Dry Toast-Guest Blog by Jeni

Sunday was a pivotal day–for what reason I cannot explain, but pivotal just the same. I had a retreat this past weekend. All girls who like to scrapbook or quilt, love their families, are such sweet and unique individuals. It was nice. Hard. Different. Cathartic. Nice. Everything is that way these days, Nice….but. There is a bit of a BUT, but I don’t worry about that BUT as much as I used to.
On Thursday, the scrapbook weekend started off with a bang. I had been preparing–for scrapbooking-layouts, photos, journaling, color schemes, stamps, brads, buttons…oh my!! I was prepared.  What I wasn’t prepared for was grief. For telling my story. It is something that you cannot prepare for. No matter what you do. No matter how hard you try, your feelings are unknown. It’s like when you are 9 months pregnant, you know this baby will arrive sometime….you just don’t know when!-it sometimes drives people like me crazy who kind of like to know about what the day will bring. Grief and feelings are not like that. Life is not like that. And it is ok.
I got all set up and began to scrapbook, looking at my detailed list, eager to check off items one by one. I was starting with our California trip, such a fun time. And really a journey of growth-a FIRST vacation without our girl.  Though like so much these days, a study of opposites.  SO very glad to be with Ayden and Joe and very dear family, yet also SO missing my girl and knowing she would have loved so much about the vacation too.
As I got started scrapbooking, more girls began to arrive, each of them with crazy sets of luggage that matched the amount that I had just brought in. All eager to begin…and so we did.  As the day progressed, we continued with the “getting to know each other” chats, and with it, questions about family.  Although I should have known this part would be hard, it seemed that I had not really prepared for these feelings. As I shared a little bit about Kyanna and my loss, tears filled my eyes. I no longer knew what to say. I did not know what to do except squeak out thank you to their very kind condolences, a small smile, nod, and tears, as some of the girls found out about this very dear girl that was now missing in my life.
I continued on with my scrapbooking, trying to swallow down the grief. All the preparation-journaling and planning, and lists-and this so very important thing-that I am different-that a big piece of my family, a chunk of my heart is missing….I couldn’t prepare for that–or know these emotions I would feel, at a place with all these kind, fun-loving ladies, who hold dearly their families so much that they lovingly spend 16 hours a day for 3 days looking at photos, arranging photos, perfectly putting down on paper or digitally their love for their families, their children, their pets.
For the rest of Thursday, I choked on my grief. I swallowed it like a dry piece of toast. It was stuck, yet I didn’t really want the discomfort of it coming up, so I politely ignored it, and continued to do so for the next day, even when after dinner we played a conversation game.  I got a “chat stack” game card that invited me to tell my story–the card I got said–if you could ever write a book, what would you write about? I proceeded to tell a light-hearted, sort of cute story about a mouse in our car. My piece of toast just got stuck a little bit further inside.
Oh well, you go on. you just DO. Then Saturday morning, someone asked me to see photos of Kyanna, she asked about what I was scrapbooking. She asked.  She wanted to hear about my girl.  She maybe could see the crumbs of grief sprinkled all around me. Maybe not. Maybe it was just a simple question.
Well, that was all it took. What I didn’t expect was how this grief looked as it rose out of me.  Yes, it was tears, maybe ugly tears, but with it was beauty.  Questions.  Loving and kind words.  Understanding, connectedness.  Not what I expected or what I prepared for–nothing at all.  Something better.  I talked about Kyanna to people who didn’t know her at all.  But who wanted to hear–and she was alive, if but for a moment in time.

One person asked me about how I see Kyanna since she has been gone-an animal or symbol or image…I couldn’t answer-even though I somehow knew the answer deep inside.  Well today, it hit me on the head.  Literally.

I got home from the scrapbooking retreat.  I unpacked.  I talked to Ayden and Joe about their weekend.  I put my stuff away, watered plants.  Task.  Task.  Task.  One more task-to go for a run.  While I was running I thought about these ladies I met and why I was so emotional.  It dawned on me.  This was the first time I really told my story.  Like for real.  Like not to people who already kind of knew.  But to people who had no idea, and then you give them this glimpse of you.  Like the real you.  The different you.  And they were ok with that.  They accepted that.  I am thankful.

Well, as I ran, I cried. I choked.  I made those horrible gasping sounds that usually you try to hide.  The gravity of opening up this weekend was exhausting.  Cathartic.  Exhausting.  Good.  Difficult.  Again, a study of polar opposites.  Paradoxical.  A piece of dry toast that got stuck.  As I ran, it all came out and I knew I needed to write my story down.  As I got nearer to home, I cried more and let myself go more, gasping and choking and crying.  I got near my neighbor’s house and that was when it happened.

Something BIG hit the brim of my baseball hat.  It startled me…what was THAT!  I ducked and moved, quite ungracefully, to the side of the sidewalk.  I SPAZZED and flailed my arms.  But then I looked up and I saw it–an enormous, beautiful dragonfly had given me a gentle reminder, a little nudge on the brim of my Brewers baseball hat…. then floated it’s way up and over my neighbor’s house… and into the woods.

There’s the answer to that question.  Thank you Kyanna.  I will tell this story.

The memory garden

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Today marks 14 months.  It is ironic in a way that you mark the passing of a loved one as you would the raising of a baby.  Often in the first few years, everything is measured in weeks and months.  Soon it will be measured in months and years, and finally just years.  Like on the past 3rd’s of every month, we have blueberry muffins.  It doesn’t matter where we are—we always make sure to have blueberry muffins on the 3rd.  Sometimes they are healthy, sometimes they are not, but they have blueberries all the time.   This is one of the many memories that we have of our sweet daughter though it is not the only one.

Memories that last a lifetime are often imbued with emotions.  The association with a time, place, or event is remembered better when you felt something at the time of the memory.  In my experience that can be any emotion, whether good or bad.  Often times when I think about Kyanna the emotion that I feel is loss and pain.  I remember things that I don’t want to, things about the way she was—though she was none of those things.  I remember the horror in her face as her lips turned blue and she struggled to breathe.  I remember forcing myself to watch as she got worse and worse because I couldn’t do anything else but watch and be there.  I remember holding her as she took her last breath.

Spring is a time of renewal.  It is when new life can start.  It is the season to plant something.  I look at my memories and see them as a garden in mid-summer.  Mixed with the things that I wanted to plant, there are weeds everywhere.  The weeds are the memories that I don’t want.  They are the ones that are overcrowding the memories that I am trying to find, the ones that seem to be lost, but they are not.  Unlike a garden where you can pull out the weeds, you can’t weed out memories.  They are always there.  To get rid of the bad is to also get rid of the good, and to do that is to forget.  So instead I can, at times, sift through the weeds and see the flowers that Kyanna planted for me.  These are the memories I want to hold on to.  Memories like her first time at the sea, or the time that she gave me all kinds of kisses for no apparent reason as we walked across the parking garage to go to her treatments in Spain.  I want to remember her constant talking, though sometimes I thought it was a bit much.  I remember her giggles and laughter and the way she could make me laugh, and I remember her cuddles.  Those memories are the flowers I want to see, though often they are lost amongst the weeds.   Hiding under the pain and the loss.

I would like to say that I am good at finding flowers in my garden of memories, but the truth is I am not.  Maybe in time I will be.  For the limited things I know of plants, I do know the ones that you feed will grow more than the ones you don’t.   But no matter how much care you give your flowers there will always be a weed or two that crop up, which I guess is the cost of keeping the flower.  If that is the case then so be it, I think the flowers are worth it.

The insanity of it all

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Kids should not get cancer.  There is something that is fundamentally wrong with children getting cancer.  Some kids that get cancer can and do recover for a time and some don’t recover, some die.  For those that don’t make it, days like today are hard.  Today Kyanna would have turned 9.  So the obvious question is then why do they have cancer?  Ask a doctor that if you find yourself in that situation.  Ask them what caused the cancer.  I did.  The answer that I got back was. “we don’t know.”  Have you ever wondered why it is that they can’t tell you how you got cancer, but they can tell you how they are going to treat it?  How is it that you can treat something if you have no idea how it got there in the first place or have any idea of what caused it?  Kyanna’s cancer was caused by environmental factors, I have no doubts about that.  Her exposure to EMF’s was one, and in my opinion, the biggest reason for the creation of Flutter.  Although it may be just my opinion, from Kyanna’s medical records I can show what she had issues with, places that had harmful EMF levels that she was regularly exposed to, as well as the published research that ties it all together.

To summarize Dr. Raymond Hilu in the book Cancer Killers he states that, “unless you address the underlying causes of cancer, it will come back”.  However, in the US that is not the approach most often used.  In the US we are quick to get a prescription for a drug to address a problem with our health.  That drug will never fix the problem, it will simply mask the problem and possibly create other problems that need more fixing, which means more pills.  Case in point if you are impotent you are not that way because you have a deficiency of Cialis or Viagra.  If you are depressed it is not because your Prozac levels are low.  Headaches and migraines are not caused by deficiencies in Tylenol.  Nor do you have pain from low opium levels in your system.  ADHD is not caused by a deficiency of Ritalin, nor is insomnia caused by not taking enough Nyquil.  Your sinuses are not congested because there is not enough Sudafed in your diet.  Not having a steady supply of Clomid is not the reason for your infertility.  Your blood pressure is not based on your metoprolol levels.  This list could go on and on, but know that everything that is in italics is something that the US Navy recognized in 1972 in this document Naval-Medical-Research-Institute-1972-Full-Bibliography as possible effects from microwave and radio wave sickness.  I only listed 8 of the 131 items listed in that document which has over 2300 references.  If there is nothing to fear from microwaves and radio waves, then why need to compile such a list?  This is not the only document of that time that contains this material, you can also read the book Electromagnetic Fields and the Life Environment by Karel Marha which has the same findings.

You might wonder why I refer to something that is more than 40 years old.  The truth is to show that this is not new.  Since it is not new there are no reasons for the powers that be to let this continue, but they do.  There have been numerous research papers since the 70’s up to the present to show the ill effects of EMF’s and it would seem that they all have fallen on deaf ears.  Furthermore, some of that research was done by our own government.  To summarize the ill effects of the of electrical expansion based on data you can read this hypothesis Milham-Historical-Evidence.  In that paper Dr. Milham states that with the electrification of the US you also see a rise in cardiovascular disease, cancer, suicide, and diabetes.  Do any of those sound familiar?   When it comes to high frequency voltage transients, they too can cause cancer as stated in this epidemiology report which you can read Milham-Morgan-2008.  In that you can read that the people in that school exposed to levels >1000 GS from an outlet had a 13% higher chance of getting cancer.  Readings that were >2000GS in a room from an outlet had 26% higher chance of getting cancer.  As much as you would like to think that this was an extreme case, you can find such readings in many, many homes and work places.  Kyanna’s classroom has outlets that are >2000 GS last I checked, as well as many other classrooms in that school building.  If you have ever had a doubt about the safety of cells phones or other wireless communication I would urge you to read Overpowered by Dr. Martin Plank published in 2014.  In that book you can read that individuals living within 400 meters of cell phone transmission tower for more than 10 years had a three times higher rate of cancer than someone that lived over that distance.   As of July 1, 2012 there were more than 480,000 cell phone towers and more than 1.5 million antennae’s just in the US.  (If you would like to see the towers near you search for them at antennasearch.com) In addition to research and books, there have been organizations that have been formed to deal with this growing problem like the BioInitiative, formed by leading scientists from around the world.  They all speak out to alert people of the growing danger.  They look for people to listen, for leaders to at least consider and set safe guidelines.   But how many of us listen, how many act?  I didn’t, not until I was told Kyanna had cancer and I was left wondering why.

I am not saying that just because you are exposed to EMF’s that you are going to get cancer, but I will say that EMF’s have an effect on you.  Much in the same way smoking has an effect on you in that you don’t have to be the one smoking for it to harm you.  The odds of you getting cancer from smoking one or two cigarettes would be about the same, I would guess, from being exposed to one or two EMF’s.  The problem is that we are exposed every day to harmful EMF’s.  Some of us 24 hours a day 7 days a week.  With that type of exposure what do you think the odds of EMF’s having a negative effect on your lives will be?  How much can your body handle?  With smoking and EMF’s the key is exposure and limiting it as much as possible.  Everyone will react to everything differently.  However, in both cases prolonged exposure will increase your risks so limiting or avoiding exposure as much as possible for a better quality of life will always be suggested.

Insanity – the result of doing the same thing over and over again and expecting a different result.  This is most widely accredited to Albert Einstein, and as a physicist much smarter than me, I am going to give him credit.  Kids should not get cancer.  However, they are still being diagnosed with cancer–some are winning, some are not.  All the while we continue on changing nothing and wondering why a 7-year-old gets brain cancer.  If you never address the reasons that people or children get cancer, it is going to keep happening.  It is not a question of if, it is a question of when.  To think otherwise is quite honestly the definition of insanity stated above.

New Years

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There are have been many questions asked over the last year that are simple and innocent in nature, but they are so very hard for us to answer.  The most common is how many kids do you have?  I always answer 2.  When they ask how old I give Ayden’s age and say the other is in heaven, she was 7 almost 8.  Just because she is in heaven doesn’t mean she was never here or that I love her any less than I love my son.  I love them both equally but in different ways because there are many forms of love.  I love my daughter by remembering, wearing her necklace and ashes, by trying to make a difference with something she had problems with, and by making sure she is present in all that I do.  She is still a part of me.  I hang on to all of her items, her pictures, the home movies, and all the memories I have of her.  My love for my daughter is shown by hanging on no matter what.

I love my son as much but differently.  I know what is in the world, the dangers of it, and all the harm that can enter your life at a moment’s notice.  My love for him is shown in the way I don’t hang on, but let go.  I let him into the world.  I try and teach him all of the things that you can’t find in a book or school.  These are the things that matter.  Most of these are simple things like manners and being respectful.   Some are harder like that you should do what you think is right, because it is right regardless of the costs.   The hardest is what money can and can’t buy, because as you get older this one is what people forget the most.  I don’t try and hide him to protect him, I try and arm him as best I can and prepare him so that he can be part of this world, because I love him.   I shield him as much as I can until he is old enough to stand on his own, and then hope that life is kind to him.

Today is our New Years, there are no parties or joyous celebrations.  There is just remembering, eating blueberry muffins, and eating sherbet.  When I gave my daughter’s eulogy I talked of the disproportionate balance that I felt and a need to compensate for it in some way.   This website and what it stands for is a testament to that.  However, it is just merely a start.  As we work towards a balance, that for us will never happen, I hope that the information you have found and will find makes a difference in your lives.  It has made a difference in ours.  Happy New Years.

Starting off….

I am up at 5 am this morning, thinking about my girl.  Thinking of how she would have loved this time of year and all that goes along with it.  And how it is so hard not to have her here with us.  How we will get through the holidays with her as an angel is something I wake up everyday and think about. We have a grief retreat today and that will be good.  Good to spend time figuring out how to live a new life, a different life, maybe a new purpose in life.

We shy away from new, from change.  It seems that daily, my life is just that–new, change, different.  Those of us who can somehow figure out how to navigate that may someday consider themselves “happy”.

Happy.  We seek it.  It is our goal.  Do many achieve it?  I think we look at it the wrong way, but I need daily reminders of this. Happy.  Not a goal, but a way of being.  Enjoying the process, not the goal right?  Easier said than done.
Happy.  It seems that sometimes I have forgotten how.  I will remember.

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