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

If I only knew and the conflict between two minds...

I want to start my post by saying that I never intended this blog to be everything AVM.  I usually have many opinions that I like to share on lots of subjects.  I once considered myself an expert on many things.  I thought I would write about those things.  As it turns out the monster who lives in my brain, aka the AVM, rules my world.  This is not my choice but my new normal.

My Mom recently asked me if I knew then what I know now would I have chosen to have Gamma Knife Surgery.  The answer with out a doubt was - No, never!  I wish I never knew.  I wish I could have continued to live my life as I was. I wish I had my life back. I wish to live seizure and side effect free.  I wish for simple. Gamma was my only option besides do nothing.  I was reassured that it was safe and side effects were rare.  I was assured I could return to work as normal after 48 hours.

This has not been my experience.  I am currently waiting to hear from my Neurologist.  I need answers that I hope he can provide without me traveling to Toronto.  I am emotional, tired, angry and continuing to have seizure activity.  I didn't sign up for this.

My friend Melissa reminded me this morning that my side effects could indicate that the treatment is working.  I needed to hear that and I thank her.  It has put things back into perspective a little.

I chose to have Gamma because doing nothing was not an option.  I don't want to have a stroke and risk dying at 36.  I watched close up what it was like for three boys to lose their Daddy and his Wife and family struggle to carry on without him.  I don't want that for John or my children if I can do anything to prevent it.  I want to help raise my young family, even if it means I have to do it differently.  I want to live a productive life even if it is not the life I originally chose.

Today I choose to make peace with my side effects.  I will take them as they come.  I will cope the best I can.  I will continue to self advocate and ask questions.  I will call my Cardiologist and actually acknowledge that something is wrong with my heart.  I will continue to ask for and accept the support and understanding of John, my family and friends even when I make it hard.   I will try to remember that my children are just that, children, and they will not always be sympathetic to the situation and that's okay. I will continue to heal on my monsters time table.

Stephanie

Where I'm at... this is not a pity party.

For the past 13 years I have worked as a Social Worker, Early Childhood Educator, Parent Support Worker, Developmental Service Worker or a combination of all for four different agencies in my community. I have been a board member, a manager, on the front line and a volunteer. I have worked with and supported a diverse group of people and their families. I have partnered with community groups, agencies and the medical community on a number of different projects.  I am educated. I have always taken pride in putting people before paper work.

 This morning I learned the system is flawed beyond belief.  Maybe I always knew but I hoped I could help change it. Maybe through this experience I still can advocate for change.  Right now I am just frustrated.

In 2011 I worked exactly 18 shifts.  Nine prior to treatment and nine post.  I want to work.  I enjoy working.  I believe I still have a a lot to offer.  My reality is I can not.  I am not well.  It's not safe.  Period.

My other reality is I still have a family, a mortgage and financial obligations.  All the same things I had while I was working.  Fifteen weeks of sick leave through Employment Insurance is long gone.  I have no Long Term Disability through work.  I do not qualify for Ontario Works (municipal) and Ontario Disability Support Program (provincial) because they look at a families income not that of the individual.

Don't get me wrong I value my family above and beyond everything else.  But what happened to Stephanie as the individual?  Why did I contribute to MY to income tax and employment insurance if I can't utilize it when I need it?  I have applied to Canada Pension Plan - Disability and I can expect an answer by APRIL.  So in a nut shell I can't access programs I have contributed to because I belong to a family. My doctors and I have done our part but it will still take up to 24 weeks for the government to approve my claim.  I don't want to even think about the very real possibility that my claim will be denied.

This morning I found out that I do not qualify for my mortgage disability insurance (which I have paid since I was 20 years old) because I haven't had a stroke, yet. Huh. So just to clarify IF I had cancer, a heart attack or already had a stroke, no problem.  But because I can't work due to treatment I have received to prevent a stroke I don't qualify.  Oh, on a brighter side if the doctor tells them I have less than 12 months to live I do qualify! What?!  So now I have added Michelle from TD Financial Insurance Department to the short list of people John needs to call to get help IF I have a stroke.  Fantastic.

The system is flawed.

Now let me tell you what I am grateful for and what I am going to focus on....

• We are happy and healthy (if you don't count my earlier rant and all those acronyms :)
• We have a freezer full of food and I have the skills required to make healthy meals for my family.
• We are warm.
• We have a beautiful home and lots of land with many resources.
• Our bills are paid up to date.
• John is working.  (Feel free to refer him :)
• "Someone" just had furnace oil delivered to our house free of charge because they knew we would need it before the end of the winter.  Thank you...

Sending you gratitude and positive thoughts from the hill.

Steph

All about spoons...

When you have an "unknown" illness you are always looking for ways to explain how you are feeling to others.  Considering only 1% of the general population have an AVM it stands to reason that even fewer have them in the left frontal lobe of their brain.  Even fewer people still who have had the exact treatment.  It's a pretty lonely place to be.

Having an AVM isn't like having cancer, a diagnosis that has touched everyone.  It isn't like having a physical disability that everyone can see.  When I am asked about my symptoms people feel like they may able to relate because they too have headaches and they are often tired.  When I talk about my bruit (woosh, woosh, woosh inside my head) people will say "Hey, I can hear that too!"  Let me personally guarantee you that it's nothing like what you hear.  Imagine it 20 times louder and it disrupts your sleep and concentration. (But thank you for trying to understand.)  Sometimes people unknowingly minimize my seizure experience(s) because "at least it's not a grand mal or a big one." 

My friend Holly has an AVM.  It is in a similar location to mine.  She was also treated by Gamma Knife and has similar side effects.  We are on the same anti-convulsant. She is a single mom and one of the most amazing women I have yet to meet.  She introduced me to "The Spoon Theory" written by Christine Miserandino.  I encourage you to read Christine's story.  Though her diagnosis is different, Christine's explanation of what it feels like to live with Lupus couldn't get much closer to what it feels like to be me in this moment.  We talk in terms of spoons often here now and it has helped my family significantly.

A very thoughtful Christmas gift from John. 

So I'll always have enough spoons.

Holly has one too - because John is just that awesome!!

Keep your extra spoons handy I may need them yet.

Sending you love from the hill.

Steph