My family is perfectly imperfect and not a day goes by without humour, tears or tantrums. Blogging is the modern version of keeping a diary so feel free to read along while I share the good the bad and the ugly aspects of being me!

Wednesday, 28 September 2011

You Asked - I Answered

Last week I invited all of my faithful followers to send me an email asking any question that you wanted to know the answer to.
Some of the questions were serious, thought provoking, funny and down right foolish.
I have picked a few randomly and decided not to think of what the correct or PC answer would be and I am just going to answer them honestly and from the heart.
Here we go.....

What did I invision my life being like?
I thought that my life would be similar to this but minus the infertility, autism, cancer and stress. I always wanted to get married, have kids and pets, be happy and just feel fulfilled.

What is the hardest part of having a child with cancer?
Seeing him sick and being unable to help and knowing that he is scared of the unknown and not being able to reassure him with any certainty that things are going to be ok.

What is my day like?
It varies from day to day but they are all filled with meetings, treatments, phone calls, emails and other must do things.

Did I always want a unique family?
Honestly.... no. I wanted what most girls want, a husband and some kids. But life comes with twists and turns and the path that I took wasn't a straight forward one, it was bumpy and with pot holes but at the end of the trip the destination was the same.
One of the poems that I love is called Welcome to Holland. When I am having a bad day and I am viewing my life in a negative way I will often read this poem:
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

How do I do it?
This question always kinda makes me laugh, how do I not do it? Its my life, I wake up each day to this existence and so I "keep calm and carry on"... most days are good, most days contain laughter, hugs and smiles, most days I wouldnt trade my life for all the tea in China..... most days.

What are some things that I have learned?
Oh good question! I learned that I really am stronger then I give myself credit for, that nurses are underappreciated, that there are some kind and wonderful people in the world, that blood does not make you family, that I can function on very little sleep, that kidney stones really hurt, that my child is like me in so many ways, that when push comes to shove I can be a mean and agressive person, that I am able to remember the names and dosages of many medications and when talking about cancer the terms and names can sound like a different language, that its ok to tell people that I'm in a bad mood and they need to leave me alone, that hospitals charge way too much for parking, that blueberry coffee is horrible, that I have the most amazing group of friends that a girl could ask for, that my marriage isn't perfect but its solid and stable and will last the test of time, that I am so thankful for my husbands medical benefits, that I appreciate things that many people overlook, that I count my blessings every single day, that I never gave myself enough credit, that I am a control freak and I set the bar really low for the people in my life.
The list goes on and on.... I learn something new everyday.

Am I planning on adding any more kids to my family?
Planning.... no. Hoping...yes. Because of my infertility getting pregnant is nearly impossible and its very expensive so its not something that I can just pencil into my agenda. I go back and forth about wanting more children. By the time I have any more babies Nick will be gone to college and my youngest will be in school full time. But I think about the "what ifs"... what if the cancer comes back..... I dont want to live in the negative and theres that saying "what you fear you create" factor.

What are my future plans?
I dont have any! Who would have thought that eh?!
These past seven months have taught me that I cant plan for everything and that I need to release my grip a bit. I have some thoughts about what I'd like to happen... home renevations, some extra curricular activities for the boys, Nick's make a wish trip to Texas for "real" steak and coasters at six flags. Celebrating my tenth wedding anniversary and getting body into a healthy place. I have lots of thoughts and goals but no real plans.

So there ya have it.... some answers about me... all of which you likely knew already.

Oh I almost forgot - for the person that wanted to know what I eat for lunch.... most days its a lean cuisine frozen meal that's been cooked and then forgotten about in the microwave lol

Friday, 23 September 2011

So This Has Been Happening.....

Another week has passed and things continue to go well. Nick's levels have remained steady and despite his appetite pretty much being non existent, thanks to my "magic" shakes his weight has been maintained too.
Yesterday marked a great feat for Nick and a very proud moment for me. Nick suited and laced up and worked with a goalie coach who was unaware that he had cancer. With the exception of needing to rest because of his heart racing he was amazing.
The other boys are all doing good too. Maxwell is loving pre-school and has become a social butterfly. My shy and anti-social mama's boy is now making friends, humming little tunes and is even busting out the occasional self taught karate move for the amusement of strangers. On a fantastic note we FINALLY got a surgery date for his myringotomy and tube placement surgery in hopes of repairing his 80% hearing loss.
Kurt is doing great at school and today I registered him for basketball which is something that he has wanted to play for a while. This program is not specifically geared towards children with special needs so I dont know how smoothly things are going to go but if we dont try then we'll never know. I'll admit that I am really nervous about him playing with developmentally at par children, oh the situations that I can invision arising....... But I suppose if I want to see my children fly then I first must be willing to watch them leap.
Riddick is struggling with his life skills and is making poor choices resulting in him being repromanded more then usual. Most often even setting expectations of a four year old are too high for him and he is certainly testing my patience as a mother. Its trial and error and I have used every tactic that I have, I've called in behavioural therapists, consulted with the pediatrician, started medication, attended workshops, used IBI/ABA techniques, positive reinforcement and negative consequence. I am at the moment out of ideas but I know that eventually we will find the magic key that will unlock some fantastic gains for Riddick and until then we will just keep trucking along. Riddick also has an upcoming appointment with the eye specialist to see about treatment options for his worsening nystagmus and strabismus, maybe better vision will be the start of improvement.
As for me... well I've been pretty busy myself. I've lost a couple pounds and worked on developing some style (which is harder then I thought it would be). I've participated in a review from the parental advisory board of POGO in hopes of improving pediatric cancer care, assisted in a university students research project about blogging and cancer, have been brainstorming how to better promote my company and most recently was interviewed by a reporter with the Toronto Star about my thoughts and feelings about the notion of IVF treatments being refused to overweight women
While life is not great it is better then it could be and so each and every moment of each and every day I count my blessings. This blog was started as a method of relaying to friends and family what was happening so that I wouldnt have to retell the same story over and over and hopefully maintain my emotions but its become so much more. I never would have imagined that strangers would want to read about my life as there are many others with lives more worthy of being converted to text then mine but yet my words are read in multiple countries everyday.
I am always thankful for the messages of strength, praise and love and I feel very touched that so many people have reached out to me. I'm not a superhero I'm just an average girl who lives a not so average life and this blog has made me feel like there are so many people rooting for me and wanting to see positive things happening in my life and the lives of my family. Since things are going well for us I am hoping to lighten the mood of my next blog post so lets play a little game of ask Cassandra. Send me any question that you would like to ask me and my next blog entry will answer them all!

Until next time;

Wednesday, 14 September 2011

Throw The Raft Or Pray For A Miracle

After finishing my coffee this morning I gathered up Maxwell and headed out the door to get Nick and head off to radiation when I was greeted on the walkway by a lovely woman and her two small daughters.
They dressed in beautiful pink Easter-ish jackets and the little girls sported blonde pigtails. I knew right away that the woman was there to teach me about the "real" God and her girls simply tagged along.
I polietly said that I needed to leave and told her the reason to which friendly and interesting conversation began.
She asked some questions about Nick and about how treatment has been so far and then told me that she "admired my bravery" as she could never do what I am doing. Of course you could if you had to I replied but she simply shook her head to disagree. She explained that her belief is that either God will produce a miracle and spare her child or he would give her the strength to understand that he must take her to be with him for all eternity.
My eyes immediately shifted to these two sweet girls no more then four years old and I couldn't help but ask so if there was a treatment which would save them you would rather let them die?
She told me that the treatment could potentially cause more cancer in the future and would rob them of their ability to create more of gods children.
Her logic and thought process astounded me, I couldnt even imagine my child escentially drowning and having a life raft in my hand only to keep it to my self and hope that God would swoop in and work a miracle. Maybe the miracle is the doctors, the science, the human bodies ability to handle disease & treatment and still recover..... Maybe one persons miracle is different then another.
We said our good byes and went on our way but my mind was still swirling from our conversation. On one hand I thought this woman was nuts but on the other her faith overwhelmed me.
I suppose by default I am catholic, I was baptised, had my first confession and communnion, I was confirmed and only ever attended catholic school but I cant say that I am a faithful follower.
I was married in the Salvation Army church but again didnt feel that I fit in. Desperate to know what religion I am meant to be at one point I even took an on-line test and my results indicated that I should be Quaker..... I dont know about that one.
I have beliefs and a huge spirituality but if told to go to church I would simply be wandering around aimlessly.
Much to the amusment and annoyance of my family I enjoy watching Joyce Meyer on tv. I couldnt tell you what religion she ministries to but she seems so normal to me, often complaining or joking about misunderstandings with her husband and even on occasion letting a swear slip accidently.
Its there, the foundation for belief but it needs to be nurtured and developed or maybe it will be an abstract internal feeling for the rest of my life leaving me with no ability to outwardly be a part of any religious group.
Despite my inner beliefs or outward longing I dont think that I could ever trust God enough to be in total control of my childs life when I know that there are real world solutions, or at the very least treatments.
I don't know if having such intense belief is brave or stupid but whatever it is I know that I don't have those characteristics and I dont know if the feelings that I have for those who do are envious or pitying but to each their own.

Monday, 5 September 2011

With Great Power Comes Great Responsibility

Any parent will tell you that there are multiple times in your child's life when you need to come to their defense or speak up for them when they are unable to do so for themselves.... this is called being your child's best advocate.
This is a term that I hear frequently since I have children with developmental and medical special needs however it is not a role that I imagined I would have to play nearly as much as I do.
This summer I have dealt with multiple issues - doctors forgetting to repeat medication, interlock nurse refusing to write a letter for the school board allowing Nick to continue being on home instruction while he completes radiation treatment, nurses wanting to take a "wait and see" approach to side effects that we've been told are inevitable instead of starting medication to prevent terrible side effects.
Canada's Wonderland stating that they dont have any special medical passes when they most certainly do, Receptionists being tardy faxing in referrals to specialists, Therapists taking 3 months to make an urgent appointment for a child struggling to come to terms with his cancer diagnosis.... and the list goes on and on.
As a parent of children with unique needs I have developed a thick skin, I know that many professionals are not going to like me but being their friend is not my goal - getting the best care for my children is.
This means that there have been times where I have had to call and leave voice mails every day, sit in the office until someone will see me, skip links in the chain of command and seek out supervisors and just be a plain old pain in the ass until what is in the best interests of my children happens. 
I refuse to apologize for this as its a characteristic that seems to be part of the natural development when you parent a child with specific needs.
Tomorrow is the start of the new school year and this means that my requirement for advocacy will increase ten fold as I now will be dealing with four new teachers, assistants, principals and other community affiliates that the school will involve to assist them.
If you were to look at my cell phone bill each month you would think that I was an overly popular call girl. Pages and pages of numbers that I dont recognize and the list of "private" or "blocked" calls is extensive.
I have gotten used to answering the phone and hearing  
Can I please speak to _________'s mother please instead of Hey Cass how are you but I know that its all part of the package.
As the title says With great power comes great responsibility and while that wont always make me popular it will always make me feel as though I am doing right by my children and that will always be a better feeling then being liked by people who wont remember me a year from now anyway.