Farewell 2012 /Welcome 2013

It only seems appropriate that I end the year with a blog entry. 

I open by thanking my family and friends for their on going, unwavering love and support. 
Without my John and our children I would be hopeless.
Without my Mom I would be lost. 
Without my fellow monster fighter Holly I would be insane. 
Without my regular check-ins from a number of incredible women I would be lonely.  I would start listing them but then I would forget someone and feel dreadful.  You know who you are.
Without my Wednesday "meeting of the minds" I would forget how to laugh.  I already miss Nutcracker rehearsals for that extra time we get to spend together and the women I don't see on Wednesdays.  Maybe you should all just show up at the studio anyways ;)
Without my Facebook friends and community(s) I would be bored, uneducated and dull.
Thank you.

2012 has been an incredible year. 

Our children have grown, matured and are becoming some of the most amazing people I know.
Amy is fabulous.  I was so proud of her during the Nutcracker and the kindness she showed towards the little dancers. While some of the older girls largely ignored the littles, Amy was always present and willing to help and encourage.  To have other parents comment on how wonderful she is makes this Momma very proud. Shine on smart girl.
B has made a complete transformation since his heart surgery in March.  Most notably he is growing.  He has grew 1 1/4" in the past two months.  He continues to try hard at school even though its challenging.  He has formed some amazing friendships and is truly one of the most caring boys I know.  This just proves once again that gender, labels and diagnoses do not define a persons character.
Dana is our brave song bird.  Never silent and extremely resilient, Dana is turning into a very strong and confident young lady.  She has an amazing memory which comes in handy for me.  She is always available for a hug and is very intuitive about what each member of our five needs.  I have to work extra hard to make sure she gets what she needs in return.
John has proven to me over and over again that I chose well so many, many years ago. Almost twenty three years if you are counting.

2013 will bring more obstacles and difficulties. 
We can already see them and around them.
With each challenge there will be further growth, rewards and fresh outlooks.

We are looking forward to continuing expansion on our farm. 
I'm starting the vision board today...  I NEED a plan that I can see!
I am looking forward to learning more and spending time with more like minded families.

We are taking more control of our health individually and as a family.  I am the expert on me and mine.  Our expanding team is going to have to check their egos.  I'm sure I will share much about that as January rolls on.

Farewell 2012.

Welcome 2013.

Before we go any further...

Everything I write belongs to me.
I own it.
Whether it be my thoughts, feelings, perspective, my opinion or other wise, it is my reality.
It's not open for debate.
It's my story.
How you interrupt my words it is up to you.
How it makes you feel isn't about me.
It's about you.
Your story.
Your feelings.
If something I have written makes you uncomfortable, ask yourself why.
I don't write to hurt others.
I write to give a voice to my truth.
It is my outlet.
More and more often I find myself censoring my words.
I feel like I can't be authentic in my own space.
Today that stops.
I have acknowledged repeatedly on this blog and in person how grateful I am to those who have loved and supported us this past couple of years.
Many relationships and friendships have forged and solidified.  We are very fortunate indeed.
To have people question my gratitude is annoying in the very least.
Disappointing and yet very predictable at best.
If we haven't accepted every offer of support and help there is a reason.
Don't question it. Don't try to make me feel ungrateful.
I know who I am, what I need and when I need it.

Living history

In 1993 I was a first year college student in Peterborough.  John and I had been dating for almost four years.  Most weeks we would return to the Highlands driving on a less traveled route through a small village, Mount Pleasant.  On the very first trip through this wee town I instantly fell in love with the breath taking view, the fields, the trees and the rolling hills.  I wanted to live there.
Over the next couple of years I had become friends with a young woman who lived with her parents on a small hobby farm on the out skirts of the same city.  Though I had never spent a day on a farm before I really enjoyed this little piece of heaven.
Ducks and chickens chased bugs.  Sheep chewed lazily on grass.  Goats climbed and chewed just about everything.  This family grew and ate their own fruit and vegetables.  They pasture raised their own meat.  At the time I remember feeling envy and awe.  It became a dream - something to aspire too - someday.

 Fast forward to 2003...

John and I had been married for six years.  We had two children and one on the way.  We had sold our tiny house and needed a place to live - immediately.  John built me my house on the hill. Not the same hill but this one was way better.  Now, everyday I am surrounded with a similar beauty I had loved and longed for 10 years prior.

Summer 2005

When we chose to build here we talked farming. In the future. We had the land but with both of us working and three children under five we severely lacked time, energy and resources.
We lived vicariously through John's parents who were returning to their roots and building a small farm.  Every time we visited we enjoyed a trip to the barn to see the sheep, goats and chickens.   In the summer their cattle would graze in our pasture.
As our children grew we decided it would be manageable to have a few chickens.  And so our farm began.


BLACKberry Fields - Present day...

Tamworth weaner

As I have mentioned before I knew the day the tractor rolled into the yard there was know turning back.  Our dreams were becoming a reality and much quicker than we ever believed. 
Today we have 20 laying hens and a rooster who wander the yard and 30 more on the way.  Thirty other chickens will be raised for meat. Four piglets arrived last week.  They are being pasture raised for their meat.  A trio of lambs will arrive next week to help with the grass cutting and be sold in the fall.  Two bee hives are being relocated here to expand their pollen source and provide us with honey.  We are in the process of securing a cow or two.

Amy and John
 installing fence posts

The vegetable garden just keeps getting bigger and bigger. John will till it again tonight so I can begin to plant it this weekend.  I will care for the plants through out the summer. Together we will harvest and preserve our crops.

Over the past three months John has rarely stopped moving.  He works full time as a carpenter then comes home and continues to work at any number of tasks here on our farm.  With the help of our oldest daughter, Amy,  they have placed countless fence posts and strung hundreds of feet of fencing.  As I am limited in my ability, the task of building our family farm has fallen largely on him.  So with this post I want to thank him for making my, our, dreams a reality.  I am grateful everyday to be sharing this amazing experience with you, our children and the friends who join us along the way. xo

Sending much love and gratitude from my piece of heaven here on the hill.
Steph  xo

State of Happiness

There is one thing I know to be true.

I am responsible for my own happiness.

When I look externally I will be disappointed.

The decisions I make will determine my state of mind.

My happiness is internal.

I really don't have to look very deep to find it.

I just have to surrender to it.

Let go of the past.

Make peace with the present.

My happiness begins with John.

It always has and always will.

The home we have created together.

The hard choices we have made.

The amazing children we share.

My happiness lies in the garden, deep in the soil, amongst the flowers.

It is inside our home, in the kitchen mixed with the ingredients of a new recipe.

It's lost in the pages of a good book. Inside my imagination.

It is at my fingertips when I dream, create and make.

It is with my friends who help me remain authentic and sane.

Happiness is here, under the surface.

Somedays it's just harder to find it.

Food frenzies and friendship

One of things I miss the most about my pre AVM/Gamma life is my ability to network at my own will. To jump in my van and visit friends, walk around head lake, go to the grocery store or even go to work. To talk to friends, family, acquaintances or colleagues face to face. To exchange information. Thank you Mark Zuckerberg for Facebook or I would be completely insane by now.

This past Sunday John and I enjoyed the company of eight other families at our monthly "Gluten Free Food Frenzy".  The group was established by my friend D and her daughter this winter in an effort to "simply share knowledge and build community around the gluten-free lifestyle by hosting a monthly feast. It is a family friendly fun and fabulous free of gluten (egg, soy,dairy, peanuts and other allergens) food fest."   Month to month the attendance and location varies but each of us come to enjoy fabulous food with like minded families.  Not all of us have food allergies but we all share the belief in healing our bodies with good food.

Sunday morning was rough for me.  I had continual focal seizures and I was exhausted.  Logic said I should stay home and sleep but I chose to go.  I am so  glad I did. 

My friends know that at times its difficult for me to string a sentence together.  To focus, collect my thoughts and say what I want to say (Writing is easier. Possibly because I can continue to edit over and over). After a morning of seizures I thought I would be a disaster.  I didn't plan to stay long.  We were the first to arrive and one of the last to leave.

Funny thing is my comfort level with this group was so relaxed that I never struggled at all.  Ok I did a little but it wasn't a complete disaster. I also knew that if I did have a seizure I was completely safe.  John was by my side to translate if necessary.  My friends wouldn't care if I couldn't talk, stuttered, stammered, or even drool.  We had the stage ready if we needed to play charades ;)

How refreshing and rejuvenating it was to have real conversations about the things that matter to me that wasn't completely AVM related.  How wonderful it is to have loving, caring, real friends, both old and new.

Thank you John for taking time away from fencing to support me.  ( thanks for fencing as well)

Sending love from the hill.

The Real Cost of Being Ill...

John and I are breathing a little easier this month.  For the first time in nine months I received an income, from CPP Disability.  You may recall in an earlier post about the hoops I had to jump through to get it.

Though it is not what I would be making if I was actually at work I welcome it.  And I'm not too proud to accept it and my now "disabled" status.

Prior to my diagnosis, in February 2011, my position at work went from a full time with full benefits to a part time with zero benefits.  Zero benefits means no Long Term Disability insurance.  It also means when 15 weeks of Sick Benefits from Employment Insurance runs out there is no money left.  At least for my family.


Being ill or supporting someone who is ill is mentally and emotionally draining.  Doing so with no income is undescribable and extremely stressful.  Stress so intense that it often causes more health problems or further complications.

Thank god we had a freezer full of meat and four credit cards to juggle our increasing debt load.  We are very fortunate that friends pitched in where they could.  By purchasing our eggs, jam, blankets etc.  By sending us gift cards for groceries and gas.  By topping up our oil tank.  By giving us generous monetary gifts.  We will be forever humbled and grateful for those peoples kindness. I have learned that people want to help but don't often know how.  Here' s how...

I have a friend who has been fighting her own monster this past year.  With her permission I share her personal (private) blog.  Her story is different than mine but also similar in so many ways. I ask you to read it with an open heart and mind.  Please think about her and her message.  I am so proud of her and the courage it took to write so honestly.  This is Daniela 's story. 

After Ablation...

While laying on a small couch around 2am watching B sleep I was suddenly surprised with how tall he was.  Really surprised. When did he get so big?  I knew he was growing because he just got new shoes and they were two sizes bigger than the ones purchased in October.  Plus every time he sees his Grandma Janet he measures himself against her; its like a right of passage to surpass her 5' status.  But as he lay in his hospital bed, softly snoring,  hooked to an IV pole, ECG and various other machines he was suddenly a young man and not our wee boy anymore.

Over the past five days I have marveled at his quiet confidence and extreme bravery.  No matter what information he was given he listened politely and absorbed what he was hearing.  Even when the news was a dose of harsh reality he remained calm and optimistic.  He asked questions to help himself (us)better understand what was happening and why. When ever he was asked if he would like to participate in a research study to help other children he eagerly agreed. Where did my anxious bundle of energy go?  The boy who bounced non stop through out an entire school year?

John and I couldn't be more proud of B and  we are so very relieved that this part of the journey is over.

So what now....

The accessory pathway was found on the left side of his heart and repaired.  He was monitored closely and received Heparin for about 18 hours to prevent clotting.  He is sore, tired and glad to be home.  He will continue to take Aspirin for the next three months.  The risk of the Aspirin causing a bleed in his brain AVM is very low therefore a must to prevent blood clots in his heart.  In June B will have another ECG and his Cardiologist will make further recommendations.  As it stands in this moment, his broken heart has been mended. 

John and I both want to thank you for the tremendous amount of ongoing support we have received.  We are extremely blessed to have such great friends and family behind us.

Sending much love from the hill and
Happy Spring :)

Where I'm at... this is not a pity party.

For the past 13 years I have worked as a Social Worker, Early Childhood Educator, Parent Support Worker, Developmental Service Worker or a combination of all for four different agencies in my community. I have been a board member, a manager, on the front line and a volunteer. I have worked with and supported a diverse group of people and their families. I have partnered with community groups, agencies and the medical community on a number of different projects.  I am educated. I have always taken pride in putting people before paper work.

 This morning I learned the system is flawed beyond belief.  Maybe I always knew but I hoped I could help change it. Maybe through this experience I still can advocate for change.  Right now I am just frustrated.

In 2011 I worked exactly 18 shifts.  Nine prior to treatment and nine post.  I want to work.  I enjoy working.  I believe I still have a a lot to offer.  My reality is I can not.  I am not well.  It's not safe.  Period.

My other reality is I still have a family, a mortgage and financial obligations.  All the same things I had while I was working.  Fifteen weeks of sick leave through Employment Insurance is long gone.  I have no Long Term Disability through work.  I do not qualify for Ontario Works (municipal) and Ontario Disability Support Program (provincial) because they look at a families income not that of the individual.

Don't get me wrong I value my family above and beyond everything else.  But what happened to Stephanie as the individual?  Why did I contribute to MY to income tax and employment insurance if I can't utilize it when I need it?  I have applied to Canada Pension Plan - Disability and I can expect an answer by APRIL.  So in a nut shell I can't access programs I have contributed to because I belong to a family. My doctors and I have done our part but it will still take up to 24 weeks for the government to approve my claim.  I don't want to even think about the very real possibility that my claim will be denied.

This morning I found out that I do not qualify for my mortgage disability insurance (which I have paid since I was 20 years old) because I haven't had a stroke, yet. Huh. So just to clarify IF I had cancer, a heart attack or already had a stroke, no problem.  But because I can't work due to treatment I have received to prevent a stroke I don't qualify.  Oh, on a brighter side if the doctor tells them I have less than 12 months to live I do qualify! What?!  So now I have added Michelle from TD Financial Insurance Department to the short list of people John needs to call to get help IF I have a stroke.  Fantastic.

The system is flawed.

Now let me tell you what I am grateful for and what I am going to focus on....

• We are happy and healthy (if you don't count my earlier rant and all those acronyms :)
• We have a freezer full of food and I have the skills required to make healthy meals for my family.
• We are warm.
• We have a beautiful home and lots of land with many resources.
• Our bills are paid up to date.
• John is working.  (Feel free to refer him :)
• "Someone" just had furnace oil delivered to our house free of charge because they knew we would need it before the end of the winter.  Thank you...

Sending you gratitude and positive thoughts from the hill.

Steph

Resolutions for 2012; the short list...

It is customary to start each new year with a resolution to make life even better than the year before.  I have several ...

• To breathe deeper and more often.  Practice yoga and meditation daily.  I often catch myself holding my breath.  The more oxygen in my blood the quicker I will heal.
• To take time to appreciate where I am at and not worry so much about where I am going and how I'm going to get there.
• To move more with purpose.  I will not let fear (of dying, having a stroke or injuring myself) stand in the way. Snowshoes are going on today for the first time this season.
• To continue eating for my blood type and cook more for me.  Wheat and dairy are not a part of my diet. Gluten Free cake anyone?? Maybe I will try a new recipe each week.  
• On the same note I should really try and remember to eat.  Sounds ridiculous but I forget - often.
• To use my giant dosset box to help me to remember to take my pills and vitamins.  Even though I feel like a 90 year old woman when I fill it, I will not let my pride get in the way.  
• To regularly learn something new.  I am a constant student and love taking courses. I have come to realize that I am just as satisfied learning a new skill as taking a course. (Huge eye opener and it costs much less)  My first project of the year will be to make soap.
• To read for pleasure again.  Even though it is extremely hard.
• To continue to expand our small farm, BLACKberry Fields.  I have a FB fan page; you should like it :)
• To be more forgiving of myself and others.  I have high standards for myself and sometimes that carries unnecessarily to others in my life.
• To continue to advocate for myself and what is right for me and mine.  I have read the studies and statistics and they do not apply. I am the expert on me.

Thank you, thank you, thank you... and a brief update

As the year comes to an end it only seems appropriate that I thank those who have stood by me (us) on this leg of our adventure.

John - always John.  For everything.  There are not enough words to tell you how truly wonderful this man is. 

A, B and D - They are my reason for being now and always.  They are the reason I chose to have treatment.  I will continue to fight and get well for them.  On the days that it's easier to give up they are the reason I get up and keep going.

Mom, Dad and Jess - Thank you for your love, patience and forgiving me when I don't answer the phone.

Jess B. - Thank you for having a sense of humour, taking me on road trips, trying on hats, keeping me in check and supplied with cake.  Thank you for keeping me a part of the team at work; you really have no idea how important this is for my mental health.  Thank you for keeping it real.

Thank you to Binky and Mel who got me through the first part of this journey and Holly who jumped on board 6 months in.  It mean so much to have people in my life who live it and understand it.

Thank you to many friends who call, visit, ask questions, bring food, flowers, treats and offer rides.  Thank you for the emails, messages and words of encouragement. Thank you for looking after our pets and occasionally our children ;) Thank you again for contributing to my Gamma Music Playlist which I still draw strength from.  Thank you for understanding when I decline invitations; I want to be with you but I know my limits.  Thank you for your patience and love. (I would list you all but then if I left someone out I would feel terrible and you know who you are).

Thank you to the amazing teaching staff and educational assistants at Stuart Baker E.S. and J.D.H.E.S..  I have really stepped back this year and I wouldn't have been able to without their support, diligence and love of my children.  It has lightened my load considerably knowing that all three are being both educated and nurtured at school.

Thank you to my colleagues, management and board members at Community Living Haliburton County who helped us pay for Christmas.  Thank you again to Jess for raising awareness.

Thank you to those who have sent us money and gift cards.  I was trying to think of a better way to say that but to be honest it is what it is.  We are grateful beyond words. 

Thank you to our community for supporting our small business(s) BLACKberry Fields and John Black Carpentry. Thank you for purchasing our eggs, chickens, preserves, blankets, hats and scarves.  Thank you for  understanding when John takes time away from your project to be with us at medical appointments.

We are still at the beginning of this adventure but we are optimistic about the outcome.

I had an MRI on the 21st of December and though we still can't see my AVM due to tremendous swelling. The swelling is beginning to dissipate but slowly.  The hope is once the swelling goes down the side effects will also settle down.  I continue to alter my diet to help with inflammation.  I continue to sleep, a lot. Next brain MRI is scheduled for June and hopefully we will see my AVM and a reduction of blood flow too and from it.  Long term goal is still June 2013 to be AVM free.  Thank you for trying to understand what a very long process this is.  My seizures appear to be under control but I am far from well.  I'm trying.

We are continuing to run tests on my funky heart BUT my brain is still taking top priority.  I have not asked or want a formal diagnosis.  My Cardiologist respects this choice.  My medical team in Toronto is amazing - I thank them as well - and are only an email away if I need them.

B is scheduled for heart ablation surgery on March 19th.  After speaking with his Cardiologist last week we are confident we are making the right decision and the risk of complication is low.  His Neurologist supports this decision.

Thank you, thank you, thank you.  Sending you much love from the hill.


Steph

Reflecting on a year...

One year ago I had my first CTScan.
One year ago I got the news that something was wrong; very, very wrong. 
One year ago John and I kept a huge secret from our family and friends.
One year ago we thought, believed and prepared for the worse.
One year ago I cried so many tears, lived in fear and suffered silently with John by my side.

Six months ago I had Gamma Knife Radiostatic Surgery.
Six months ago we knew something was wrong but we had a plan to fight.
Six months ago our friends and family rallied around us and gave us their love, support and strength.
Six months ago I had hope and was optimistic about the future.
Six months ago I still cried, was less fearful and talked a lot, to anyone who would listen, about my rare disorder with John by my side.

Today I am a survivor.  I have obstacles and side effects but I am a survivor.
Today I am still me. Authentically me.  A little dented and damaged but never broken.
Today I surround myself with the most amazing people.  I am truly blessed.
Today I continue to be prepared, I still have hope and the future looks a bit brighter.
Today I have fewer tears and less fear.  I continue to advocate for myself, and now our son, with John always by my side.

Thank you for your many random acts of kindness, thoughts, prayers and generosity.  You know who you are and we as a family will always be grateful.

Conversations with myself....

I have been asked several times lately about how my friends, family and community has supported me on this medical adventure.  I have been asked if people have offered to help.  Always.  I have been asked if we have accepted help.  Sometimes. I have been asked if people have let me down. Yes.  I have been asked if some people have surprised me with their kindness.  Absolutely. 

So many questions has got me thinking - again.  This morning while doing my regular daily chores I wrote a blog in my head. The blog that I want to write now is completely different than what I wanted to say this morning.

This mornings conversation with myself...

Sometimes I am sad, angry and frustrated (5%) ...

• I long for people who choose not to be apart of my life.  I know logically that this is their issue not a reflection of me but I miss them more than words.
• I miss my Grandmother who passed away four years ago.  Maybe I didn't grieve as much as I needed to at the time but I would do anything to watch her knit, help her bake butter tarts or have her "Bless my little heart" just one more time. 
• I am hurt by my family who has all but ignored the severity of my medical condition let alone acknowledged that of our sons.  Nothing can be compared to what we are facing nor can it be minimized.  I am equally sadden that virtual strangers want to be a part of our lives and help us but the people who should stand by you know matter what have disappeared.
• I hate when people ask questions but don't actually listen or try and comprehend the answer.  I hate it more when they ask again...and again.

This afternoons conversation with myself...

We are so blessed (95%) ...

• We have some of the most amazing friends.  Today I spent the morning chatting and giggling with two of the finest while decorating Christmas trees decorations. Thank you Lisa and Jess - I love you both so much.
• Not a day goes by without a message or telephone call from someone who genuinely cares about how we all are. I have reconnected with some friends who have been so wonderfully supportive.  More than they even know.
• I have met fellow AVM survivors who get it - really get it.  They understand the emotions because they live it with me.  My life is better with them in it; and to think we could have remained strangers is unthinkable. Thank you Mel, Binky and Holly for being apart of this journey.  I can't wait for our AVM free party :)
• We live in a wonderful community.  Not once but twice this week food has shown up unannounced at our door.  Neighbours regularly offer rides and support our small farm by purchasing preserves and eggs. Some peoples generosity has been extremely humbling and you can be assured we will pay it forward as soon as we are able.
•  I have a wonderful mother and father who love us, show enough concern but also give enough space - (Thank you xo) They are always willing/able to care for their grandchildren and our many, many, many animals.
• John and I share three of the most incredible children. Each of them uniquely funny, smart, creative and resilient in their own special way.
• I am so incredibly fortunate to have John's love and support.  There are no words to express my love for this man.
• Then there are people like our friend Erin who asks question because she wants to understand and wants you to understand.  This is the gift she gave to me to share with you.  An article she wrote about our adventure so far - Thank you Erin