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.

Happy 18 months to me and holiday wrap up.

Yesterday I received a message from a friend of a friend.
It was completely unexpected that he even remembered but totally awesome that someone gets it.
It read, "Happy surviving 18 months of shit getting real."

December 22nd was not only my totally fantastic husbands John's 40th Birthday (HAPPY BIRTHDAY!!!) but also the monster and my 18 month post Gamma anniversary.

John and I  finished our Christmas shopping in the morning. The kids made cupcakes for their Dad while we were out. The monster and I celebrated during the afternoon with ear plugs, ice, Tylenol and a nap (read small coma).  John made his own Birthday dinner because I'm a lousy wife, mother and human when the monster is winning.  Johns Dad visited for celebratory cupcakes and coffee in the evening.  Coffee finally killed the headache and silenced the monster before bed so life is good again this morning.

So whats the big deal with 18 months you ask?
When I signed up for this adventure I was told 100 different things but two are highlighted:

• At 18 months radiation becomes the most active and is working the hardest. I'm assuming that also means that side effects will be working just as hard.  So far that assumption is accurate.
• I have an 80% chance the AVM will occlude by three years therefore18 months also marks the half way mark to goal of being AVM free.

Happy 18 months of shit getting real to me!!

Our entire family is officially on Holidays until January 7th.  A well deserved break for John who has not stopped moving in months (maybe years).  Though there is no such thing as a real vacation when you live on a farm, we will definitely be moving in a much slower pace.

Our family has many goals for 2013 and I am hoping to get some of the vision on paper very soon.
Everything seems more real when it's on paper.
A working work plan, a dream board, a wish list, a Pinterest Board ...
It may read a little like this;

• Design and build a green house - the trusses are already here. Fishy, fishy, fishy to be incorporated.
• Design and build a big barn - the trusses are already here.  Moo, baa, lalala
• Re-fence and electrify the pasture - the fence and wire are already here. 
• Decide where the new chicken coop is going to be - permanently.  And really decide what type of hens I want to live there.  I change my mind on both daily. cluck, cluck, cluck and cock-a-doodle-doo
• Turkeys.... gobble, gobble. gobble.
• Secure some more weaners for early spring. oink, oink, oink.
• Design an orchard that includes more bee hives. buzzzzzzzz 

Dream big, dream bold...

In closing I wish each of you a Merry Christmas and happy holidays.

xo

Whats on my mind?

If you really know me you will know I have very strong opinions.  Having a brain injury, as a result of Gamma not the AVM, hasn't changed that.  However, now my filter is bent and slightly broken so I'm not as tactful as I once was.  Does it bother me?  Occasionally.  Other times not at all.  Some people need to be shook into reality about me, us and whats going on in our community and beyond. 

I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent.  For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.

If I can accurately predict my future I will say you are going to see a lot less public acting on my part.  I am tired of pretending all is well when it is not.  What you won't see is me posting about it on Facebook.  I will still continue to be very active on our BLACKberry Fields fan page and share information.  I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends.  I will still participate with private groups I belong to.

However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?".  Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates.  I am guilty as well.  I have decided I need more.

I intend to be much more active on this blog.  It will be unfiltered so if you really want to know whats on my mind this is where you will need to look.  Keep in mind before you subscribe the following user tips:

• I will run this blog like a monarchy where I reign as queen.  You can comment your opinions as you wish but I will have the last say.  (Refer to my last post about writing my truth.)
• I will write about gender bias and feminism because it is very important to me.
• I will write opinion pieces about parenting because that is what I know.
• I will write about farming and sustainability because that is where we are going.
• I will write about what I really think about the medical community and you may not like it or want to hear it...  It will give you something to think about and then you can seek your own truth.
• I will write about my history and how I got to be who I am.  
• I may ramble because sometimes that's whats happening in my head.

Today is the start of something new.  Welcome.

PS - I also love Pinterest so I hang out there frequently.

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.

The house on the hill

Recently a good friend asked me if we ever thought about moving.  It's a good question.

We live rather rural.  We have neighbours but most of them are seasonal.  The closest, some what adequate, grocery store is at least 15 minutes away.  The kids go to school and participate in dance and karate 30 minutes away.  Shopping and a wider variety of recreational opportunities are an hours drive.  My team of doctors just a three hour road trip.

Still, the answer was pretty simple. No.

Later on, as always, I reflected. 

Why not move? 

Would our life not be so much simpler if we lived closer to the village? a city?
I would no longer be so isolated.
I would regain some independence.
I could walk everywhere and not depend on others to drive me. 
I would be closer to my family and have more access to my friends.
I could take a taxi to the grocery store and local medical appointments.
John would have far less responsibility and burden.

Same question. Same answer - no. 
We would be miserable!

When John and I moved in together, 17 years ago, we began designing floor plans for the house we would someday build.  A lot of thought, time, energy and dreams went into those tentative plans.
Nine years later the foundation was poured.  Today its our reality, our home.

The land we built on is a mix of pasture and forest.  It borders on a a quiet road, more pasture and a large beaver pond.  Today we are still designing floor plans.  This time for green houses, bunkies and barns.  We dream about gardens, aquaponics and turkeys. We talk endlessly about sustainability and homesteading.  Of leaving something behind for future generations.  BLACKberry Fields.

Pretty picture isn't it? 

Even prior to getting sick I claimed to be born in the wrong century.  I love nothing more than hanging laundry on the clothes line, reading a great book, finding a great new recipe and digging in the garden.  I lose time daily watching the chickens and talking to the pigs.  The place is slower but there is still plenty to do.  Lots to keep my brain active and body alive.

I don't deny that moving would make life more convenient sometimes.
However, I don't think we could ever trade quality of life for convenience. 
I have probably said it here before but for the first time  I feel like we are living very authentically. 

I am only as isolated as I want or need to be.
I am still very independent but I have to be more creative in order to achieve it.
Even if I lived in town I wouldn't be able to walk everywhere unless I had a shadow.  It's not safe for me to travel solo in the event I lose the use of my leg or my sight.
I have close friends that live near by. We also have a steady stream of people who visit our little farm to purchase eggs and visit the animals.
Family can find me.
John willingly gets us everywhere we need to go.
We have learned to ask for help when we need to.

This is what real looks like.

If you love me...

If you love me...

• See beyond the humor and sarcasm.
• Be kind to me.  I'm very sensitive.
• Listen to me even when I am hard to understand.  I'm still intelligent.
• Don't assume anything.  You really have no idea unless you are also Monster fighting.
• Please don't compare your experience with mine.  This is like nothing you have ever experienced and it can not be compared to other diseases or disorders.  When you do that it devalues your experience and mine. (I may be repeating myself)
• Know that I am not a text book case study.  Nothing that you have read is even remotely close.  I am real.  My journey is unique to me.
• Don't pretend you understand when you don't.  Ask me questions.
• Be patient.  I can tell when you are not and it hurts my feelings.
• Respect my choices even when you don't agree with them. 
• Support me without conditions or a timeline.
• Love me even when I am not very lovable.
• Be my friend and remember I can still be yours. 
• Acknowledge I have limitations but I try very hard.  Everyday.
• Remember who I once was.  I do.
• Respect who I am now.
• Note I am trying.

I in return will...

• Try harder.
• Be a good friend.  I can still listen. 
• Be patient and respectful of your feelings.
• Try and control my frustration and anger.
• Try extra hard to think before I speak (or type).
• Recognize this is scary and challenging for you too.
• Acknowledge you are doing your best.
• Love you back.

Falling into Fall - Literally

Our children have been back to school for about six weeks.  Everyone is settling nicely into their new schools, classrooms, activities and routines.  I miss their company but I welcome the silence.  It's the first time since becoming a parent I was happy to see my children return to school and it broke my heart to admit it, especially out loud.

During the past six weeks I could have written several blog posts but not one of them would have been nice.  I have heard myself say several times recently that if I don't remain angry then I will start to cry.  If I start to cry I may never stop.  It's a short fall. 

Did you know I spend all day most days alone but its not safe for me to be alone in public?
For a woman who is fiercely independent that is huge.

My brain to mouth filter is broken.  I swear more than a pirate and say what ever, when ever it comes to mind.  My friends accept that and therefore me.  Our children definitely have a more colourful vocabulary but are quick to scold me when required.  At times I am insensitive and unkind to the people I love the most.  I hope they know that is not my intent, ever. 

I apologize (kind of) to the well meaning family member who called and claimed she thought of me often during the past 2 years of zero contact.  I'm glad she was strong enough to accept my response through my blind rage.  I hope she shared my thoughts with other members of the family.  Two things will happen as a result.  I will stop receiving unwanted, guilt dripping telephone calls (too little way too late) and John will start getting the support he so desperately needs and deserves.

** PSA - for anyone who loves someone who is suffering the worse possible thing you can do is tell them you think about them all the time but then never act on those thoughts.  Send a text, email, pick up the phone, tell them you love them - do something. **

I continue to wander from symptom to side effect aimlessly.  Daily seizure activity is normal despite my high dosage of anti-convulsants.  No answers to why or how much longer this will go on are forth coming.  If I ever do have a stroke I will probably never recognize it for what it is because my face and arm are always numb.  The clinic where I received treatment for my AVM appear to be uninterested in my new limitations and abilities. As long as their treatment plan is on track they are pleased.  In an effort to preserve my remaining sanity I have asked my family physician to advocate on my behalf.  Maybe yet another opinion is required.

We have also been in touch with Sick Kids Hospital and a Specialist there will be taking the lead on  HHT testing for our entire family.  I'm tired of waiting for answers but the thought of further trips to the hospital is exhausting.  The thought of more testing, procedures and the 50% possibility of both the girls also having this terrible disorder leaves me paralyzed with fear.

John's mother has recently been diagnosed with brain cancer and has been scheduled for a craniotomy and followed by full brain radiation starting next week.  Once again my husband will sit alone in a hospital waiting for neurosurgeons and radiologists to determine fate of a woman he loves. 

It doesn't seem fare that one man should carry such burden.  He is the strongest man I know. I am grateful everyday he is mine.  Despite more than a year full of frustration, grief and hardship he still carries on without complaint.  He has accomplished so much professionally and here on our farm.  I am so very proud of him.



** John's Mother passed away exactly two months post diagnosis and 1 month after having the tumor removed from her brain. (1/1/13)