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

.
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. :)