Wednesday, July 24, 2013

Summer time fun, minus one.

Dear Sweet Cashy-

Well it's been quite the rollercoaster of events in the last few weeks. The last time I was able to write to you was before we were heading to San Francisco to do a viewing of your documentary and to celebrate your 5th birthday. We flew into Salt Lake City for our first layover on Wednesday, June 19th. We had a 3 hour layover, so Mike's Uncle Sam and Aunt Jen picked us up and we went and visited Grandma and Grandpa for a couple hours before we had to be back at the gate to depart. Sissy did really well on the plane and just nursed the whole time and woke up when we arrived. We arrived at the Oakland airport around 11:30pm and CJ and Russ picked us up and we drove to our house that we rented for the week (thanks to CJ and his travel agent skills). The road to get this house was insane, it was windy and curvy and it was almost like we were
he time we left Monday CJ had mastered driving the huge Escalade on these tiny streets.

On our way to the house we stopped by John and Corinne's house to say hi and visit for a few. It was so late but thankfully they had some spaghetti ready for us. We were starving. Thanks guys for being so hospitable.

So a little bit later we arrived at our cute little cottage type house. We all had our own room and Colten camped out on the couch. This little house was so cute!!! It made our stay in San Fran really nice!

The next day we got up after sleeping in a little. We got ready and drove down to a local area that reminded me a little bit like downtown Missoula.

We grabbed breakfast at a local diner and then hopped across the street and grabbed a coffee. We met a twenty year old parrot that a man was carrying around on his shoulder. Colty thought he was pretty cool.

We then drove over to John and Corrine's to put together 4 reggae runners, stickered them up, and mounted the IV poles. They were all ready to donate!

We drove back to our little cottage and got ready for the premiere of your documentary. The movie played at an old theater that Charlie Chaplin had
performed at many times back in the day. I thought that was a pretty neat fact. The viewing went really well and it started off with a very touching opening speech by Johnny. He made me tear up like three times. Good job
John, you did a great job!!

Corrine's father, who is 80, had been diagnosed with Stage 4 lung cancer that metastasized to his brain. He was at the end of life, no more treatments, and little hope left. They started him on cannabis oil and proudly he had been cancer free now for 8 or 9 months. He shocked medical
professions, he proved them all wrong and was at the documentary and John talked about his courageous journey and everyone cheered him on for his bravery! It was very touching. A truly amazing story. I only wish we were telling the same story about you Cashy. Thanks John and Corinne, with United Patients Group for setting up such a wonderful evening and event. It was nice to meet all your friends and family. 

We eve got to meet the parents of little Silas, another little boy fighting for his life with a leukemia diagnosis.  He can be followed at strength for Silas on Facebook. He's such a cute little guy.  I know your watching over and protecting him.  

After the documentary was over Mike and the kids and I got on stage, Mike did a quick speech and then everyone in the crowd sang Happy Birthday for you. It was bittersweet and brought tears to my eyes. You are so loved big boy. 

After the movie and everything was over and cleaned up, we all went to a local Italian restaurant to grab a quick bite to eat. As we were eating daddy was quickly disgusted and let out a gag/barf noise as he went to take a bite of his salad and notice a maggot squirming on the side of his plate
on a piece of spinach. OMG, we all about died. I swear it was pink tinged. 
So gross!!!! Thankfully they took it off the bill. LOL. After everyone else ate (I was done after seeing the maggot), we all headed back up to John and
Corinne's for a fire and some good company.

After chatting around the fire with 15 people or so, Ringoa nd Cat, Domo and Billy, John and Corinne, CJ, Russy, Cowboy, Colt Dog, baby Sissy, Brian and Chris. We all went back to the house and crammed everyone into our little place; we had people on the floor, people outside on the deck, people on air mattresses. It was interesting!!

The next morning (the day of your should be 5th birthday) we had to be up bright and early to donate the Reggae Runners to the two children's hospitals in the San Francisco, Bay Area. It was so surreal doing this without you this time. Last year you were with us for everything. It's unreal to think you've been gone so long already. We miss everything about you sweet boy. Everything.

After donating the reggae runners and seeing all the happy faces as we rolled the cars on the pediatric units, we grabbed a bite to eat at the restaurant we ate with you last year for your birthday. The Elephant Bar. Such yummy food!! I saw the table we sat at last year and I had a little flash back of singing you Happy Birthday. It's so not fair that you weren't here this year to open presents and sing Happy Birthday with us. I miss your little giggle and your shy little grin.

That evening we decided to do a little site seeing again, and gave all the boys a tour through Little Italy and Chinatown, and we at a little pizza joint. I burned Daddy's arm as I was trying to hand Colty a piece of piping hot pizza, it slipped off the spatula and fell on Daddy's arm sizzling it to all hell. He's still giving me grief about it.
We drove down to the beach to try and light off the Japanese floating lanterns, we were so excited about this, but as soon as we got to the beach I knew it wasn't going to work. The wind was so intense and we couldn't even get the sucker lit. I'm sure you were looking down on us and laughing your butt off. I'm sure it was a site to see!! Sissy also took my sun glasses I've had for 3 years off my head and lost them in the sand that night. I still haven't bought a replacement pair yet!

The remainder of the trip the boys worked the booth at the cannabis cup and they were very busy all weekend long. Mike always gets a raspy voice when he works a booth. He's non-stop talking.

I took the kids to the space museum trying to kill some time. It was very neat and Colty had a great time. On the way back to where the boys were (let me remind you me driving in a big city in a giant Escalade) my phone (Siri) kept giving me the wrong delayed directions and I drove over one of the huge bridges as Siri said, well she told me to turn left and I did, well we were completely in the wrong area, so I got back on the road and the directions told me to go left and I thought that couldn't be right, so I went right and, well wrong. So now I'm going back over the bridge we just went over again. Eff, so now I had to go back the other way over the bridge again. So an hour and half later we made it to John and Corrine's house alive. Lol. But I was a little frustrated. Seriously I was ticked! I decided no big treks across the city the next day. Hahaha.

We always have a booth at these cups because of you Cashy.You represent the change that is needed to make this world a place where cancer treatment doesn't involve nasty toxic medicines that ruin and poison your immune system, or losing your hair, of requiring you to live in the hospital for months on end hooked to IV poles and morphine drips from the never ending pain the all above has caused.
We like to spread awareness and keep your legacy alive by showing parents that there is another alternate form of treatment, and that there needs to be more research so this can be a valid from of treatment offered before the toxic cocktails they offer. Someday soon Cashy, someday soon. We're working really hard to tell the world. A lot of parents are getting on board and using this treatment and it’s amazing that there are so many families affected by not just cancer, but epilepsy, crohn’s disease, autism, severe ADHD, and on and on. So many families are using this safe non toxic form of medication for their babies, and that they would do anything to save and help, it's catching on and there are more and more news articles and stories out there every day.

Well we wrapped up the weekend with a trip to the children's museum with John and Corinne and Corinne's daughter Isa. The kids had a good time and we had dinner afterwards. Thanks for entertaining us for a few hours!

When the boys returned from the cup, there were hungry and John and I made them some halibut and fried garlic spaghetti. They were very happy to be fed. It's hard to eat healthy when on trips away from home and it was nice for them to get some good home cooked food.
We were able to catch a later flight as we didn't realize we scheduled a 6am flight which meant we would have to leave for the airport at 3:30 am as it's an hour drive. Ugh. Thankfully we only had to pay 50 bucks a ticket to change to the later flight home. Well worth the 150 dollars.

Since we've been home, we've been floating the river every chance we get. We have a 16 foot self bailing Odyssey raft and it’s so much fun floating with the famon it. You had so much fun with us last year when we went. You kept squirting everyone with water! It's not the same without you on the river. Sissy borrowed your hat. I was very adamant that your daddy keep very good tract and care of your hat. We kept the synch tie at the same size of your head. I couldn't bear to move it. Actually I didn't even want sissy to use it, it means that much to me.

We went camping and in the last week we've been to two weddings. Both long time high school friends. Jacque got married on the 13th and Jami and Seth on the 20th. Both weddings were beautiful in their own way and both Jami and Jacque looked amazingly beautiful. I love weddings. Two more to go this summer!!! Lila and Chase and God ol' John and Corinne! We're so excited for all you guys. Marriage is a challenge; it's not always pretty rainbows and butterflies, that's for sure. Along with love and lust, also comes bitterness, anger, sometimes resentment, hormones (lol), and arguing. But with any couple, (I don't know the least about being successful at marriage) we've had our fair share of troubles and sorrows, heartache, sadness and then comes the death of you, our precious baby. Losing a child is definitely not easy on a marriage, as I read where 80 percent of marriages divorce after losing a child to cancer, hell that's a lot!! But I feel we've overcome the mounds of pain and heartache (essentially, everyday without you is painful), we've been there for each other and we've definitely grown as a couple and a family and I'm proud of that and I'm happy, and that's all that matters, right? (Well as happy as I can be without you here to hold and kiss).

Our good friends Casey and Brooke are getting ready to have their first bdby together.  It's a little baby boy.  We're all so excited.  She has a c section scheduled on Tuesday! We can't wait to meet little soul.  I know you will be looking over him and Brooke during the delivery.  You would be so excited to hold him if you were here.  You are such a good big brother to sissy I know you would just love little Soul.  

I've been working in between all these weddings and floating trips and vacations! It's been one busy, busy summer. It seems like just when we get home I have to go back to work the next night. It' makes for an exhausting last few weeks.

Sissy is getting so darn big and she is the cutest little thing too. Everything she does reminds me of you. Her little laugh, her smile and cheesy grin, her hair, her little flat white naked butt (it's just like yours when you had some chunk on ya), even her little voice sounds just like you. Her mannerisms are yours too. It's so strange and amazing at the same time. It's almost like you've been reborn through her. I like to think that. Don't get me wrong she is her own person but everything with her is so familiar from you.

Monday was a big float day with John and Corinne as they are in town again to work on their wedding plans for september and to lounge at their house in Darby; it was Johnny's birthday yesterday and we hit up the Blackfoot with the fam and everyone. It was a really fun float and everyone had a great time! We can't believe the river is so low already. No more taking the big raft on the blackfoot, to many rocks we bumped into.

Thursday is the viewing of the documentary at the Wilma here in Missoula, MT. We're so excited to be able to show off the film to our fans, friends, and family here in town. It's going to be a great turn out and we’re all really excited!' Thursday evening 7:30 pm at the Wilma!! Can't wait to see everyone!!

I hope to never be the person I was before cancer again. I am a changed person, changed for the better, changed because of the new life that we live without you. Not only am I changed because of the battle you put forth, but I know that a big part of me died when you died. A giant part of my heart is missing. It feels empty. I envision it to look like a giant piece of Swiss cheese. Not just one hole, but many tiny holes, each hole developed as your disease progressed, each hole that grew (or in this case, decayed) when you were re-diagnosed the second and third time, when you had to endure pokes and prodding, when your little body started slowly dwindling away right in front of our very own oblivious eyes. Tiny bits and pieces of me disintegrate into this gloomy and crude world we live in, it disintegrate into a small blob of something I don't even want anymore, something I don't even recognize.

Why would I want to carry around this empty cavern of a heart of mine? Why? Because it is all I have left of you, the memories, the feelings we shared. They are all in my old used up sponge of a heart. The parts that are left are those memories, those good feelings we shared, the slideshow of pictures and events that play over and over in my mind, they are forever in my broken heart.

I never want to forget those feelings, because those feelings made me who I am today. I'm proof that you can survive without a fully functioning heart. Some people probably don't appreciate the type of person I’ve become. I've learned to not care what people think, I've learned to brush off the drama that would usually feed my hunger of emotions. I've learned to realize that although people offer their words of wisdom, they offer their solace in a time of need, "Call if you ever need anything,"...Ya, like I’m going to do that. I need a lot of things; I need a friend to talk to once in a while. I need you to say my son’s name and not cower or cringe when it’s said, but I'm not going to call if I need something. No matter how needy I am. That’s just not the type of person I am. Sometimes I think people just say that to throw it out there, to make you feel like they do care and they do want to help, or maybe it’s just because they don't know what else to say and I know people do care, they genuinely do. I mean I totally understand, what do you say to someone who's lost their heart and soul? What do you say to someone who’s spent the last 3 years of their life trying to save their child from a disease where you know what the outcome is most likely going to be?

I used to be so optimistic. I always had this feeling that you would be ok. You would beat those grim statistics, that you would be that 20 percent. I always believed that you would be that kid who beat all the odds, multiple times. I never thought this would be our future, a future without my second born child? The only child that we actually planned to have with the love we shared. Your brother and sister were both very big but amazing surprises for us. I’m so thankful and grateful to God that we have them; I would be locked up in Warm Springs Mental Hospital if they weren't here. So I thank God everyday for the healthy beautiful babies that I have left on this earth, and I also thank him for the amazing time we shared as a family with you Cashy, I thank him for the experiences we've had, the things that we wouldn't have gotten to do if it wasn't for you. Most of all I thank him for giving me YOU. You were perfect in every way, from you head to the oval shaped mole on the bottom of your foot, and all the way to the tips of your stinky toes (they weren’t ever really stinky, we just pretended and you thought it was so hilarious).

I should have known you were going to be something extra special when the doctor told me that it’s extremely rare for a child to have a mole like that on the bottom of their foot. You were already one of the rare ones before we even knew it. I truly believe you were sent here to change the world Cashy. To aid in the change that is needed on this earth. You've opened my eyes, wide enough to realize the things that are needed to make this change. It will happen soon, thanks to you buddy.
Colty and I went on a mom and son date last night to the movie.  We saw Grown ups 2 and cracked our butts off the whole time.  It was good to get out with just him and I, but I couldn't help but miss you. 
Love and miss you monkey man, more than anything on this earth. I hope you’re safe, I hope you’re happy, I hope you can look down and smile at your family who misses you so much. I love you to the moon and back, to infinity and beyond forever and ever.
Your momma.
Cashy crusaders-
Here is the link to watch Cashy's slide show if you haven't had a change.  This was played at his funeral.  Its a great slideshow and shows Cashys life and journey very well.

Wednesday, July 10, 2013

Cancer, a perspective changer.

Cancer is a perspective changer. If you can get past the oppressive nature of the grief and make room for it in your day to day life, then you can get to a place where you start to see not just the bad, but the total experience of what living through that trauma does to you, the wisdom it provides.

I used to work at the Springs of Missoula in the Alzheimer's unit. I met a few lifetime friends there. Amanda Nichols is one. We've now been friends since 2006. She's been supportive and especially helpful with the foundation when needed.  Your awesome Amanda and Nick!   I would say this job was probably one of the hardest, funniest, yet hilarious job there is. Colten was only 9 months
old when I started working there. This was my first "real life" job as nurse. I had earned my LPN license and was still in school working towards my RN license. I received lots and lots and lots of unsolicited advice from very well meaning older ladies who often told me the same thing, "Enjoy it -- it passes so quickly." Those words used to annoy me to no end. But you know what? It's true. Those gals in their old, senile age knew what they were talking about. Our children's childhood's do pass quickly. Enjoy it. Work hard to find the beauty in each stage of your child's life. When you're washing the jam or baby food that went flying off your face, know that someday you will pine for that unsolicited sticky kiss of a child. When you're cleaning the crumbs from the car seat, know that one day they will be driving away from you. When you're in the midst of whatever battle royale you find yourself in, know that every
moment is a gift, even the unbearable and unimaginable ones. I've said this a lot, and I've even been ripped to shreds with friends over this exact saying.

Some people do not take things to heart until they see first-hand the destruction disease and death can cause, the pain that it brings and the overwhelming empty feeling your heart has after the loss of a child. No one knows this pain unless they've experienced it first-hand. No one knows what it's like to bathe your lifeless baby's body after he's taken his last breath of life and to hold him like it was literally the last time while his little body slowly stiffens as you say goodbye until you see them again in the afterlife. Love your healthy children like the miracle that they are.
There is so much wisdom I have gained from my sweet Cashy's life and death.
Every day I try and remember what he's taught me. Hardest thing of all is
thinking about what our healthy 8 year old and 1 year old are teaching us.
What lessons can we learn from them? Each kid is unique and has something to
offer. Look for the lessons and opportunities to learn. They are there, but
we don't always notice them. Every day as I watch little Sissy grow and
learn, I'm amazed with how much she reminds me of her big brother and how
lucky we are to have the three children that we have and had. Nothing is a greater gift in life than holding your baby in your arms and looking into their soul through their beautiful eyes. So innocent, so pure, so amazing.

The hardest thing I have ever done in this life (at least I'd like to hope) is over. It's true. I honestly believe that the hardest thing I will ever do in my life is to say goodbye to my child, knowing that his last breath was taken in Daddy's arms with me close by. Will anything ever match the feeling in my heart as they lowered my brave boy's body into the deep dark ground? I don't think so. Everything else related to my mothering is a privilege. Everything. I try and remember that every day.

How do you share the good without bringing up the bad? I often struggle with the boundary line of talking about my sweet boy, who I of course want to
share with his story with the world, but when is that line crossed? Do I dare even mention he's gone and an Angel of God? I'm usually pretty good at judging whether to delve into it or to leave it as it is.

Sometimes I wonder if I prayed hard enough, if maybe I spent more time alone
praying for Cashy's miracle, (don't get me wrong, I prayed for his complete
healing every chance I got), but maybe if I was praying for God to give you that
3rd and 4th chance you so desperately needed, maybe things would be
different. Maybe if I had been baptized Catholic like everyone else has,
maybe he'd still be here? Were Mike and I the only ones who didn't think he was going to die? Did we just have so much hope and belief that he would make it through? Or were we that oblivious to see what was transpiring in front of our very own eyes? That we were losing our sweet boy to cancer...God I'd give anything to have him back in my bed, in my arms, snuggling and holding my hand in his, kissing his baby sis and saying with a
smile and tilted head, "ahhh." He was so proud of his baby sister; I know
he is still, as she carries parts of Cashy in her. Today she made me turn
my head and double take for a minute, when she loudly went, "YAY!!!," and
put her arms in the air, she sounded just like my Cash man, it was seriously
his sweet voice transcribed through her. It made me smile and want to cry
at the same time.

This blog post was really long and unfinished so rather than waiting to post what I have till I'm finished, I'm going to post in a couple separate posts.  So stayed tuned for part 2!! Thanks again everyone who follows and reads my blogs.  I never would of thought writing my thoughts could be so soothing to my soul, but it is and that's why I continue to do it.  If I offend anyone in the process, I'm sorry, its not my intention, I love everyone and everything!   One Love!