two of 52

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

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

It only seems appropriate that I end the year with a blog entry. 

I open by thanking my family and friends for their on going, unwavering love and support. 
Without my John and our children I would be hopeless.
Without my Mom I would be lost. 
Without my fellow monster fighter Holly I would be insane. 
Without my regular check-ins from a number of incredible women I would be lonely.  I would start listing them but then I would forget someone and feel dreadful.  You know who you are.
Without my Wednesday "meeting of the minds" I would forget how to laugh.  I already miss Nutcracker rehearsals for that extra time we get to spend together and the women I don't see on Wednesdays.  Maybe you should all just show up at the studio anyways ;)
Without my Facebook friends and community(s) I would be bored, uneducated and dull.
Thank you.

2012 has been an incredible year. 

Our children have grown, matured and are becoming some of the most amazing people I know.
Amy is fabulous.  I was so proud of her during the Nutcracker and the kindness she showed towards the little dancers. While some of the older girls largely ignored the littles, Amy was always present and willing to help and encourage.  To have other parents comment on how wonderful she is makes this Momma very proud. Shine on smart girl.
B has made a complete transformation since his heart surgery in March.  Most notably he is growing.  He has grew 1 1/4" in the past two months.  He continues to try hard at school even though its challenging.  He has formed some amazing friendships and is truly one of the most caring boys I know.  This just proves once again that gender, labels and diagnoses do not define a persons character.
Dana is our brave song bird.  Never silent and extremely resilient, Dana is turning into a very strong and confident young lady.  She has an amazing memory which comes in handy for me.  She is always available for a hug and is very intuitive about what each member of our five needs.  I have to work extra hard to make sure she gets what she needs in return.
John has proven to me over and over again that I chose well so many, many years ago. Almost twenty three years if you are counting.

2013 will bring more obstacles and difficulties. 
We can already see them and around them.
With each challenge there will be further growth, rewards and fresh outlooks.

We are looking forward to continuing expansion on our farm. 
I'm starting the vision board today...  I NEED a plan that I can see!
I am looking forward to learning more and spending time with more like minded families.

We are taking more control of our health individually and as a family.  I am the expert on me and mine.  Our expanding team is going to have to check their egos.  I'm sure I will share much about that as January rolls on.

Farewell 2012.

Welcome 2013.

Happy 18 months to me and holiday wrap up.

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

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

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

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

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

Happy 18 months of shit getting real to me!!

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

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

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

Dream big, dream bold...

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

xo

The house on the hill

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

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

Still, the answer was pretty simple. No.

Later on, as always, I reflected. 

Why not move? 

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

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

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

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

Pretty picture isn't it? 

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

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

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

This is what real looks like.

If you love me...

If you love me...

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

I in return will...

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

Falling into Fall - Literally

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

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

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

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

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

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

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

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

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

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



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

Coping Techniques - AVM Style

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

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.

June Highlights

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.

Living history

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

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.

Building BLACKberry Fields

John, our three children and I have lived in the house we built on the hill for just over 8 years.  For over 10 years we have dreamed of a farm.  To build something sustainable that can be passed down through out generations to come.  We often tell people we were born in the wrong century.

We named the land BLACKberry Fields because it's a spin on our family name and the blackberries that grow wild throughout the field and along the tree line.

This spring is the start of something big.  We are turning dreams into goals and working towards achieving them. 

Last fall we hired a local contractor to expand our vegetable garden.  It is roughly 10 times larger than previous years.  We will grow enough for us, our neighbours and to participate in our local farmers market.

A lot of fresh fertilizer was spread. 

We inherited Grandpa McKelvey's tractor and started drilling holes for fence posts. 

We have purchased lots of fence and we still need more. 
Might as well do it right the first time and save headaches later.

Seeds were carefully selected, ordered, planted and are beginning to grow.

I have spent countless hours researching what animals are the best fit for our land.  By the end of April four Tamworth weaners, only six weeks old, will move to the hill.  Their job will be to help root up more land for next years crops.  No need to hire someone this year.

courtesy of google images

We are expanding our egg layers. They will have their new home moved here at the end of May.  The area will give them plenty of space to hunt for bugs but will also be fenced to better protect them from the sneaky fox. Mr. Roo and "his girls" will have a new home for their chicks.  We will also be raising our own fryers (meat birds) this year. 

The pasture still needs to be prepared for cattle to graze. In past years other farmers have used our land.  This year a couple of the cattle will be our own.

And if all goes according to plan we may even see a goat or two ;)

After Ablation...

While laying on a small couch around 2am watching B sleep I was suddenly surprised with how tall he was.  Really surprised. When did he get so big?  I knew he was growing because he just got new shoes and they were two sizes bigger than the ones purchased in October.  Plus every time he sees his Grandma Janet he measures himself against her; its like a right of passage to surpass her 5' status.  But as he lay in his hospital bed, softly snoring,  hooked to an IV pole, ECG and various other machines he was suddenly a young man and not our wee boy anymore.

Over the past five days I have marveled at his quiet confidence and extreme bravery.  No matter what information he was given he listened politely and absorbed what he was hearing.  Even when the news was a dose of harsh reality he remained calm and optimistic.  He asked questions to help himself (us)better understand what was happening and why. When ever he was asked if he would like to participate in a research study to help other children he eagerly agreed. Where did my anxious bundle of energy go?  The boy who bounced non stop through out an entire school year?

John and I couldn't be more proud of B and  we are so very relieved that this part of the journey is over.

So what now....

The accessory pathway was found on the left side of his heart and repaired.  He was monitored closely and received Heparin for about 18 hours to prevent clotting.  He is sore, tired and glad to be home.  He will continue to take Aspirin for the next three months.  The risk of the Aspirin causing a bleed in his brain AVM is very low therefore a must to prevent blood clots in his heart.  In June B will have another ECG and his Cardiologist will make further recommendations.  As it stands in this moment, his broken heart has been mended. 

John and I both want to thank you for the tremendous amount of ongoing support we have received.  We are extremely blessed to have such great friends and family behind us.

Sending much love from the hill and
Happy Spring :)

The Count Down

It's official. 
The count down has begun.
We have waited for months.
Now I wish there was a little more time.
In one week B is going to have his broken heart mended.

We are told the procedure will take four to five hours.
They will first find the accessory pathway, then repair it.
B's doctor reports great success. I have faith in him and the hospital.
However, we have the added complication of HHT. The unknown.
The likelihood of having to use a blood thinner is 50% depending on which side of the heart the problem lies.  That means the risk of a bleed in his brain is lower. 
The Neurologist gave his approval. 

I have never been more afraid in my entire life.

Fear makes you to do lots of things.
You reassess and reevaluate.  You question everything. You prioritize.
You take stalk of where you are, where you are going and who is coming for the ride.
You make choices in the best interest of you and yours.
Choices that not everyone will understand or respect.
I am making peace with that.

I am going to put my blog to bed for the week.
I am going to focus on whats truly important to me.
My family of five.  Our health and happiness.
The future.

Waiting for Spring

I like winter.  I love the crisp air and trees heavy with snow.  I enjoy activities like snow shoeing, skiing, tobogganing and even ice fishing.  I am especially fond of "snow days" when the school buses are cancelled and the kids are home.  This year I am done with winter. Enough already!  I am tired of being trapped indoors.  My yard is too icy and I am alone far too often to enjoy anything outside.

The beginning of Spring is my mental marker of time.   Come Spring I will be three seasons post Gamma and approaching my one year anniversary.  Spring is the time for new beginnings, big plans and moving forward.

B will be just past his heart ablation surgery and in recovery mode. A will be anticipating TLAC (art camp) and preparing for grade eight graduation (Oh my goodness!) D will also be graduating and moving on to the middle school.  John, who is always super busy, will become even busier with his carpentry business and here on the farm.  I will officially become a farmer.

Spring means fencing, fencing and a little more fencing - for security, privacy, gardens, chickens, cows and pigs. I have already enlisted the help of my father and brother in law as soon as the frost leaves the ground.  I will reward them with good food and endless gratitude.

This Spring I have insisted on learning how to use the variety of  time saving tools we have collected over the years. I just happen to have a wonderful teacher in house.   I am going to learn to do for myself a little more on the quest for self sufficiency.  I am differently abled but capable.

The chicken coops need to be cleaned and remodeled to accommodate our changing needs.We will have three houses this year. McKelvey House for our free range egg layers.  Mills House for the hens, roos and chicks. We are eagerly anticipating the first bunch of chicks to hatch. Hosaki House for our meat birds. Until we have a giant barn in the meadow this is how it will be.

I have been talking weaners (piglets) with anyone who will listen. Trying to find our small farm the perfect breed. I believe I have secured four Tamworths when the snow is gone.  They will forge, root and live outdoors.  I am leaving the cattle to John.

Spring means tilling, digging and planting.  Annuals, perennials, vegetables and herbs.  I can't wait to get my hands dirty. I need something to keep my mind and body active.  Friends who weed are always welcome.

Goodbye Winter.  Welcome Spring! 

Understanding My Aspergers Boy

Every year in September I produce a document that I have written about our son and present it to his teaching team.  It is my expectation that they share it with whom ever needs to know.  Every year I adapt and modify it to reflect changes and progress.  I try to incorporate elements of his IEP (Individual Education Plan) to make it teacher friendly.  I have done so for the past 5 years.  Why?  Because I am the expert on B.  Why? Because nothing a degree, textbook or a doctor can tell me will change what I see, feel and know to be true about him and his diagnoses.

I have decided after careful consideration to share some of it with you. My hope is you will understand what it's like to live with a different kind of mind.  Perhaps you will understand that nothing in our world on the hill is cookie cutter.  Perhaps you will better understand my last blog post.

B’s family, friends and school community must keep in mind that he is little boy first, he is not his diagnosis.  However, his diagnosis does explain some of his behavior and reactions to some situations.  Any techniques used with a child who has Aspergers will also benefit a typical child.

All About B...

In May 2006 B was diagnosed with;
Autism Spectrum Disorder - Aspergers
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Oppositional Defiance Disorder

In April 2011 B was diagnosed with Wolffe Parkinson White Syndrome. WPW is a very serious heart condition in which there is an extra electrical pathway (circuit) in the heart. It can lead to episodes of rapid heart rate or tachycardia.  He is scheduled for ablation surgery in March. (Thus throwing off every routine and sense of control this little boy has.)

Aspergers is a pervasive development disorder characterized by an inability to understand how to act socially.  Identified children may not recognize verbal cues or understand social norms.  They may have difficulty expressing their own feelings and perceiving others’ feelings. Children with Asperger’s typically make efforts to make friends, but it is extremely difficult because they lack social awareness and are preoccupied with their own agenda.  They can be extremely egocentric. Most have excellent rote memory and become intensely interested in one or two subjects (sometimes to the exclusion of everything and everybody else). He is currently passionate about superheroes, monsters, zombies and video games. Like every child, each child with Aspergers is completely unique and brings his or her own twist.

With constant guidance and use of social stories B has been able to make many friends.  He is learning that it is important to know people by their name not by the color of their hair or where they sit in the classroom..  B is becoming increasingly considerate of others feelings and is aware when he is not.  He may say; “I don’t want to hurt your feelings but…” “I shouldn’t say this but…”.   Please remind him that sometimes you shouldn’t say the things you are thinking out loud. He is very loving if you are important to him.

He is a literal thinker and needs concrete rules and guidelines.  He continues to struggle with theory of mind.  He believes everyone thinks as he does and becomes frustrated when they do not or when people do not understand what he trying to say.  Please ask him for clarification and don't assume you know.

B's emotional and physical health and success academically depends heavily on routine and sameness.  The more things are the same, the more confident and less anxious he is. Any change in his routine can cause anxiety.  This includes new supply Teachers, Educational Assistants and rules.  Children with Aspergers often have repetitive routines or rituals.  It is extremely important that they follow their routine because disruption can cause shut down.

B needs to feel like he has control over his environment.  Anxiety can present with physical symptoms like stomach aches and being tired.  He may also shut down or refuse to work.  He may act out in frustration.
How he experienced an occurrence the first time is how he expects it to be always. The first days and weeks of school set precedent for the year. 

More about B…

• B is an excellent artist. He has spent years working one on one with a local artists to pursue his passion.  We use his passion to our advantage rather than discourage it. 
• B loves to draw any opportunity he gets.  It is important to remind B that everything counts so not to draw on school work.  
• He also uses drawing to self regulate.  If he is anxious or overwhelmed he will draw more.
• B is an blue belt in Karate.
• B is very funny.
• B is very self aware and will require breaks to self-regulate. Most often to draw but he may need to walk the halls.
• B scowls often and doesn't make eye contact.  That’s okay.  He also has a great smile and infectious laugh.
• He zones out. Often.  Ask him to pause what ever is going on in his brain and come back to it later.
• B understands sarcasm (that other children may not) and is sarcastic.  We remind him that sarcasm often appears to be rude even if that is not his intention.
• When B is anxious he will repeat himself.  Sometimes just mouthing the words again.  Remind him "no flash backs.
• B is very private.  He may choose to use the washroom during class time so he doesn’t have to be in the washroom with other boys.  Eleven/twelve year old boys don’t tend to respect privacy very much.

Ideas to promote success… (once again may work with EVERY child)

• Have structured environment with a consistent routine. 
• Provide him with a written schedule.  He needs visual cues to keep him on task.  Picture with word charts work best.  Even if he doesn’t appear to be using them keep them accessible.
• Be aware of the environment.  Is it over stimulating? Noisy, visually distracting, smelly, too hot/cold. 
• Be aware of who he is sitting with.  He may look to a desk partner’s work to keep him on task.
• Use a kind but firm approach always.  You will get better results.  Yelling does not work - ever.
• Be consistent in word and action.  Make rules and stick to them.
• Pick your battles by deciding what is really important because you can not back down once you have made a request.
• He may fixate on a single thought or activity and stop paying attention to everything else around him.  Therefore he will need monitoring and reminders to keep him on task.
• Keep instructions simple.  The more complex the more frustrated he will become.
• He knows most of the information you are looking but you have to wait for him to retrieve it. 
• Every new situation needs to be explained and modeled exactly as you wish.  Sometimes more than once. Sometimes every time.
• Use social stories to help explain new concepts.
• He is a visual and physical learner.
• After a class lesson he may need to be re-taught one on one. 
• Do not insist on eye contact, he is still listening even when he isn’t looking.
• Intervene before poor behaviour escalates.
• Never miss an opportunity to reinforce good behavior or work.  Verbal praise and rewards like computer time are effective.
• When using a reward/consequence system make sure it is clearly explained and he understands it.  Have him repeat it back to you.  Just because he has been told doesn't necessarily means he comprehends.
• Detention will not work.  Loss of privilege may.  Losing a recess is actually a reward because then he doesn’t have to deal with confusion and difficult situations on the playground. Plus he can draw during detention.
• Make sure all staff, including relief and support staff , know who B is and what his unique needs are.  

B doesn’t have to change for us.  He is who he is.  We need to adapt to him. Change and challenges will happen through out B’s life and it is our job to make sure he has the tools to cope with them and excel.  We are doing our job. Please work with us.

Excellent resource:
Parenting Your Aspergers Child by  Alan Sohn Ed.D and Cathy Grayson, M.A.

Side note:

Those of you who have been following my blog know that I am currently suffering from a tremendous amount of swelling in my brain due to side effects of surgery.  Writing and expressive thought is extremely hard (but not as hard a actually speaking).  Thank you for your patience and understanding if I am not clear when I write.  I am trying very hard.

Lessons my AVM has taught me - Letting go

So lets face it;  I could spend all day, almost every day telling you how horrible it is waiting for my head to explode.  How debilitating the side effects from radiation are. How expensive my seizure medication is ect, ect. But I won't.  Instead I will tell you the life lessons I am learning along the way.

While watching my children wait for their school bus this morning, from the comfort of my kitchen coffee in hand, I was reflecting on how I have evolved as a parent this past year.

I don't think I ever classified myself as a helicopter parent, always hovering about to protect them from danger, but I am very aware.  I admit I tend to remind them a little too often to be careful, slow down and I have always been an arms length away at the playground.  I referred to myself as "the Unfun Mom" this past summer  when I heard one too many times, from another Mother's child, "awe but we are just trying to have fun."  I want my children to explore, challenge themselves and have tons of fun - while carefully weighing the pro and cons of their actions.  We have had broken ankles, noses and many bruises so I felt justified.

This morning D asked to go outside and play in the snow a half an hour before the bus was due to arrive.  It was barely light out but away she went, fearlessly.  Last winter I would have cautioned her about not getting too wet before the bus came, pointed out the obvious lack of light, cautioned her of strangers, animals, traffic and being buried alive in the snow (???).  Today I kissed her goodbye and sent her on her way.  Her siblings slowly straggled after her.  She was joined by the three girls down the road.  I watched them collectively climb the giant snow banks, roll snow balls and have a fantastic time all before 8am.

I am slowly learning to let go a little.  To live moment to moment.  I don't have to have a detailed plan for everything life event.  At first I felt guilty.  Like I wasn't engaged enough.  That my AVM exhaustion was now making me a "bad" parent.  However, while watching these three amazing children play I had a light bulb moment.

Our children are resilient, smart and amazing because we gave them the tools to be so.  Now it's time for us to step back and let them figure things out for themselves a little more.  If they don't have the freedom to take risks and make mistakes how will they learn from them?  I trust them and they will always have us for back up.

One more thing I know to be true... It's okay to eat cookies for supper occasionally:)

Sending you happy thoughts from the hill..

Steph