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