Wednesday, June 29, 2011

Loneliness, Death, Sadness

I have so many emotions going through my mind right now.

I feel like I'm surrounded by death lately.

My mom had to put her teenage cat, Kitty, a few days ago. Her teenage dog, Willie, down two months ago and her teenage cat, Alley, down a year ago. It hasn't been as hard for me as it was for her and my brothers because I haven't lived with them for that long. Just being around the death makes me sick to my stomach. At times I get jealous because my mind wanders to the fact that my mom's pets may have outlived my firstborn child. It seems as if doctors can do more for peoples' beloved pets than they can for our children -- our own flesh and blood. It's been hard because I know that the animals are given a shot and are gone in 10-15 peaceful seconds.

Getting to know other parents that have lots their children and knowing the stories of their children's deaths makes me nervous as to what lies ahead for Oliver and these other children. They've watched their children lose their abilities -- the ability to talk, eat and move all while keeping their mind... knowing and feeling everything that is happening to them. Some children pass peacefully in their sleep after days, weeks or months of decline and suffering. Others aren't that lucky. I'll spare you the horrific and gruesome details. Being around death in any form makes me think more about it because of the reality of our situation with Oliver. I get uneasy and sad watching movies where there is a funeral or death scene. That may be our reality and it has been for so many others. It just isn't fair. It isn't fair.

Most of my Facebook friends are parents of children battling cancer or those that have lost their children to it. It's difficult to read such heartbreaking posts, but I can empathize with them. I put myself in their shoes... shoes that have walked the same path... but they've gone ahead a little further than my own shoes. It seems like everyday I find out that a new child has been diagnosed, a child is entering hospice and in their final stage of life, or that a child has finally left their grieving families. Five children that I know of, have passed from DIPG this month, Briagh, Brenden, Emma, Garett and Skye. Five young kids... five sets of parents and siblings, grandparents, etc. that are left with gaping holes in their hearts that will NEVER heal. It's more than sad... it's heartwrenching, it's despicable, it's unimaginable. It should not be like this. Please pray for their families and also add Caleb and Lindsey's families to your prayers as they are struggling with tumor progression. Pray for strength, peace, comfort, healing.........

I'm struggling with the loneliness of life... my new life.

I don't feel like I have many friends anymore. Two of my best friends moved states away 1 month and 5 months after Oliver's diagnosis. They both were friends that were like family to me and we've known each other for 9 years each... since Oliver was a teeny baby. It's been over a year since they've moved, but I feel a gaping hole in my heart and I just don't feel the same. They couldn't have moved at a worse time for me. Obviously they don't live their lives for me so they had to move. I felt a huge loss of support when they left. They each knew me... I mean... the 'me that no one else knows' me. We had history together. We laughed together, we cried together, we did really silly things together! I miss my friends. I need my friends. I have like one or two friends here, but they are going through their own hardships right now and aren't able to be what I need them to be right now. I know that it scares people away. People don't know what to say. People don't know what to do with the real and honest responses that you're going through. So, you just say, 'I'm okay'... and they awkwardly move on. If it even makes it that far. Usually you are just completely and utterly ignored. Which makes me sad, and even a little pissed off actually. It's difficult when actions speak louder than words... or INaction speaks louder than words. It says "I don't care enough about you in order to feel awkward by saying something to you so I'll just avoid you all together." At least... that's what I hear loud and clear almost daily.

So... good friends move away = loss of true support and love. Then comes my paranoia with new friends which I'm almost positive is my mental illness issues flaring up. If someone new wants to befriend me, I feel as if they want to get close to us so they can get the real scoop on Oliver. So they can feel important when they tell everyone the news of this or that. They knew it first so they are important. Crazy.... maybe. Has this exact thing happened... yes. So... I feel like I have isolated myself and have built up walls because I want to protect myself and Oliver from these types of people. I know that isolation is one of the first steps of grief... and yes, I've been grieving for Oliver and the life we once had, the future that may never be since the day he was diagnosed.

I've noticed that I've been building lots of walls because of people lacking compassion and love towards Oliver. I've been angry and sad a lot lately just thinking about things people have said and done this past 18 months. I just shake my head at times. And yes, I have said a few things that I wish I hadn't said. Who knows though... I think going through this has made me more apt to say things that I normally wouldn't say. Society needs you to be proper and polite and sometimes I just want to tell people to stick it where the sun doesn't shine! I know I need to find love for these people, but right now... I can't even look at them with any shred of love or feeling in my heart. I hate this feeling. I really do. I want to forget about things that were said and done, but it is extremely difficult.

Life is hard. I feel like I'm morphing into a person that I don't want to be. A black cloud has taken up permanent residence over my head and rarely takes a vacation. I know a lot of it has to do with sadness about the loss of friends nearby and Oliver's diagnosis... just never knowing what is going on with the tumor. We live in fear every single day. If I could look inside his skull and see the tumor. Are the cells multiplying?? What is going on in there??!! I know a lot of it is my mental illness. It's a very difficult illness to have to deal with on a daily basis. I have Borderline Personality Disorder (BPD) or Emotional Intensity Disorder (EID) and I experience all the feelings and emotions you do, but like 100 times more intense. My mood swings can come and go in a matter of minutes, like a tornado. Anger, abandonment issues, paranoia, impulsive behavior, depression, self injury, eating disorders, poor self image, suicidal thoughts, mood swings, perfection issues, etc. It's like OCD, but instead of washing my hands a hundred times, the same thought will cycle through my brain and not stop for hours and hours. Luckily I found a wonderful counselor that specializes in this and I've been going to group therapy to learn ways to maintain some sort of balance to my life. It's been really good for me. Few people have seen these things in me. My good friends know, my family knows, but I didn't want everyone to know because I didn't want to be viewed as weird or weak. However... it is real. It is a part of me but it does not define me. It is what I have to deal with on top of grieving for a child that is terminally ill and taking care of another child that has medical problems along with my 2 other kiddos. Hopefully I can help someone that may be in a similar boat or the same stormy weather. My counselor said she couldn't believe how well I seemed to be doing. She said most people with my illness would be living in a mental institution or possibly committed suicide. I can say that I understand... unfortunately I feel like I'm on the edge a lot of the time. I've contemplated suicide many times. Too many times. At times I just feel like I can't make it another day. It's almost too much for one person to deal with. I remember shortly after Oliver was diagnosed, I found myself home alone sitting in the recliner in our living room and I was crying and just started screaming... at the top of my lungs. 'Weeping and wailing' would describe it perfectly. I just couldn't contain myself. This went on for a few minutes and soon I felt better, but was left with a 'I cried way too much just now' headache that lasted until the next day. Anyways... I'm starting to ramble. I just hope that I can handle whatever life throws my way... I've come this far...

Picnic @ Lowell

Friday, June 24, 2011

My friend Andrea asked invited us to Lowell for a picnic with her family as well as a little girl in the area that is also fighting an inoperable brain tumor. My friend will be her first grade teacher next year at Lowell. We met Rose and her mom at Oliver's benefit and she was a little doll! She warmed up to me quickly and was giving me hugs while I was chatting with her mom. I hope that we can be a support for each other during these difficult times. It helps to know that we aren't alone, although it sickens me as to why. It was nice to get out in the sunshine and play. Rose was a little camera shy so I didn't get a picture of her playing. We'll have to get together again this summer! Thanks for the invite, Andrea!


The kids had fun arm wrestling!

Even Finny got in on the action!

My little blondy boy!

Jaren


Jaren & Ed's Birthdays

Saturday, June 25, 2011

Today we celebrated Jaren's 4th birthday (June 22) and Ed's 33rd birthday (June 23) by going to Sakura and Chuck E. Cheese. Ed had to work right after lunch so I took all four kids to Chuck E. Cheese by myself, which will never happen again. :O) I think I had a momentary lapse of sanity! I couldn't keep up with all the kids. Oh well... they had fun.


Finny and his 'angry face'


The Birthday Boys!

Ollie and Eden

Finny loved riding in the cars.





Love that face!





"Happy Birthday, Jaren!"
video

Father's Day

Sunday, June 19, 2011

"HAPPY FATHER'S DAY!!!"

Ed being a weirdo proudly showing his "Spongiest Dad" button.

Finny laughing at Oliver.

Finny doing a silly face

All my loves...

Thursday, June 23, 2011

Ollie's 10th Birthday is NEXT MONTH!!!



**OLIVER'S 10th Birthday**
JULY 11, 2011



I'd love to surprise Ollie again with a card shower... more like a stormy downpour of cards! If he could have as many candles on his cake this year that he received cards during Christmas, we'd need a cake the size of a house to put them on! So if you'd like to help make his 10th birthday one to remember just send a card to:


Birthday Boy - Oliver Palmer
417 Oaklawn Avenue
Waterloo, IA 50701



As the months have gone by a few cards come in here and there, so I'd like to see that excitement in his face again when the mail lady comes with cards and notes just for him on his special day! Please let as many people know as you can. I often send cards to children I've never met in hopes of brightening their day a bit because I've seen it first hand in my own child's face. We are hoping for a fun, sunny day to celebrate. Still don't know what exactly we'll be doing, but hopefully he'll be swamped openning up his cards. :O) Thank you...



Tuesday, June 21, 2011

ASTHMA = AMBULANCE

Monday, June 20, 2011

Tonight around 11:00 pm, I noticed Oliver was having troubles breathing. He said that he wasn't feeling well so I gave him a breathing treatment. He quickly got up and rushed to the bathroom and had 'some nasty diarrhea' as he put it. I was sitting in the living room and he came around the corner with a panicked look on his face while clutching his chest. Evidently that first breathing treatment didn't do the trick, so I got another one going for him, watched his chest and called 911. I told the dispatcher that he was having an asthma attack and that he has a brain tumor so I wasn't sure if the asthma attack was due to his chronic symptoms or due to the tumor. You just never know...

A few minutes later, the fire truck and ambulance came and saw how he was breathing and checked his vitals. They swooped him up in their arms and carried him out to the ambulance. I told Ollie that daddy would meet him in the ER because I had to stay with the other kids that were all in bed. I called my mom and asked if her or my brothers could come and stay with the kids so that I could see Ollie at the hospital. I didn't want to get in the firemen's way so I walked out and told Ollie I loved him and that Ed would meet him at the hospital. I then walked onto the front porch. I thought they'd drive away immediately, but the door was shut so they must have been trying to get an IV in him. I stood there forever waiting... and wondering what was happening in there. Finally they left and my mom pulled in with her car still running so I could just jump out and follow the ambulance. Tears were streaming down my face at that point. I had to try and hold it together in front of Oliver the whole time, but when I was alone in the dark car, I just couldn't help but think about if that was the last time I saw him alive. Would he make it? What do I expect to see at the hospital? Asthma kills people. I managed to calm myself down before I saw Ollie again.

I parked the car and ran into the E.R. and thanked the guys that helped him. The guys that Oliver knows happened to be working that night so I'm sure that helped calm him in the ambulance... to see some familiar faces. I saw Ed and we talked with the doctor and nurse about Oliver's diagnosis. They put an IV in and gave Oliver a steroid shot and put him on some oxygen. He was still warm and red in the face. I hate seeing him like that. After a bit his breathing returned to normal, but they wanted to admit him to the hospital. He had a chest x-ray and we waited by his bedside. I rubbed his foot while Ed was up by the head of the bed. We were cracking jokes to make him smile and try to get his mind off of being in the hospital. After a few hours of being in the ER, he still didn't have a room yet, but I had to get back home and relieve my mom. I told Oliver I needed to get going and he broke into the saddest puppy dog-lip quiver - lip sticking out look that I've ever seen! It just broke my heart looking at him trying to keep back the tears. Ed told him he'd be there with him the whole night, that he'd never be alone.

He was only there overnight. He came home the next evening and had several medication changes. Hopefully this will help him have more time between attacks. I know that Jaren has been struggling with his allergies and asthma lately as well. It must be that time of year. It's good to have him back home again. He sure knows how to give his mother a scare!

Oliver's MRI - June

Tuesday, June 14, 2011

I thought this sign was pretty funny. We eat at Chili's a lot when we go down there since we don't have one here in town. I love their chips and salsa as well as the fact that they support
St. Jude's Children's Hospital.

Ollie and Bear



Wednesday, June 15th, 2011 - MRI day


Jaren watching the 'ghost playing the piano' at the hospital in Iowa City.

Oliver waiting in the children's area.

Weighing in...

Reading Teenage Mutant Ninja Turtles while waiting in the room for the doctor.

Ed looks like he's getting a once over by some weird alien device or a women's nylon container... :O)


Ed and I have been very nervous for this MRI, as Oliver's weakness and gait have been getting worse. He's been stumbling more lately and choking here and there. These are all signs of progression, a term for tumor growth. He went in and had his MRI in the morning and then we started walking through the hospital to see his radiation doctor. We were surprised to see some friendly faces down there! Out of the elevator pops Karen Blough and her two sweet kids. She took our family photos right after Oliver was diagnosed and several months later, her own sweet little boy was diagnosed with a brain tumor. When my friend had told me about her son, my heart sank. I wanted to contact her immediately as I know the lonely road that she was most likely on. It was the first time I was able to meet her kids... he was there for a checkup. He is doing well following his surgery. :O)

We continued to radiology to meet with Dr. Buatti. We usually wait for a bit in a little room for kids off of the main lobby. Ollie usually plays at the magnetic table or pushes the button to watch ping pong balls make their descent through a winding track of sorts mounted to the wall.

He gets called back and his vitals are checked and then we wait in a room to talk with the doctor. A new resident that we've never met with came in and I braced myself for horrible news. I just knew that they were going to say that his tumor had grown... but I was completely shocked when he said that it was stable and may have even shrunk. I looked at Ed in complete amazement and then at my mom. I couldn't believe it! The doctor came in and confirmed what the resident had said. I am amazed. It's been nearly 18 months since diagnosis, 6 months longer than we were told he'd live. I think I'm still in shock. What now? His next scheduled MRI is in 3 months. He just started physical therapy in hopes of strengthening his muscles. He just isn't as active as he once was. Hopefully we'll learn some things that we can do at home with him. I can now exhale............


Outside Old Chicago... I had to get a picture of Ollie's favorite baseball team and football team on the same sign!

Herky statue. Herky is a mascot of the University of Iowa and there are many statues around town of him!

We drove to Cedar Rapids and stopped at Biaggi's to celebrate my brother, Chad's birthday.
Mom, Chad and Jaren

Ed, Jaren, Oliver

This kid LOVES spaghetti! :O)

Chad and Ollie

Ollie and me

Sunday, June 19, 2011

Physical Therapy & Speech Therapy

Tuesday, June 14th, 2011





Today Ed and I took Oliver to his first physical therapy appointment and he also had an appointment with a speech therapist there. We were there for 2 to 2 1/2 hours while they created a baseline... things he can do the first time they see him. I guess this way they have something to go off of if he gets weaker they have his baseline to compare it to.

We went in and talked with the PT, Kelli, who had a student there to watch. She had him do a few things with a gait belt around him, watched him walk straight as well as up a flight of stairs. She asked us lots of questions about his symptoms and hoping we can get in some exercise to undo the effects of inaction. We went over what we'll be doing the next few weeks and then walked to another room to talk with the speech therapist. She had Oliver go over some books with her to get a baseline of where he's at in that aspect. Jaren was loving all of the bouncy balls and things to play with in there! I think we'll be flyin' solo at the next appointment. They were really nice and I'm excited for Oliver to have something to work toward and see the growth in his abilities.