

Eden celebrated her 11th birthday early since I was due with the baby ON her actual birthday at the end of the month.  Nolan, McKenzie, Kamiah and Sayde came and rocked the mustaches.  I splurged and got her some good cupcakes from Scratch!  Her favorite's are Oh, Happy Day and Peanut Butter Cup.  They played some games and goofed around for a bit.
On her actual birthday, we went to Longhorn Steakhouse for dinner and a birthday sundae. She got a gift card to Barnes and Noble and the new Killers cd.  We are so happy she was born 11 years earlier.  I can't believe she's growing up so fast!  We love you, Edes!!

 And so it begins...
 I was due with the baby on November 27, which is Eden's birthday, but he decided to come 10 days early!  I started to have contractions, but felt pretty good which was surprising to me.  I posed for one last pregnancy photo in my 'Battle Born' t-shirt which was fitting for the occasion!  

 I was happy and joking around when I went into the bathroom to change into the gown and when I came out I was ready to get into the bed as the contractions got a little bit worse.  The minute I got into bed, I looked up at the domed lights on the ceiling above my bed.  I got choked up as it looked like an angel in the light.  I started to cry a bit and showed Ed.  I knew our sweet Oliver was there.  I kept whispering to Oliver to be with us and to be with the baby.  It was such an unexpected thing to see.     

I got all settled in and was at a 6 right away.  They sent for the anesthesiologist and I wasn't hurting too bad so I was nervous that I would really be able to feel the needle.  I've never seen the actual needle they use, but I've heard that it's really long.  The other times, I was in so much pain that I didn't care about what was happening to me!  Other times, I could hold Ed's hand during the epidural, but not this time, which sucked.  The guy must have hit the bone or something because it really hurt and I felt sick to my stomach.  It just didn't feel right after he placed it, so he re-threaded it and it was much better after that.  

Every few hours they would come in and check to see how I was progressing.  I honestly didn't think it was going to take so long since it was my fifth child and my fourth, Phineas, was here 20 minutes after we got to the hospital!  I was scared to travel weeks before my due date because I thought I'd have him on the side of the highway or something since Finn was so quick and unexpected!  

During one of the checks, I had to lie down flat on the bed and all of the sudden I felt horribly nauseas and light headed.  I told her and before I knew it like 5 nurses came rushing in and were surrounding the bed.  I was starting to get worried as they were rushing around each doing something different with an air of panic.  A few nurses grabbed the mat under me and rolled me to the side and got me some oxygen and monitored me.  I kept saying that I felt like I was going to pass out.  I felt horrible and was getting really scared at that point.  I heard one of the nurses say, "We lost her".  I whispered, "No......... I'm still here" and laughed.  I think they said that it was a drop in blood pressure that caused it.  I felt much better a few minutes later.  Quite the scare, though!

A few more hours went by and then the time came to push.  I told Ed that I wanted to video tape the birth this time.  We've never video taped any of the other kids' births and this time I really felt like I wanted to see him coming into the world.  So Ed stood behind the doctor, who was fully geared up and started taping.  I started pushing and after a few pushes he came out with a splash!  Holy amniotic fluid, Batman!!!  It shot out with such force that it sprayed everywhere!  Ed told me later, stifling his laughter, that he overheard the doctor telling a nurse that it had gotten into her mouth!  PUKE!   Unfortunately my regular OB wasn't able to deliver so it was the OB that was supposed to deliver Finn last time. (A nurse delivered him as he came so fast).  When my regular OB stopped by to see me later that night she was laughing and said,  "She probably should have worn a face mask on that one!"  Yikes!!  Oh well... child birth throws all sorts of curve balls!!


My first time holding Thor.  He was having some difficulties after delivery and was in the NICU for a few days.  A heart specialist had come in to take over as his doctor.  While I don't remember much about why he was in there, I do remember that the doctor was a Lord of the Rings fan and knew the name, Thorin, and we said that it was actually from The Hobbit, where we got it! 

Thorin and Papa

Thor meeting his Grandmas and Grandpas and my brother and my sister-in-law.

I hate seeing his poor little bruised face.  He looked so tiny in his car seat!

The kids meeting their baby brother for the first time.

The boys are so happy to have another little brother.  I don't know if Thor is too happy as he seems to be flipping everyone off.

Teeny tiny baby fingers...

The boys loving on Thor and Thor just hanging out.

Thor's first Thanksgiving was pretty chill, just hanging out with our little family.
Someone had brought us over some of their leftovers which was wonderful!

I loved this picture of Finn and Thor looking at each other.

 Daddy always gives the first baths at home.  I don't know if Thorin was a fan...