When I started this blog I did it with the intention of keeping my family and friends current on my medical situation. It was going to be my online journal. I also thought it would help raise AVM awareness.
What really happened was people no longer had to actually communicate with me or John because I laid everything out so nicely here on the interweb. People who I thought would be by my side always made light of the severity of my illness or disappeared completely. Others did not and for them I am eternally grateful. I have also made some wonderful new friends along the way.
So though I haven't posted in some time I decided it was appropriate to have a final entry.
It has been two years since I received Gamma Knife Surgery. My AVM is still active. I am still at risk of stroke. I have permanent brain damage from the radiation and a seizure disorder. I no longer drive. I no longer work away from home. WE have HHT.
My friend Rachael has a sign at her farm that reads;
"When life hands you lemons trade them in for goats."
That's exactly what we did.
You can follow our adventures in farming here.
Sending love and light from the hill.
Stephanie
Friday, 12 July 2013
Thursday, 17 January 2013
More late breaking medical news...
Last Sunday we left our cozy home on the hill at 4am and drove three hours to Toronto so Brenden could have his annual MRI. The purpose of the MRI is to monitor the lesions (yes more than one) in his brain. Of the three known lesions there is one "of interest" in the left frontal lobe. The same place my AVM aka Monster lives.
We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel. By the time 9pm hit all three children were exhausted from our very early start.
On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him. Yes, he really said that. The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment. He is also being scheduled for an EEG to check for the possibility of seizure activity.
Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT. If you want some quick facts about HHT click here. I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases. I, thankfully, did not present any more than the one in my brain. Brenden is known to have one in his nose and one in his mouth. His heart is clear. We know that because his cardiologist did an echo bubble study before heart surgery last spring. His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.
I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare. For both of us to have one without HHT would be extraordinary. HHT is uncommon but not rare. Telangiectases are basically an abnormal connection between small arteries and veins. They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death.
After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion. If they do not have it then their children will not inherit it. If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.
Every family with HHT is unique and it often goes completely undiagnosed generation after generation.
So what does all of this really mean?
More waiting. More questions. More living.
Sending love from the hill.
Steph
We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel. By the time 9pm hit all three children were exhausted from our very early start.
On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him. Yes, he really said that. The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment. He is also being scheduled for an EEG to check for the possibility of seizure activity.
Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT. If you want some quick facts about HHT click here. I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases. I, thankfully, did not present any more than the one in my brain. Brenden is known to have one in his nose and one in his mouth. His heart is clear. We know that because his cardiologist did an echo bubble study before heart surgery last spring. His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.
I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare. For both of us to have one without HHT would be extraordinary. HHT is uncommon but not rare. Telangiectases are basically an abnormal connection between small arteries and veins. They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death.
After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion. If they do not have it then their children will not inherit it. If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.
Every family with HHT is unique and it often goes completely undiagnosed generation after generation.
So what does all of this really mean?
More waiting. More questions. More living.
Sending love from the hill.
Steph
Monday, 14 January 2013
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.
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
Sunday, 6 January 2013
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
Monday, 31 December 2012
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.
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.
Sunday, 23 December 2012
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:
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;
xo
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.
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
xo
Monday, 5 November 2012
Whats on my mind?
If you really know me you will know I have very strong opinions. Having a brain injury, as a result of Gamma not the AVM, hasn't changed that. However, now my filter is bent and slightly broken so I'm not as tactful as I once was. Does it bother me? Occasionally. Other times not at all. Some people need to be shook into reality about me, us and whats going on in our community and beyond.
I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent. For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.
If I can accurately predict my future I will say you are going to see a lot less public acting on my part. I am tired of pretending all is well when it is not. What you won't see is me posting about it on Facebook. I will still continue to be very active on our BLACKberry Fields fan page and share information. I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends. I will still participate with private groups I belong to.
However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?". Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates. I am guilty as well. I have decided I need more.
I intend to be much more active on this blog. It will be unfiltered so if you really want to know whats on my mind this is where you will need to look. Keep in mind before you subscribe the following user tips:
PS - I also love Pinterest so I hang out there frequently.
I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent. For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.
If I can accurately predict my future I will say you are going to see a lot less public acting on my part. I am tired of pretending all is well when it is not. What you won't see is me posting about it on Facebook. I will still continue to be very active on our BLACKberry Fields fan page and share information. I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends. I will still participate with private groups I belong to.
However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?". Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates. I am guilty as well. I have decided I need more.
I intend to be much more active on this blog. It will be unfiltered so if you really want to know whats on my mind this is where you will need to look. Keep in mind before you subscribe the following user tips:
- I will run this blog like a monarchy where I reign as queen. You can comment your opinions as you wish but I will have the last say. (Refer to my last post about writing my truth.)
- I will write about gender bias and feminism because it is very important to me.
- I will write opinion pieces about parenting because that is what I know.
- I will write about farming and sustainability because that is where we are going.
- I will write about what I really think about the medical community and you may not like it or want to hear it... It will give you something to think about and then you can seek your own truth.
- I will write about my history and how I got to be who I am.
- I may ramble because sometimes that's whats happening in my head.
PS - I also love Pinterest so I hang out there frequently.
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