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

ASD, AVM, WPW, HHT - our world in acronyms

Our son B is talented, funny and smart.  He loves comics, super heroes and video games. He is genuine, caring and gives the most amazing hugs.  B has Wolffe Parkinson White Syndrome.  He was diagnosed in April 2011 after complaining about a rapid heart beat and severe pain in his chest.  B also has Aspergers Syndrome and rarely, if ever, complains about pain.  At first we thought he may be having anxiety attacks; that makes sense since he has Aspergers. Thankfully we took his complaint seriously and so did his doctor.

We met with a cardiologist in October and decided the best treatment to correct Brenden's accessory pathway is by non invasive Surgical Ablation (not open heart surgery).  Given my diagnosis of an AVM in my brain it was decided that B should also be tested, just in case. 

A couple of weeks ago B had an MRI on his brain and has been scheduled for further testing on his heart and lungs.  On Monday I received a telephone call from Sick Kids Hospital confirming an appointment to follow up with a Neurologist.  I knew that meant one thing... they found something wrong.  On Thursday at a regular pediatrician appointment I read the MRI results myself.  During the MRI it was discovered that B too has an AVM in his left frontal lobe measuring 12mm at the largest point.

Instead of ME having an AVM (congenital, 1% of the population); WE have HHT, Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya). Somehow hearing the worse news ever is so much more devastating when you hear it about your child.

For the past year I have been on an emotional roller coaster ride of questioning, testing, diagnosis, treatment, unpleasant side effects, anger, fear, and hope.  Now I know why...  IF I had never been diagnosed, then we would have had no reason to do further testing on B.  Without further AVM testing his cardiologist would have gone blindly into treatment.  Treatment that could have potentially some very serious risks.

So what now?

• Inform all members of my immediate family.  What they choose to do with this information is up to them.
• Meet with a Neurologist at Sick Kids Hospital on December 5th. See the MRI images and start making a plan.
• Back to Toronto for further testing on B's heart and my brain before Christmas.
• Meet with a my geneticist and a new one who works with children to explore how deep this runs in our family.  Which I am certain will lead to testing of our girls and my parents.
• Remember to breath, live, love and be grateful everyday.

Crafty me

I have been hanging out in the right side of my brain more and more lately; exploring my creative side. My left, logical side, is on strike.  I have always enjoyed crafting but never really set aside much time for it. When I am making something I don't have to think beyond what's in my hand and the next step. There are not going to be any repercussions or consequences of my actions. If I make a mistake or get frustrated, I can stop and try again later.  It took four attempts to crochet my first hat.

Last Saturday I participated in a local Christmas Bazaar - as a vendor. 

 BLACKberry Fields display
West Guilford Community Centre, Christmas Bazaar

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Talk about stepping out of my comfort zone.  Though I have received positive feedback, from my friends and family about our preserves and my "Tied by Me" fleece blankets, it's completely different to put myself out there for the public to see and critique.  Add the fact that I have regular seizures, that are  induced by sensory stimulation.  Seizures that literally leave me speachless.  Thankfully my Grandma was willing and able to come sit by me through out the day, just in case.  (She also taught me a new crochet stitch :)

The bazaar was a success.  I sold many preserves and blankets.  Took orders for Christmas gifts.  Got ideas for new projects. Talked to many people without stumbling with my words. Most important, I gained the confidence to do it again in a couple of weeks.

Oh where, oh where, oh where is Stephanie???

I have a small confession.  I forgot my blogger account sign in name and password. I forgot where I wrote it down. I forgot how to retrieve it.  I was angry, frustrated and embarrassed so I didn't tell anyone or ask for help. But look... here I am.  In a moment of clarity I remembered what to do and here I am!

It's been an eventful few months so I will give you the brief synapses of what's been going on with me and mine.

I continue to have regular seizures.  An MRI of my brain on October 5th showed significant swelling,  So much swelling that they could not see my AVM.   I can't handle most sensory things like smell, loud noise/talking and bright lights. I struggle with counting, reading, comprehension and spelling every day.  It is difficult for me to talk to people I don't talk to often because I can't read people like I use to.  I can no longer tolerate (I hate that word), accept people who are angry, rude or ignorant.  I'm not trying to be nasty but I just don't have time for those people in my circle anymore. (If you are here reading this I can personally guarantee it's not you :) I choose to surround myself with positive people who make me happy and have similar values as me.  The plan for now is to continue to monitor my seizures, increase my meds as needed and follow up in December with my Neurology team at TWH and my cardiologist at St. Michael's Hospital. 

Skip ahead if I have already told you this; I tend to repeat myself...

When John and I built our house on the hill we knew that one day we would farm.  By "we", I thought HE. Turns out it's me/us.  A small hobby farm.  We would have a few chickens, a cow and a little garden.  As my health and employment status changed so did our time table and the size of our plot.  BLACKberry Fields will become a productive farm in 2012.  Once the tractor rolled its way onto the property I knew it was a done deal. 

Daily conversations about chicken, eggs and the coup expansion rule.  Closely followed by garden expansion, fencing and a new barn.  All Amy can talk about is her billy goat that currently lives at Poppa Black's farm.  Brenden wants to know how much money he is making every time he helps with anything and Dana is still cat (3) crazy!!

In a short 10 months my world has shifted.  I thought I would continue through school and have multiple diplomas giving me the knowledge required to help others.  Turns out others are now helping me.  Everyday I am grateful for the emails, telephone calls, the visits, the offers to pick me up anything and everything I may need.  I am grateful for my family who can still laugh with me through the craziness and hug me through the tears. 

My world has shifted but it's not all bad.  I like how we are living our life.  I enjoy being home.  I like experimenting with preserves, talking to the hens, planning my garden for next year.

Just so you know; I wrote down my password and showed John where it is. :)

All about awesome...

I'm all about awesome right now thanks to a blog post by "Pigtail Pals - Redefine Girly". I am sharing this letter I wrote to the Vice Principal today.  I don't know about you but I am getting really tired of building my children up at home only for them to be tore down at school. NOBODY is stealing my children's awesome!

I know that there are some really great teachers and I applaud them.  Thank you.  This is MY frustration.  MY issue.  MY blog ;)

Dear Mr. F

After a very difficult spring in grade seven, our daughter A decided to approach the new school year with a new attitude. After a summer recovering from a damaged self esteem and sense of self worth she decided that she was not going to let a few steal her awesome. As you are well aware, grades seven and eight are brutal on teenage girls.

On days one through five of school she was feeling great and excited about the possibilities of the new year. Old conflicts had been forgotten and she was looking forward to a fresh start. On day six she came home frustrated and angry. Discouraged and confused. Questioning why a student was centered out in front of the entire class and told that they belong in "coaching" aka "special education". She was offended and so am I. She was very concerned that four students cried during this "group circle".

I would like to know why it was felt necessary to speak to the entire class regarding a few students behaviour in Miss W English class. Are the other teachers also expressing difficulty with the entire class? Why are students being encouraged to talk and speak their mind only to be told they are wrong and that their opinions are not valid? It is becoming increasingly difficult as a parent to support your methods as a vice principle when my daughter know longer trusts you or the "system". As I have said to you before in a previous email (November 2010 re: B) I believe it the responsibility of the staff at (school) to model appropriate behaviour. If staff do not show respect to the students, how do they expect to receive respect in return?

This is how A feels. This is her perception of what happened at "group circle". I would love to have the opportunity to discuss what message you were trying to convey.

Thank you for your attention to this matter.

Regards,

S

*** Just to let everyone know I spoke with the VP. Great conversation - honest and respectful. He acknowledged and validated my and A's concerns and frustrations. I am empathetic to his frustrations. He has a very tough job.

I made it very clear that the behaviour of a few does not represent the entire class. Deal with those kids. The rest of the class has been putting up with challenging dynamics for the past 9 years. The education system failed this group years ago and he is coming in with too little too late. 

I also told him that his message was lost to the entire class. All they heard was that he is taking away their power, cancelling their class trip and that a fellow classmate belongs in special ed.   Not a great start for this class.  Hopefully they will learn to trust him again; if not it's going to be a very long year for everyone.

My friend L sent me a message last night and she wrote, "You all must have some really kick ass things coming your way once this whole ordeal is behind you. I mean mind blowing ....".  This is what I will chose to believe.  Watch out world :)

Life Interrupted

 

On Wednesday we drove to Toronto to meet with my neurosurgeon.  As expected he prescribed an anti convulsent to stop my reoccurring seizures.  As expected I need to take some time off of work to get my side effects under control.  As expected I have to go back in a month for another MRI and consultation to see if my brain is swelling.  Then my neurosurgeon told me that he is obligated to tell the DMV about my seizures and I can expect to lose my license for at least six months, maybe longer.  Completely unexpected!

You may be asking yourself why this is such a shock.  I have been told time and time again by friends, family and acquaintances that I would lose it; after all I am having seizures.  However, both my family physician and an emergency room doctor told me that I could continue driving because I remained conscious and aware throughout every partial seizure.  I trusted that as the truth.  My neurosurgeon believes that this is the beginning of something much bigger and it is simply not safe for me to continue driving.

It has taken me a couple of days but I am starting to work through some of the anger.

Up until this point I have been scared but never really angry.  I deal with things as they come.  Put on a brave front, take the information in, process it and continue to carry on.  John and I both have a great sense of humor so we poke fun at my AVM, seizures, general forgetfulness and other odd side effects in order to stay sane.  Wednesday I had a reality check.

Without my driver’s license I lose my freedom, independence and normalcy.  I can no longer work because my chosen career requires me to drive. Changing jobs is not an option because I simply can't focus long enough to learn a new position.  I can no longer pick my kids up from school if there is an emergency, let alone take them to extracurricular activities.  I can’t go to the grocery store, doctor’s office or visit a friend without asking others for help.  I know that this set back is temporary but I feel like it was the final straw.

I am tired of explaining what an AVM is repeatedly, especially to the same people.  I want people to understand that my recent surgery is not a quick fix but the beginning of a very long and dangerous journey.  I hate that the radiation I received is compared to those of a cancer survivor.  It is very, very different, as is my disorder.  I want my friends to listen and support me but know that I can still listen and support them.  I want people to know that I have skill deficits, memory loss and get tired easily but my AVM doesn’t define who I am. 

My on going medical drama...

For the past several weeks I have been experienced some unusual side effects from radiation. According to the website, doctors and nursing staff side effects are extremely rare. I could expect to return to my regular daily activities within 48 hours - Hmmmm.

Considering only 1% of the general population have an AVM, even fewer have one in the left, posterior, frontal lobe of their brain. Even fewer still have had Gamma Knife to fix it; so how do they really know what the side effects will be??

First day post op I had three focal/partial seizures in my mouth and the most amazing technicolour light show.  One week post op I was losing sensation in my hands and feet and continued with the regular light shows.  I spoke my Neurosurgeon and reminded me to listen to my body and get lots of rest.  I listened and things were feeling better so I decided to go back to work.

In the past 5 weeks the focal seizures in mouth have increased.  It started once or twice a week and has now progressed to twice within an hour.  It is the oddest sensation.  At first it kind of feels like having freezing in your mouth. It twitches and tingles but it gets really scary when I can no longer talk.  Even more scary when I know what I want to say, write but the brain to mouth connection is gone completely.  Each seizure leaves me feeling exhausted.  Each one gets worse than the one before.

I am beginning to feel like the medical community has dropped the ball with my case.  Many phone calls have not been returned from the TWH, Gamma Clinic. I've heard every excuse  going; most recently they have had no record of me calling and maybe I was calling the wrong number.  SIGH

My doctor here has been wonderfully supportive but she doesn't know how to help me because I am her only patient with an AVM who has had this treatment. The wrong medication to help the seizures could be deadly.  She is also trying to connect with my Neurosurgeon.

Last night I decided to take myself to the emergency room after two back to back seizures.  Just going to ask for help is a big deal because the reality is I know more about AVM's and GKS than any of the doctors in the emergency department (they are that rare).  Dr. A was great. He listened and respected that I knew exactly what was going on.  At my insistence he called the On Call Neurosurgeon at TWH to consult about anti seizure medication. The Neurosurgeon told Dr. A that "he does not support Dr. C's patients!" then rudely hung up on him.  So where does that leave me?

I have tried to go back to work and been unsuccessful.  In fairness to the people I support and my employer I will take a leave of absence until the side effects from treatment subside. I will continue to harass the the TWH GK Clinic and find the answers I need to live seizure free.  I will carry on. 

13

You may recall that I said the other day that I consider myself a pretty good parent AND that I am aware of what's going on in the lives of my children and their friends....then I remembered that I am also raising a teenage girl.  All "good parenting" goes out the window when you have a 13 year old girl.  I think that I am reasonable and open minded; then I open mouth and everything I swore I would never say is on the tip of my tongue.

I hear from other parents and teachers how wonderful she is.  Most of the time  at home she is happy, kind, caring and funny. Then, she is not.  I guess I'm glad she saves it for me.

As for their friends you only really know what your child tells you.  The colour they are painted is based on the information you receive.  I know that I am getting the filtered version (or the perception of her 13 year old brain).  I am surprised at some of the things I hear about what goes on at school.  Then I remember that other parents are probably hearing the same things about my child.

To all Teenage Girls... Hug your Mom.  We are trying so hard to do and say the right things. 
To all the other Mothers of Teenage Girls... I'll help you stay sane if you help me.
To my Mother... I am so sorry.

Parenting B....

I consider myself to be a pretty good parent.  I am aware of what’s going on in the lives of my children and their friends.  We have rules and consequences.  We have a routine and lots of structure.  We are consistent.  I believe that, one day, they are all going to have the necessary tools to tackle the world on their own.  Some days are more challenging than others to be a good parent. Today is one of those days.

Our son B has Aspergers Syndrome.  He was diagnosed when he was five.  As he gets older he can explain his feelings and thoughts clearly; helping us better understand his needs.  Most of the time he is a typical, almost 11 year old, boy.  He is happy, funny and a great artist.  He loves video games and superheroes.

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As going back to school approaches the mood in our home is changing.  B’s anxiety is on the rise affecting my own level of calm.  He is picking fights with me so he has a valid reason to be mad.  In his different kind of mind he can rationalize that he shouldn’t be angry about going back to school because everyone is; but if he is angry that I will not purchase him a new gaming system it’s a valid emotion.  Sigh….

For every child a new school year, new grade, new peer group can cause some jitters.  For B it can be overwhelming. Thanks to small miracles he has the same teacher and Educational Assistant as last year.  That will make the transition from summer to fall a little easier on all of us.  

B grew over the summer, which means new shoes, new clothes and more annoying tags to cut.  Smalls things like keeping his backpack and lunch bag from last year will make it easier on all of us.  No way am I to buy him a calculator, though I am sure it’s a requirement in grade six.  Mechanical pencils only please!

My challenges this week will be:
·      Getting him to bed and up again at decent hour.  Bus comes at 7:45am!
·      All screen time needs to be pared back so he can focus while at school.
·      Reading!  The summer reading list was abandoned week two as he insisted he was reading every time he had to do a search on the internet. Some things are not worth arguing about.

Normally these are all things I try to maintain throughout the summer but this year I dropped the ball.  Busy recovering I guess.  Surely something I will pay for in the weeks to come.  Wish me luck.

Eating right...for my type...

For the past several years I have lived in a body that I don’t recognize as my own.  After I had baby number three, almost eight years ago, I was in a bit of a fog. To be completely honest I never even noticed how large I was until she was about one year old.  Then I was too tired to do anything about it.

Since I have tried a variety of weight loss programs, attended dance classes, walked regularly and spent hundreds of dollars working with a personal trainer.  Though I never reached my ultimate goal, everything I have tried up to this point has been an amazing teaching tool.

Since surgery I have shifted my thinking away from weight loss.   A big part of my road to recovery is decreasing inflammation.  If I can lose weight while decreasing inflammation, that’s just a nice bonus.

Inflammation is defined by Merriam- Webster as: a local response to cellular injury that is marked by capillary dilation, leukocytic infiltration, redness, heat, and pain and that serves as a mechanism initiating the elimination of noxious agents and damage of tissue.  Inflammation anywhere in the body is bad but when your brain swells it has nowhere to go because it is encased in bone.  This will lead to more complications that I don’t want or need.

Four months ago I began researching and applying the principles of Eat Right 4 Your Blood Type founded by Dr. Peter D’Adamo to help me decrease inflammation.    Every blood type is unique and each has foods that are considered beneficial (medicinal), neutral, and avoid (toxic).  The research behind this way of living makes complete sense to me.

 As a type O the first foods I eliminated was wheat and corn.  I replaced it with rice, quinoa and teff flour.  I can honestly say I feel so much better.  I don’t miss crackers, bread, bagels and cookies like I thought I would.  I make gluten free bread once a week to freeze and eat when I want to.  My amazing friend J bakes me the most wonderful gluten free chocolate cake or cupcakes if I really need to indulge.

Next step is to be active again without further exhausting myself and reducing dairy. 

Becoming a minimalist...

Today is the day for cleaning out closets, cubbies and drawers.  I am beginning to feel like I am on an episode of Hoarders.

There are five people living in this house and this morning I counted 13 pairs of shoes in our muddy room.  Flip flops, running shoes, rubber boots, work boots, sandals and more.  That number will quadruple when I actually open the closet door. 

The linen closet is another nightmare.  Why am I saving curtains that are sun faded?  I will never dye them.  Do I still need a vaporizer that I haven’t used in three years?  Why are light bulbs being stored in the linen closet yet I don’t have a shelf for my extra towels?  Why do I need extra towels? When was the last time I used those sheets?  Our youngest is almost eight; I guess it’s time to get rid of the last of the bibs and receiving blankets. 

In the past three months we have had three garbage bags of hand me down given to us.  I love receiving hand me downs from older cousins and friends. We have multiple totes of clothing that I have been saving until someone grows into it. Hand me downs save us lots of money every year but I could seriously open a thrift store right now. Today we will spend hours sorting, purging and bagging up unneeded items. Keep what we need and give away the rest to others who could use them.

My friend P recently shared with me that she believes everything should have a place.  If you are saving a trophy, toy or memento from your childhood then it should be honored and on display not keep it packed away in a box on the top shelf of the closet. I like it.  If you can’t honor it, get rid of it.  If you haven’t used it in six months, get rid of it. If it doesn’t fit, get rid of it.   If you resent having to dust it, get rid of it.  If it’s taking up space that you need, get rid of it.

I envy people who have just what they need and no more.  In theory if there is less clutter in my home then I will have less clutter in my brain.  I like it.  So I will add becoming a minimalist on my list of goals to accomplish over the next three years.    It will likely take all three years with the amount of things I need to go through.

Sleep, wonderful sleep…

I like sleeping.  I like it a lot.  As a child I never really fought to stay up late.  Except when I was in grade three and TB told me that she got to stay up until 10pm!!  As a new Mom I couldn’t wait for bedtime so I could collapse into my bed (or theirs) worn out.  As my little kids grow into big kids I am often asleep before they are.  They are becoming night hawks like their father.  I rarely watch television because most of the good shows are on way past my bedtime.

So I like and desire sleep but I don’t always pull it off.   As a woman and a mother I have perfected the art of carrying on and pushing past exhaustion.  Occasionally I don’t get enough sleep because I have too much to do and it can’t be put off any longer.  Twice a month I work a night shift and that messes me up for a few days.  Sometimes my busy brain won’t shut down and I just can’t sleep. Other nights I dream crazy, crazy dreams and it just feels like I haven’t slept.

I am currently 7 weeks post Gamma Knife Surgery and sleeping has become extremely important.  If I am over tired I have focal seizures.  Most recently these seizures occur in my mouth effecting how I talk and processing what I want to say.  They last about three to five minutes but it feels like eons.  Every time I have one, they get a little bit worse than the one before and last a little longer.  My neurosurgeon reminds me, regularly, how important it is that I listen to my body because my body knows what it needs. 

Today my body told me that I couldn’t complete my shift.  I tried to argue but it won. My body said to sleep at my Mom and Dad’s before I came home.  I did.  It is currently telling me to back away from the computer and go to bed.  I will. Soon.

ps - if you checked the link and read that "very rarely" some people have side effects and may lose a little hair - I'm some people.  Just lucky I guess. :)

Why me? Why not?

Looking back on the path I have chosen I would say I have led a pretty fantastic life so far. I am married to my “high school sweetheart” and together we share three wonderful children.  I am pleased with the decisions that have led me to where I am now.  Have I had moments of, “oh no, what have I done?” ABSOLUTELY!

Two years ago I impulsively quit a job I loved at a children’s resource centre. I adored the families that I interacted with daily.  I believed (and still do) that parents are a child’s first and best teacher.  It gave me tremendous joy to watch shy babies grow into confident toddlers; and nervous, exhausted parents become secure and enthusiastic about their new role.

So why did I leave?   At the time I confused myself and everyone around me.  I was becoming worried that I would no longer be able to connect to the families as my own children grew older.   I had always made families and their needs my top priority.   Management required me to spend more and more time behind the scenes, and I felt conflicted.  I was afraid of losing my passion.  It was just time.   For weeks I was certain I had made a huge mistake.  If it wasn’t for the patience and support of my husband, and close friend J, I would have continued to doubt my decision.

It is said that everything happens for a reason and I believe that is true.  I understand that now more than ever.  Leaving my job opened me up to new opportunities.  I have more free time to spend with my own children.  I have become more present when I am at home because I don’t have to fit in something that didn’t get done at work.  I have a new career that is equally fulfilling and extremely flexible. I have met wonderful new people that I may have never known.  I have broadened my education by taking Anatomy and Physiology courses that have helped me better understand my current condition and navigate my way through the medical community.

I have had many moments in the past six months where I have asked what I have done to deserve having an AVM.  Why do WE have to deal with this? If everything happens for a reason, what can the possible reason be? 

Slowly I am figuring it out…

• I can deal with this.  I am strong and confident.
• I am a great advocate for myself and others.
• I am an educator and I love sharing everything I know.  If I don’t know, I will find out.
• I live in a wonderful community filled with loving, caring neighbours, family and friends.
• I have three children who love me – no matter what.
• I have an amazing, supportive husband!  With him by my side we can do anything.

Why me? Why not?

The beginning...

Every journey has a beginning.  My journey began with a headache.  A headache that led to a CTScan, to a MRI and to a Cerebral Angiogram.  A headache that led to a diagnosis of an
Arteriovenous Malformation in the left frontal lobe of my brain.
 Basically an AVM is a tangle of veins that doesn't belong. They are very serious and very rare. An estimated 1% of the population. Over time they become weak and rupture. They are commonly discovered after a stroke or during an autopsy.  I am very lucky.

When a major health crisis interrupts your life you rethink everything.....

What can I do to help myself heal?  What changes do I need to make to become healthier?
What are my beliefs and values?  Do I honour them?
Have I been a good daughter, sister, and friend?
Does my husband know how much I love him?  Does he know how grateful I am to have him in my life?  Does he know that I think he is an amazing father?
Am I a good parent?  Am I engaged enough? Am I raising my children to be resilient? 
Am I living my life with purpose and meaning?  Could I be doing more?
Am I surrounding myself with people that make me happy?  Am I making them happy?
What is really important to me and my family?  What changes need to be made?

As I adjust to my "new normal" I look for and find something that makes me happy everyday. Sometimes its simple things like the wind blowing the clothes on the line.  Sometimes it's the knowledge that I have made a difference.  Today is was starting this blog with the support and encouragement of my friends.