Searching for Stephanie

Runaway Train

2016-05-10T10:55:00.002-04:00

Sometimes I feel like my brain is a train traveling on a track. Going so fast; it can't possibly stop. Random images pass the windows of my mind like blurs. I try to catch them but they are traveling much too fast. Thoughts I want to grab hold of and think through to completion, if only the train would slow down just for a little while. It's just moving much too fast.

Today I am reclaiming my blog as a means to collect my thoughts.

We have dedicated the summer of 2016 to slow. Well I did. My family seems to be falling in line with my thinking. I am sure they don't really care and John will enjoy the break. I am not sure what that means for BLACKberry Fields long term but this year it means no roasting chickens, no pigs. No stringing fence and counting cows for other people. No bottle feeding orphan lambs. Good thing my brother-in-law and sister just opened the new butcher shop in town right?

I want to focus on reclaiming our home. Getting rid of the clutter and unnecessary things we have collected over the years. We have too much stuff. To many things to crowd our space. I find it suffocating. I long for simple. Perhaps simple will help quiet my mind.

I started when John's Dad moved out for the second and final time in a year. Never again will I be displaced from my bedroom. Our space. Never again will I disrupt my family and our home.

We have started reclaiming our yard. Last summer our goats left. Energy, time and money forced us (me) to sell our small herd. Though I can't say I regret the experience because I truly loved having goats, there was a significant amount of loss. Our family really can't deal with much more grief.

This summer we have laying hens and ducks. I am satisfied with that. I can work on my gardens as energy allows because lets face it that's where I am truly the happiest. My hands and feet in the cool earth.

WE can continue to clean up the yard and what the goats destroyed. Replant some fruit trees.

Slowly we can reclaim John's shop and the trailer. Perhaps build a harvest table. He can remember what he use to enjoy.

Sending love and light from the hill.

Today I needed to write

2015-01-31T13:52:00.001-05:00

Every now and then I feel the overwhelming need to write. Word vomit everything that is currently stirring around in my brain. Someday I plan to really write. Put our entire story into print but for now I just need to unload.

June 2014 marked my three year post Gamma appointment. It was suppose to be the appointment that told all. Was I going to actually be AVM free? John and I arrived as usual early in the morning. I had my MRI and was promptly seen by an unknown Neurosurgeon. My regular surgeons were both absent. He told me basically nothing. They still couldn’t see the AVM because of my “Gamma Footprint”. He suggested that I follow up with a cerebral angiogram but we agreed it could wait until year four.

I left the appointment feeling somewhat defeated. This new team member couldn’t answer any of my questions. He had no explanation of why I feel so poorly. Why my bad days out number my good. It felt like a waste of a trip.

A couple of weeks after that appointment I received a referral to a different vascular neurosurgeon at a different hospital. The mystery was who had sent the referral in. It wasn’t the Gamma Clinic. It wasn’t my family physician.

It took a team effort but we discovered it was Dr. C, one of my original surgeons. The question remained why. I had not seen him in almost a year. The answer came six months later in the form of an email from his assistant. (Not kidding. She must have been really busy).

“The reason for the referral to the Neurovascular clinic was because the last MRI you had said that the AVM was gone, so Dr. Cusimano wanted to confirm that with an angiogram. The angiogram should be done at St. Michael’s.”

Well that’s ironic. I was told it couldn’t be seen because of the footprint by the new guy. I actually called him on the phone to confirm that. Besides I can still hear it.

Now don’t get me wrong. I want the little monster gone but there seems to be some conflicting information. I decided ultimately to wait until the four year mark to have a MRI and angiogram at the new hospital and new doctor. I don’t really feel up to having anyone poke around in my brain right now. Thanks but no thanks.

Let’s talk side effects.

John tells me I have more bad days than good ones. I believe him because he is my memory.

I get the basics done. Feed animals, do the laundry, try to feed the family. My personal care suffers sometimes. I try to keep medicated. It’s worse when I forget to take my meds, as to be expected.

It’s not that I don’t want to do things. Sometimes outside forces get in the way (I will tell you about that in a minute.) Sometimes the sheer amount that needs to be done is too overwhelming and I get stuck. You know? I would rather do nothing than take on the challenge. Sometimes I am simply too exhausted.

I sleep a lot but it’s never enough. My sleep is broken into tiny chunks of time. It is rarely restful.

The more tired I am the more side effects I have. I end up stumbling words, talking nonsense, hallucinating and have lots of tears.

One of the most important things I was told when I was diagnosed with an AVM and subsequently diagnosed with a brain injury post Gamma was, “You must control your environment.” That’s great in theory but not so easy to practice when the universe keeps screwing with us.

How you ask? Let me give you a condensed version. I will save the rest for my book.

At the beginning of the school year one of our children was threatened daily by another student. He told her the details for how he planned to kill her and stalked her around the school for 10 days. When he was confronted he claimed she was harassing him. He was quickly discredited, disciplined and allowed to carry on as if nothing happened. I spoke to the school, the school board, police, therapists, counselors, and a lawyer almost daily for eight weeks. In the course of a couple of weeks our daughter became a statistic and had to learn to navigate the world differently. It shouldn’t be that way but it is.

We had to put our beloved dog Spirit to sleep after suffering for more than a year with a brain tumor. She and I shared anticonvulsants for most of that year. Her last day was spent eating too many cookies and going for a huge walk with the kids and I. Her ashes keep me company in my office.

We have a farm!! There are lots of joys of owning a farm but it’s also a tremendous amount of work. Chicken, cows and pigs all had to be sent for processing. Customers are always coming and going. Daily chores. Weekly chores. Picking up feed. The end of the season chores that never really ever get completely done but we will wish in the spring they did.

In November wee Moose died. He is the reason we have goats. The little goat we welcomed into the world in February 2013 who wouldn't have survived without John’s intervention. Moose had a deformed hind leg, a grade V heart arrhythmia and was given the life expectancy of a week. Well he proved the world wrong and we all fell more deeply in love with him. His loss was painful for all of us but especially John.

Speaking of John keep in mind he works full time away from the house and teaches Karate two nights a week. He is the grocery shopper, the driver, the errand runner. He is an only child with no siblings to rely on and my only constant support.

Because our life isn’t exciting enough we took on renovating three bedrooms and working on the final stages of completing our family room downstairs.

I also decided to start a small home based business because… I have no idea. It seemed like a good idea.

On Christmas Eve John’s Dad was admitted to the hospital. He spent a couple of days but he probably should have never been released.

I went through Christmas on autopilot. I remember almost nothing.

On December 28^th my own Father was airlifted to an Intensive Care Unit in a city about 1 ½ hours away with complications of pneumonia. For two weeks we weren’t sure what the outcome would be. At four weeks he returned home and is slowly recovering. He and my Mom are discovering a new normal.

While he was away everyone in our house became sick with a never ending cold. It just cycles around and around. Maybe it’s because we were hanging out in hospitals so much.

Did I tell you that two of our children just finished exams? The other one missed a week of school because of this dreadful cold?

Did I say that our son has decided to take charge of his education and do some major self advocacy? As I have always been the one to advocate for him this role reversal is very scary for me.

Did I mention our goats are all pregnant and Lizzy had a miscarriage last Sunday?

In the meantime John’s Dad was rushed by ambulance back to the hospital on Monday where he still is today.

John has been juggling all his own responsibilities as well as looking after his fathers. Only to add to his stress I had a small nervous breakdown. Not because I chose to. I like pretending to be strong. I fell apart because one can only be so strong for so long without losing it. My brain injury supports this hypothesis.

On Tuesday night John tucked me into bed before he left for the night and told me he needed me to be okay. He needed me to stay in bed, sleep away the pain and just be okay.

Today I am.

The pain has lifted a little.

I can think clearer.

I needed to write.

Apathy

2015-01-24T09:05:00.001-05:00

Apathy is defined as a lack of feeling, emotion, or interest. It is a state of indifference, or the suppression of emotions such as excitement, motivation, and/or passion.

It is also one of the most challenging things I struggle with daily. A lingering side effect of my brain injury.

It is fleeting. I could be super excited to do, create or make something but when it... comes time to actually execute the plan I am stuck. I want to but I really can't. I am physically unable to carry though without support. I need a cheering section to keep me motivated and on task. My cheering section isn't often here.

Having a small working farm/homestead forces me to get out of bed everyday because I have animals waiting for me. They don't prevent me from returning to bed by noon though.

I use to be super excited about my perennial gardens. That is what actually prompted this post. I was looking at flowers on Pinterest.

I took pride in my extensive gardens and they were beautiful. Were is the key word. The last few years I just couldn't. I start, then I can't follow through. In the grand scheme of things on a farm, the perennial beds are very low priority. But they bring me joy.

I want to garden again. I love gardening. Alone. Without support by reluctant volunteers.

Maybe this year.

An anniversary of sorts

2014-12-10T20:31:00.002-05:00

Here we are at the four year mark.
The headache that determined the course of the rest of our lives.
Hearing the fear in both Dr Fiddler and Dr Gammons voices.
The secrets and the faking it through the holiday season and beyond.
The beginning of test after test....
The beginning of having doctor after doctor shocked that I survived three births without having a stroke.
The beginning of having to explain over and over again the impossible to everyone.
The beginning of the catch phrase, "ticking time bomb."
The beginning of preparing for the worse and hoping against the odds for the best.
The beginning of many untruths.
The beginning of "new normal."

The only thing that has been consistently solid is my five and for them I am grateful.
My family looks different.
My friends are different.
I often completely forget about my three years at CLHC and skip back to OEYC and the relationships that got a foot hold there.
My short term memory is not intact. I'm missing some (many) of the details but it's easy to remember how people have made me feel.

Closing a Chapter

2013-07-12T09:57:00.001-04:00

When I started this blog I did it with the intention of keeping my family and friends current on my medical situation. It was going to be my online journal. I also thought it would help raise AVM awareness.

What really happened was people no longer had to actually communicate with me or John because I laid everything out so nicely here on the interweb. People who I thought would be by my side always made light of the severity of my illness or disappeared completely. Others did not and for them I am eternally grateful. I have also made some wonderful new friends along the way.

So though I haven't posted in some time I decided it was appropriate to have a final entry.
It has been two years since I received Gamma Knife Surgery. My AVM is still active. I am still at risk of stroke. I have permanent brain damage from the radiation and a seizure disorder. I no longer drive. I no longer work away from home. WE have HHT.

My friend Rachael has a sign at her farm that reads;
"When life hands you lemons trade them in for goats."
That's exactly what we did.
You can follow our adventures in farming here.

Sending love and light from the hill.

Stephanie

More late breaking medical news...

2013-01-17T12:17:00.000-05:00

Last Sunday we left our cozy home on the hill at 4am and drove three hours to Toronto so Brenden could have his annual MRI. The purpose of the MRI is to monitor the lesions (yes more than one) in his brain. Of the three known lesions there is one "of interest" in the left frontal lobe. The same place my AVM aka Monster lives.

We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel. By the time 9pm hit all three children were exhausted from our very early start.

On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him. Yes, he really said that. The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment. He is also being scheduled for an EEG to check for the possibility of seizure activity.

Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT. If you want some quick facts about HHT click here. I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases. I, thankfully, did not present any more than the one in my brain. Brenden is known to have one in his nose and one in his mouth. His heart is clear. We know that because his cardiologist did an echo bubble study before heart surgery last spring. His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.

I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare. For both of us to have one without HHT would be extraordinary. HHT is uncommon but not rare. Telangiectases are basically an abnormal connection between small arteries and veins. They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death.

After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion. If they do not have it then their children will not inherit it. If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.

Every family with HHT is unique and it often goes completely undiagnosed generation after generation.

So what does all of this really mean?

More waiting. More questions. More living.

Sending love from the hill.

Steph

two of 52

2013-01-14T21:08:00.000-05:00

John returned to work after two weeks home.
All three children returned to school.
I slowly begin to tame the chaos of our home.
I have grand plans to start taking better care of me.
Not side effect management but real, genuine care.

Here's a snap shot of week 2 of 52.

We have restored bedtimes routines that include hang man and shadow puppets.

The cats are frisky and mischievous being stuck indoors.

I often find them sitting on stools at the island watching me cook. Weird.

We have an extra friendly squirrel that regularly taunts the dogs.

I continue to prepare real meals with real food which we eat at a real table.

I am continually surprised that this is not "normal" for some families.

We took an "educational trip" to the Science Centre with

typical Black Family twisted sense of humor...

We enjoyed the pool all alone. That never happens here.

And as always -

More waiting. More questions. Few answers.

Sending love from the hill.

Steph

one of 52

2013-01-06T20:09:00.001-05:00

Inspired by my lovely friend Erin of Feather + Anchor Photography I have decided to photo document the goodness and simplicity in our lives. The moments that keep us full of awesome and sane. It's challenging being a Monster fighter(s) but our lives are pretty wonderful just the same.

Of course I am not so disciplined that I could commit to blogging daily, so weekly it shall be.

Here is a glimpse of week one of 52...

We made a family/farm plan for the year and beyond on a giant vision board.

Thinking and dreaming big. Sustainable. Forever.

We started up a small aquaponics system in the kitchen to experiment before we try anything on a larger scale in the green house. A vermicomposter has also taken up residence. Hello red wigglers.

We juiced daily, cooked real food, baked bread, cookies and muffins.

We drank lots of tea and hot cocoa out of carefully crafted mugs.

We played silly games. Repeatedly.

I ~~finally~~ finished The Hunger Games series. I had to read the third book twice.

We snuggled on the couch. Frequently. All of us.

Sending love from the hill.

Steph

Farewell 2012 /Welcome 2013

2012-12-31T13:41:00.003-05:00

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.

2012-12-23T07:34:00.001-05:00

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?

2012-11-05T09:43:00.001-05:00

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...

2012-11-03T16:45:00.001-04:00

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

2012-10-11T19:34:00.000-04:00

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...

2012-10-09T18:49:00.001-04:00

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

2012-10-08T15:42:00.002-04:00

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)

Coping Techniques - AVM Style

2012-08-11T11:31:00.003-04:00

My family is pretty open. We talk, a lot, about everything.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience.
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months. We still have a long ways to go.

I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability. We talk about my symptoms and side effects regularly. We have plans in place in the event of an emergency.

What we haven't talked about much is how it's effecting them.

Obviously there has been an impact. I know longer drive so I can't always be or get to where we need/want to be. I know longer work so there is less income. It also means that John is working more. I am home all the time and that has pros and cons. I can't always be mentally or physically available to them like I have been or would like to be. When they are in school it is less noticeable. We compensate and juggle the best we can but we are not always successful. There is lots of planning and little spontaneity.

So this week I took an opportunity to find out whats going on with them. How they are really feeling. What came out was they are afraid. Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown. I'm afraid too.

What also became evident was how they are coping with their fears.

Humor was at the top of the list closely followed by sarcasm. That makes sense considering that's exactly how John and I are coping. I personally feel that this is a great coping skill. When life doesn't make sense and there are no answers joke about it. It can't hurt.

Avoidance - Admittedly our children missed a lot of school last year. Some days it was just easier for them to be home. I understand because I sometimes avoid social situations as well. D chose not to participate in some of her favourite extra curricular activities. At the time we accepted it but now I realize that she was avoiding people. D and I are often alone together in public. We often get stopped and people want to know the ins and outs of my medical status. They often ask personal questions and I often respond. She was tired of it and opted out.

Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up. B and I both have very rare serious disorders. When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen. We also have so much more work to do when it comes to further medical testing. My job is to put their mind at ease. Headaches could be from lack of sleep or not drinking enough water. Chest pains could be feeling worried or anxious about something.

Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.

After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears. At no time do I under mind their fear or tell them not to be afraid. This is scary.

- We still social story almost everything. It's a useful techniques for all children not just the exceptional. If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health. We listen to their physical complaints and concerns. We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine. Everyone has regular chores and responsibilities.
- We have down time to play and relax.
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it.
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.

Stages of Grief - The AVM Edition

2012-08-03T09:00:00.001-04:00

I spoke with my friend Angie on the phone last night. I enjoy talking to her. She always makes me feel like my opinion and thoughts matter. That I am valued and important to her.

We chatted about family, her current work project (very exciting) and as always food, farming and sustainability. When our conversation rolled around to my current state of health she asked me an important question. "Are you angry?" Nobody ever asks me how I "feel" emotionally. Everyone wants information about my side effects. Like they have something to compare them too??

I am sure most people are familiar with the stages of grief. I think that is how I can best explain what I feel. Keep in mind that its not a brief visit to each step. I am constantly climbing up and down through the stages because that's my life.

Denial - What AVM? What brain surgery?

Denial is a useful coping technique especially in public but it is not terribly sustainable. I am a terrific actress. I can pretend all is well when I need to. Most of the time my body and brain won't betray me. I'm well medicated when the event calls for it. Denial is usually very short lived because I can't ignore reality more than an evening.

Anger - Why me? Why now? What if?

Am I angry? Yes. All the time? No. It ebbs and flows. It is often hormone driven. I will always wonder what if I never knew? What if I had never had surgery? How life would be different if ....
I get angry with the medical community for playing down the severity and risks associated with my AVM and treatment. I get angry at myself for acting in fear. I get angry at friends and family who either pretend nothing has changed or offer false hope.

Bargaining - Dear God...

My relationship with God is private but I will say I speak to him much more often these days.

Depression - Why bother? I give up!

It would be very easy for me to slip into a very dark place. I stand on the edge of it often. My family has a long history of poor mental health. It would be a very short step to disconnect from the world. I am already isolated and have lost my freedom and independence.
I am fortunate that I am very self aware. I am able to pull myself back because I understand that it's completely normal to be sad, regretful and fear of the unknown. Experiencing and really feeling these emotions are how you get to the final stage of grief.

Acceptance - It's going to be okay. I will make the most of each day.

I can confidently say I am getting use to my new normal. Do I wish it was different? Absolutely, but there is more peace now. I really do enjoy having a farm. If I hadn't been diagnosed we wouldn't be here - yet. I do not miss my previous job, but I do miss the people. I have a deeper appreciation for my community and my role in it than I did before. I value my relationships with friends and family more.

Acceptance doesn't mean I have to love it. It just means that I can accept the reality of the situation and have the courage to move forward.

Dropping an acronym and other medical news...

2012-07-20T07:29:00.001-04:00

Wednesday was clinic day for both Brenden and I. I had postponed both of our appointments to July to help ease some of the craziness surrounding the previous month. John and I have the trip down to a fine science as our confidence grows regularly travelling to, around and from Toronto. Who knew?

This week we are pleased to share that B is no longer a heart patient. Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare. He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome. Thus dropping WPW from the long list of acronyms that follow our names.

It has been absolutely amazing to watch this young man change before our eyes. He has become so much more active, strong and confident since surgery. We are very proud of him. We celebrated with a cake.

My Neurology appointment marked my one year anniversary of Gamma Knife Surgery. Dr. S was positively beaming when he seen me. As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM. It appears to be working therefore the clinic can claim success. The draining vein is occluding and eventually will seal off completely destroying the AVM. When the AVM dies my risk of stroke diminishes. That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.

When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."

Why am I losing my vision in my left eye?
Why am I still having so many seizures (daily in varying degrees)?
Why are they changing from partial focal to absent?
Why are the seizures starting to cross the mid line?
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia? (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side?
When will it start to get better???

"I don't know." Dr. S

Is there going to be permanent brain damage? Sadly, yes from radiation. Approximately 1 cm around the AVM in my left frontal lobe. How significant, we don't know. Once brain cells die they can not regenerate; it's forever. Yet the brain has an amazing ability to make accommodations. Will the seizures ever stop? We don't know, hopefully. We are optimistic that they will be better controlled by medication eventually.

In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic. Will I be looking for a new job anytime in the near future? No.

Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.

June Highlights

2012-06-28T12:30:00.000-04:00

So it isn't a secret to most that I was not looking forward to the month of June.

June tends to be rather busy here and every other household who has school age children.
I have personally been dreading it since about April.
Why schools pack in every possible opportunity into the last four weeks baffles me.
Don't get me wrong, I'm glad our children have gotten to experience so many wonderful class trips and extra special days but why not try spreading them out through the year.
We can fly kites in October. Visit Ottawa in May. Make scrapbooks all year long.

But look here it is the end of the month and we all survived.
John knew it was possible and I need to learn to never doubt him.
I will be starting July in spoon deprivation but I am optimistic.
I can now release the breath I have been holding.

Here are our highlights...

Building BLACKberry Fields and John Black Carpentry

Amy preforms in the Heritage Ballet Spring Recital

Dana at her first Track and Field Meet in Haliburton

Amy and Brenden receive their brown belts in Karate

Amy on the low ropes at Pinecrest YMCA camp

Brenden visits our nations capital

Dana visits Settlers Village

Brenden Graduates the DARE program at JDHES

Amy Graduates grade 8 from JDHES

Dana's last day ever at SBES

This family welcomes the summer holidays...

PS if you are not familar with The Spoon Theory click the link above. It will help you understand what it really feels like to live with an invisible illness.

The story we tell ourselves...

2012-06-22T07:58:00.000-04:00

"We are each the story we tell ourselves."
I'm not sure when I first heard that sentence but it rings true to me in so many ways.
If a person tells them self the same mantra over and over again,
it becomes their truth and the story they tell others.
If I tell myself I am ill then I live like I am ill.
If I tell myself to live to the best of my ability,
I have a much more positive outlook each day.

I remember much of my past and I am living my present.
Sometimes I am told stories of my youth by others.
I always find it interesting to listen to their recollection of shared experiences.
Our different perceptions of childhood and high school.
I am lucky because John shares many of my memories.
If someone makes a statement that doesn't mesh with my memory,
John can often fill in the holes or help clarify their personal spin.

As our daughter leaves behind elementary school and enters high school,
I am reminded of my own personal history and the transition from little to big.
Some friendships, that were important in public school, solidified in high school.
While others were left behind. Some with regret and others with a sigh of relief.
Boys who once were coveted and fought over were forgotten.
Others boys, who were largely unnoticed or unknown, became exciting and intriguing.
New friendships were forged based on common interests and beliefs.
Past problems and disagreements were largely forgotten for they no longer held relevance.

As I grew older and presumably wiser I began to treasure the people who were important to me.
People who treated me like my goals, dreams and beliefs were important to them.
I let go of the people who no longer felt connected to. Not with malice just a farewell.
I have been very blessed with so many wonderful friendships over my lifetime.
Some brief, some permanent but all important for the lessons they taught me.

I recently had dinner with some of my favourite families.
We each come from completely different places but connect perfectly.
Together we can laugh, talk, debate and genuinely enjoy each other.
Children, health, food, community and friendship bring and keep us together.
Each of us telling a similar story.

Balance - Stephanie VS The Monster

2012-06-18T10:17:00.005-04:00

There is so much I want to do. There is so much I need to do.
We are building our farm, BLACKberry Fields much quicker than I ever imagined.
The timing was right and we have to go with it.
I am organizing and reorganizing a household with three very busy children.
The month of June has been absolutely insane. Maybe thats why I feel like I am struggling so much.
I am trying to help John with his ever growing business, John Black Carpentry
I try but sometimes I'm not very successful or helpful.
When I work hard and complete tasks it gives me a great sense of accomplishment.
My soul and spirit needs that. My sanity needs that.
After several days of success I can be guaranteed several days of forced rest.
Balance

My monster has its own, very different agenda.

It likes to keep me awake with a constant woosh in my head.
If it doesn't get my attention right away it only gets louder.
It limits the use of my right arm and sometime leg so even small tasks take so much longer.
At times it makes it difficult to read, focus or string a sentence together.
Sometimes I can hear a person talking but I don't comprehend the words or their meaning; as if they are speaking in a different language.
It is a constant dull ache on the left side and sharp stabbing pains the right side of my brain.
Just when I think the monster is at rest is rattles my body with a seizure or quite literally knocks me out for a few hours.
Balance

This week is my one year anniversary of Gamma Knife Surgery. Yesterday I had another MRI to get some good images of the AVM/Monster. We are looking to see if the edema has dissipated and at the integrity of the vessels running to and from the AVM. Regardless of what the images show and the prognosis, I know how I feel. I'm just looking for the balance.

Living history

2012-05-18T15:23:00.001-04:00

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

2012-05-02T09:52:00.002-04:00

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.

Redefining my role

2012-04-30T09:50:00.001-04:00

I have a restless soul. I am rarely at peace with myself. I would to like blame it on the monster but that would be a lie. It is simply who I am. Having so much time alone in my head just heightens my awareness. I recently find myself circling. Thinking a little too much.

Metaphorically, I have never been one to sit around and watch paint dry. I'm always ready to start the next project. I never sit back and admire my work. Relishing in success. Patience has never been my strong suit as I always continue moving forward - dreaming, planning, creating, doing.

When my babies were small I didn't just babysit. I ran a home business and a very successful community playgroup. Always needing to do a little bit more. That role led me to a career working with families.

I have volunteered countless hours, sat on boards and worked for and with several non-profit agencies. I was never just an employee though. I had to know everything. If I was going to attach my name to a position I was going to excel at it. Be an expert.

I have always been a student. In fact, this is the first time in my adult life that I have not been actively enrolled in school. No papers to write, no assignments to complete and no exams to study for. No professor to sign off on the A+.

This is also the first time in many years I have not been an employee. No time lines, deadlines or accountability. No performance appraisal to tell me I'm on the right track and doing a good job. It is a odd feeling.

As I circle inside my head I wonder if my drive, determination, need to succeed has led me to this moment. If all the hours I have invested into others in my community has taught me the skills I will need to be successful - in my recovery and here at home. If this has been the bigger plan all along?

I need to to continue to heal. My seizures are still active but strangely I am getting use to them. I budget time for them and my recovery everyday. My new normal forces me to stop - literally. Patience is a must. I can't rush recovery. The monster has it's own agenda and I'm not privy to it.

We are building a homestead and creating a plan for sustainability. There is always much work to do. Research, planning, doing...

As I continue to circle I will redefine my role... figure out who I am.

Letting go...work

2012-04-25T08:35:00.001-04:00

In an attempt to gain some control in my life I need to make some changes.

I handed in my resignation at work. I didn't have to. I chose to.

I have been on a leave of absence since the monster in my brain took hold, rattling it regularly with seizures. I had planned to go back once things settled down medically but I had a moment of true clarity. I realized that as long as I had a timeline of when I was to return I was going to remain unwell.

As a Social Worker I have never left work and simply flipped the switch and forgot about every interaction I had through out the day. Maybe some do - I do not. Every person I have ever worked with has had an impact on me. I think about them, their needs, their dreams, how I and we as a community could do more.   Core competencies, best practice and developmentally appropriate are a part of my regular vernacular. Talk to me sometime and you will know this to be true.

It is ridiculous to believe that while I was on a leave of absence that I stopped caring about the people I have supported. That I was unaware of what was happening in my own community. When you live and work in a small town everything is under a microscope. I didn't seek out information; it was either completely visible or brought to my attention by a concerned community member. So though I was away I continued to care, have opinions and advocate.

Now I choose to hand back that responsibility and privilege.

A reminder from my Inner Pirate...

The swelling in my brain has left me with temporary aphasia, a communication disorder.
It does not effect my intelligence.
Don't talk to me, at me or about me like I am stupid.
Furthermore, I remember what confidentiality and in confidence means and I still practice it.
I wish the same respect be extended to me.