What Does Purple Day Mean to You?

This was a question posted by SUDEPaware, http://www.sudepaware.org/.  I didn't respond to them because for the week leading up to 3/26 I didn't know.  Now I do.

Purple Day, for epilpesy awareness, makes me feel left out.  Jeff didn't have epilpesy (maybe).  Who knows?  He only had two seizures.  Maybe if he'd survived the second one he would have received this diagnosis, maybe not.  However, Jeff died from an epilpesy-related cause so I have some affiliation with epilepsy.  I just don't feel included.

I don't have years of epilepsy stories, experiences with doctors, tests, etc.  I don't feel linked enough to do the Epilepsy walk in April.  Yet, I have a close kinship to those who have lost a loved one to SUDEP as I have.  Jeff may not have had epilepsy but he still died from a seizure so I am latching onto, tentatively, Purple Day.

My children and I wore our purple "Team Jeff" shirt from the Joshua Newman 5k (http://thenewmans.blogspot.com/2012/11/after-months-of-planning-by-so-many.html).  I changed my facebook profile picture and posted two pictures about seizures and purple day.  Even though it was also "Marraige Equality" day, a cause I wholeheartedly support, I had to choose one and it was epilepsy.

This is the first year I am aware that 3/26 is purple day.  I'm not surprised that it escaped me last year, it's exactly one month after Jeff's death.  I don't know that I was functioning with any part of my brain at that point.  Now, 13 months later, I can recognize that there is a bigger picture. 

This isn't just about Jeff, this is about everyone who has lost a loved one due to seizures either through SUDEP or other means.  We are all hurting in our own ways.

I knew that epilepsy was a medical condition, I did not know that there was a "stigma" attached to it.  Nor did I know that it could be fatal.  What I can't condone is that a doctor made a choice about what I should or should not know about this condition and that choice directly lead to Jeff's death.

Purple day is here to remind us that epilepsy is a medical condition that can often, but not always, be maintained through medication.  It can also be fatal.  Never underestimate the power of any medical condition to rob you of your life.  Educate yourself if you or a loved one has seizures.  Learn about SUDEP, learn the risk factors, learn about sleep monitors, try to protect yourself from a loss like mine. 

If you don't, you will never forgive yourself.

Sincerely,

Jeff's Wife   

Picking at the Scab

We've all done it (or still do): picked at a scab and ending up making it bleed freely again.  Then trying to be extra cautious to leave the wound alone and let it heal only to rip the scab off again either intentionally or unintentionally a few more times.

Grief is often like that.  You are wounded but the mind and body try to heal itself.  Not a scab exactly but an empty place in your head that keeps you from thinking about your loss.  Then something comes along and rips the wound open again: bleeding those memories back into focus.

In the beginning everything did that to me.  Going to church, a song on the radio, kind words spoken by friends, even poison ivy (you'll understand that later when I get to the post about our first date).  Everything reminded me of Jeff and thus everything reminded me of his loss and the pain I was in.  It's overwhelming and exhausting.

One thing that hit me was how much of my life was intertwined with Jeff.  I know I was married to him, but even things from "my corner" of the world at work would make me think of Jeff.  Nothing was safe.  Jeff and I spent a lot of time together, most of our leisure activities were together, and we talked all the time.  It was not unusual for me to get a dozen emails from Jeff in a day and he'd still call me five times.

I missed having him to talk to and so I filled the air space by talking about him.  My poor co-worker AH, he got to listen to me prattle on and on about my husband.  I had a mostly captive audience and he never met Jeff.  What a perfect opportunity to inundate someone with hilarious Jeff stories!  Every little thing that reminded me of Jeff I would launch into the Jeff story.  I can't begin to explain how helpful this was.  I got to talk about Jeff almost non-stop to someone who'd never heard the stories so I wasn't boring them.  I have no idea how AH feels about hearing all these stories because he knows Jeff is gone.  But he's listened right along and never given me the impression that I'm making him uncomfortable because I'm talking about my dead husband.  I'm lucky in that regard.

Less and less reminders crop up unexpectedly now.  It could be a letter in the mail, a notice from someone trying to LinkedIn with Jeff, or an early spring snowfall that reminds me of how Jeff would plow our driveway. 

This means that I make a few forays into thinking about my loss intentionally.  Partially by writing this blog, it dregs up my grief and reminds me to feel my pain not bury it.  Sometimes it's watching the screen saver on my computer scroll through pictures of Jeff.  Almost 90% of the pictures of Jeff with the kids so it brings forward another side of my grief: the loss of the father for my children.  I recently went back around my home and hung up pictures of the family.  I have a picture of Jeff in almost every room of the house.  It may be painful for me, but it's good to hear J2 say "That's my Daddy".  Or J1 say "That's a picture from when you got married." 

They need those pictures.  I need those pictures even if it rips open my wounds.  I hope that soon I can organize and display even more...

Sincerely,

Jeff's Wife

In Case of My Death

I know I make a few folks uncomfortable.  I talk about grief.  I talk about Jeff.  I believe that this entire process would be harder on me if I kept everything inside.  Besides, I've never been that way.  I've always been more of an open book kinda person.  I have a goal and that is to educate people about SUDEP, it's vitally important and I'm stepping into the role.  I also have a secondary goal: getting people prepared.

This is all the stuff no one talks about.  Wills.  Life Insurance.  You know: the really sexy talk.  But it's so important.  I know a few friends that were galvanized last year after Jeff's shocking death to formalize their wills.  I urge everyone to do one.  Yes, they cost money.  Yes, a will is worth it.

Look at Jeff.  He is proof that a healthy young man can die suddenly and leave behind a wife and two small children.

When I was pregnant with J1, Jeff bought life insurance.  He'd read somewhere to pick an amount that would cover all your debt should you die.  If you don't have life insurance, buy some.  If you have life insurance make sure you have enough.  I can tell you from my standpoint.  What we had on Jeff was not enough.  Think about what you want to accomplish with the money.  Pay off the house?  Send the kids to college?  Live on for a few years while your kids are young?  This is a big decision and is worth asking around and getting expert advice from a financial adviser.  I currently have three times the amount of life insurance on myself as we had on Jeff.  I am now a single mother and my children would be orphans should I die.  What do they need?  What will their new guardian need in order to raise them for the next 15 years?  And you know what?  It probably still isn't enough.

When I was pregnant with J2, we finalized our wills.  (Notice a theme?  LOL).  Something about having children gave Jeff a real kick in the responsibility rear.  A will does not need to be complicated for most of us.  The important thing in our book was designating a guardian for our children.  When I re-did my will last year after Jeff died I picked a guardian and three back ups.  No, there isn't much that could make me believe that SL would turn my children down.  But what if she had cancer?  What if her husband died suddenly?  There are life events we just can't predict.  You need back up.

And I add a third requirement.  A dialog so to speak of "what to do in case of my death." I have to admit, it would have made things a bit easier if I'd had a document like this from Jeff.  I think I did alright with his memorial service and I know he's tickled with the Harley urn.  But what to do with his ashes?  I don't know.  I'll never know.  Plus there were little things.  He had pensions and 401K's everywhere.  He never consolidated anything.  It was a nightmare and I'm half afraid I've forgotten something somewhere.  Not to mention computer passwords, Lord.  Don't get me started on the passwords.  Jeff was an IT security guy.  Our wireless router had a 64 digit password.  There were passwords to computers I had no clue what they were.  I literally had to have a friend hack Jeff's computer (if he had a grave he'd be spinning).  Somewhere, somehow have all your passwords.  Write them down, put them in a safe deposit box.  You know them, but does your family?  Probably not.

I'd heard that military folks often have a "death file" so to speak so I started one.  It's mostly a written letter to my friend SL who would take over the care of the children and while they are small, would have to divest of the money and the house.  I have included information on what I want in my funeral service, where my bank accounts are, phone numbers of doctors and specialists for the kids.  And any items in the home that are of family or historical value that I would want her to try to save for the kids until they are older.  And Passwords. She will have all the passwords.

Uncomfortable?  That's OK.  Death is personal.  Preparing for death is personal.  Wills, life insurance, death files these are all personal.  But they are also important.  Don't put any of it off just because it's Icky.  Don't wait because funds are tight.  There is always a way to get something accomplished.

Be prepared for the unexpected.

Sincerely,

Jeff's Wife

The Bravest Thing I've Ever Done

There is a Bare Naked Ladies song that says "the bravest thing I've ever done was to run away and hide."

I wish I could say that sometimes.

Instead on February 26th, 2012 I left the hospital, and my husband's body behind, and went home to tell my boys their father had died.

I was sitting in that private waiting room in the ER. My sister was with me, waiting until my in-laws could arrive and she could take the kids. An EMT that had been with me at the house came in to talk. To this day, I don't know what this woman was thinking as she related the story of conducting CPR on her father but that he died anyway. I remember thinking how inappropriate it was that she was telling me her sad story when I didn't know what was going on and it laid the groundwork of fear in my heart that this wasn't going to have a happy ending.

My mother-in-law arrived and after a small fight with my sister, my sister left so that my father-in-law could join us. Before Jim could join us, a doctor arrived. He said they had been unable to revive Jeff and "whatever had happened he didn't suffer." He barely finished those words when I shot out of my seat and went to the door saying "I need to see him". I didn't want to talk to this man, I didn't want to hear what he had to say, I wanted to see Jeff and I headed in the general direction that I'd last seen him. The doctor tried to stop me in the hall but I wasn't going to stop. There was nothing left to talk about.

I didn’t wail.  I cried, I assure you I cried, but I didn’t throw myself down and scream. I sat next to Jeff and it was like the lights had gone out.  I was suddenly numb.

I remember when my father-in-law arrived, I remember him calling family, I remember when my sister returned and that my best friend SL arrived. I sat with Jeff as the hospital coordinator came to talk to me.  I signed forms.  The police officer came in and informed us there would be no further review of the case.  I signed more forms.  At one point, I called my friend from church BA in order to reach our pastor who was just getting out of Sunday service.  I had to leave her a message.  What a terrible way to tell someone their friend had died.  Then I called Jeff’s best friend BT.  I remember that call clearly.  The last BT had heard from me was a text that morning saying that Jeff had another seizure but was fine.  Now I was calling to tell him Jeff was dead.  I then did the most cowardly thing imaginable.  I asked him to start informing friends.  I couldn’t do it.  I knew the hardest job, telling my boys, lay before me at after calling BT I was done.

Around this time I was informed that the hospital was not going to conduct an autopsy.  This seemed very out of place considering at that moment in time we had no idea what Jeff had died from or why.  SL took charge, calling his primary doctor to see about getting someone to order an autopsy.  She battled with this task for two days before admitting defeat and we ordered a private autopsy.

SL’s husband, TL, took the boys from the hospital parking lot, and to this day I think he is a saint. He wrangled 4 kids, took them out to pizza, tried to get my youngest to nap, endured the "crazy spray" of my youngest as he was potty training, and generally kept the kids calm all the while knowing his friend had died. That isn't easy, doing what he did, and I know it.  He will always hold a special place in my heart for sheltering my boys that day.

I don’t know how long we stayed at the hospital, but I think it was close to four hours.  We all left shortly after the Pastor’s arrived.  My in-laws Pastor got their first and mine was close behind.  A few prayers a decision on which church to hold the service and then it was time to leave.  My Pastor followed me home so that he could be there as I told the boys about Jeff.

I arrived home just as two friends were pulling up, AR and her husband PR, both had been with us just the night before at the Monster Truck show.  I couldn’t spend much time with them as I was headed inside to speak to the kids.  I felt bad to turn them away, I know they were hurting too.  But the timing was just bad at that moment.

I walked in, my youngest was sleeping.  My oldest was sitting on the couch.  Curled up with his lovey, a small stuffed horse he calls Moe.  He had a look on his face that said he already knew something bad had happened.  I knelled down in front of him and told him that Daddy had died, and went to heaven.  I answered all his questions even when they were “why did Daddy die?” and I had to say “we don’t know”. 

The rest of the day is pretty much a blur other than the call I received at 6:30pm that night a call asking me to donate Jeff's tissues.  Why they called I don't understand.  We were at the hospital for HOURS wouldn't you want to ask this question in person?  A phone call is a terrible way to try to accomplish a very noble task.  As much as Jeff would have wanted to help others I had to think of my children.  We still did not know what had killed Jeff and I needed an autopsy.  I had to say no.  I hung up the phone and threw myself down and wailed.  Screamed into a pillow.  It was like that call unleashed a dam inside.  I would now feel the pain again.  I have hated that transplant group since.

On February 26, 2012, I informed my children that their father had died and I've been irreparably marked by that day since.

Sincerely,

Jeff's Wife

Ashes to Ashes

Some days I have a hard time accepting that Jeff is gone.  I know it, I feel it, but I can't figure out how it is possible.  My mind takes a break from reality.  I start to wonder if this is a parallel universe, like in the movie "Sliding Doors" with Gwenyth Paltrow.  One second that can change your life.  If I had stayed in bed with Jeff and not gotten up to take a shower this would be a different life I was leading.

What brings me back from this problem is The Urn.

Yes, that is a replica of a Harley Davidson gas tank.  What on earth possessed me to buy it?  The answer is simple: Jeff.  Four years ago we were making our wills and there was a secondary sheet that had questions for your funeral preferences.  To be honest we didn't pay attention to it, didn't fill it out.  But something must have spoken to Jeff (or he was just bored at work and ran a random Internet search) because a few days later he told me about an urn shaped like a Harley Davidson gas tank.  I laughed at him and told him there was no way I would ever buy that for him.  Of course, that was up until the day after he died and I needed something to place his ashes in.  My father in law quietly asked me if I had any ideas and I told him about the Harley urn.  I knew it would be expensive but I didn't care at that moment.  I just knew that Jeff would have wanted it and I couldn't imagine anything else to hold him.

I go to The Urn when I'm having a moment of nonacceptance of my new life.  I lay my hands on it and sometimes talk to Jeff.  It is a harsh reminder that it is all real.

These moments have also lead me to the thought of what to do with Jeff's ashes.  I know I cannot keep them forever.  One third of the homes in the US have ashes of a loved one stored within.  Some are in boxes hidden in closets others are placed prominently on the mantle.  At first, I kept Jeff's urn in my room.  After about 3 months I decided it wasn't healthy for me to have it so prominent and evoking my grief before bed and I moved the urn down to the living room.  I also decided that I needed a place for Jeff to rest permanently that was not within my home.

This is a hard decision and one I haven't carried out yet, but I know it is coming.  What to do with the ashes?  Jeff never said he wanted his ashes spread or where.  He was young, why would he have that thought?  So now I have to make a choice without any input from him. 

My first thought was that he would want to be spread a the Daytona Speedway.  However, I got to thinking this may not be legal and it wasn't going to be an easy place to visit.  We live 13 hours away so if we wanted to "visit" it was a long haul.  I started to think about what it would mean to my children to have a location to visit.  This came into the forefront at the one year anniversary of Jeff's death.  With the urn in my living room there was no special place to visit that day.  No grave site. 

I am considering EcoEternity Forest (http://www.ecoeternity.com/eco-eternity-forest-home.html)

A natural cemetery for ashes so to speak.  You buy a tree and with it a plaque that is placed on the tree.  Your ashes are then buried in a biodegradable box under the tree.  The trees are in a preserved and managed forest.  You can buy a family tree or buy into a "community" tree.  This will provide us a place to visit.

I haven't moved on this idea because it is frankly, more me than it is Jeff.  However in discussing this option with friends I was moved by their response.  Jeff would want what was best for the children and to be with me and if this is where I want to go then so would he.  I believe that, I do.

I picture a day outing, taking the kids to run through the forest and pick a tree for Daddy.  When I am ready.  But for now, The Urn will remain in my living room.

Sincerely,

Jeff's Wife

How Do You Not Hate Me?

The day after Jeff died I did the only thing I had control over.  I cleaned my house.  If you remember, Jeff had left behind a layer of drywall dust over every square inch of the house.  Cleaning served two purposes: getting rid of the drywall dust and giving me something to do other than thinking about my situation.  I wasn’t up to planning the funeral, talking to anyone, or thinking about my future.  I was incapable of those things partially because I had not slept a minute the night before and also, let’s face it, I was still in shock.

I was working in J2’s room when my in-laws arrived.  My mother-in-law GC was walking up the stairs when I blurted out “How do you not hate me?”

You see, I fully expected them to blame me for Jeff’s death much as I was blaming myself.  I expected them to hate me because I hated myself.  It’s simple really.

Instead she grabbed my arms, shook me and said “don’t ever say that”.  She didn’t blame me for Jeff’s death and we had a long cry.  I am lucky in that I have good people for in-laws.  Both are people that I like and who have always tried their best when it comes to having a relationship with me.  This one moment goes a long way in my mind in determining our future relationship.  By not blaming me, when I felt they had every right, they set the path we are on now.  We are close because we lost someone we love.  We are close because of their two grandchildren I am raising.  And we are close because we simply want to be.

What I worry about is the thought that my children may not be so forgiving in the future.  Will they blame me for Jeff’s death?  Will they understand why I left the room?  Will they have the peace of mind from God or years of mental health therapy to know that some things cannot be changed?  I will find out one day.

Sincerely,

Jeff’s Wife

When Fear Arises

Less than two weeks after Jeff died, my youngest son J2 then three years old fell on the playground and bashed out his two front teeth.  This wasn't a big surprise. J2 has always been a bit clumsy and is usually covered in cuts and bruises.  Yet he is rather hearty so after he fell he popped up and said "I OK" and ran off to continue playing.

A friend of mine HG had him at the playground that day and had called and said she thought he'd chipped his tooth.  Well, when she got a better look at him she realized he'd done more damage but at that point they were headed home.  I have since spent a great deal of time assuring her that he would have done this even if I had been there, but like any good person she feels some guilt for returning my son minus his teeth. 

That afternoon I took him to the dentist and had both teeth pulled.  They were broken vertically and had to be removed.  Two weeks later he had fake teeth.  The fake teeth are a bridge, imagine a retainer that glues to the back molars and the two front teeth hang off the wire in the front.  The teeth have worked great.  He has loved them and hasn't given the retainer any problems.

Until three weeks ago, when J2 climbed up on his toy box while by back was turned getting his pajama's out of his drawer.  Jumping off the box he hit his bed and snapped a fake tooth off cutting his lips in the process.  Tears and blood and of course it was 7pm so the question was where to go.  After finding a 24 hour dentist not far from the house, I figured they would remove the retainer.  However, they filed down the rough edges and took an x-ray to make sure that he didn't break anymore teeth.  I left with the advice to go back to the pediatric dentist and get a new retainer.  Of course, scheduling with the dentist took a week.

The following Monday night J2 did not joining me for dinner.  J2 was under the pillows on the couch.  I called and asked and figured he was just being stubborn so I left him alone.  After I finished eating I got to wondering if he had fallen asleep.  I went over to check on him.

His eyes were open so I knew he wasn't asleep but he still didn't respond to me.  As I knelt down and got closer I realized his jaw was clamped closed and a small amount of spit had gathered.  He still didn't respond to me.  I panicked. There is no description that fits better.  I was suddenly struck with the belief that he was having a seizure.  I pulled him out from under the cushions and within seconds realized that it was not a seizure but that he had bent the retainer and it was pinching his cheeks causing him a lot of pain.

Why a week later he did this, I don't know.  Why he didn't come and tell me, I don't know.  But he is four and at four, he went and hid.  I rushed him off to the pediatric dentist (our appointment was still 3 days away) and this time had the retainer pulled out.  We had another mold taken for another set of fake teeth since we are still two years away from getting his adult teeth in.  His new teeth are not in yet, but they will be soon and he will be right as rain.

I learned a lesson that night.  I learned that fear is as elemental as air and always within my grasp.  After what I experienced with Jeff, what would be my greatest fear other than to loose my children the same way?  Do I dwell on this?  No.  But does this fear find a way to come to the surface?  Yes.  Both of my boys are healthy, neither has shown signs of having a seizure condition.  But that won't stop this fear from formulating in my mind.  When I saw J2, unresponsive, eyes staring forward, mouth clamped shut.  My first thought was seizure.  And I will probably jump to that conclusion a million more times in the course of his lifespan. 

What I can do is tame that fear, tamp it down after it arises and master it.  I didn't scream, I didn't cry, I was able to determine within seconds that this was not a seizure and then I mobilized to solve the problem.  I can do this. 

Fear is not the enemy your response to fear is.  If I were to let my fear overwhelm my life I will be useless to my children.  This is not an option for me, I refuse to effectively make my children orphans because I am afraid. 

But I am afraid, I am very afraid.  No matter what I say and do, know that deep down in my soul I am desperately afraid and I will be up until the day I die.  I am a mother, I have known love and I have lost love.  To risk love is to risk fear.  I didn't know this when I became pregnant but you open yourself up to a lifetime of fear the moment the stick turns blue.  Will you miscarry?  Will the baby be OK?  Will you suffer from SIDS?  Autism?  Medical issues?  Death?  I've said this before and I will say it again, in order to live life we have to set aside our fear.  But it doesn't mean it isn't there.

When I met Sherri Newman who lost her 12 year old son Joshua to SUDEP and author of Laughter through Tears (http://thenewmans.blogspot.com/)  she said to me "I won't say you're strong because I know how we hate that word, but you are brave."  Brave: to endure or face (unpleasant conditions or behavior) without showing fear.  Yes, I am afraid.  But when that fear arises I am also brave.

Sincerely,

Jeff's Wife

"I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear."

Nelson Mandela

Can't Take My Eyes Off of You

I was having dinner with some friends. My friend AR had a girls fondue night and the evening was going well. Then over Pandora, I heard the song by Bobby Darin, "Can't Take My Eyes Off of You".

The song Jeff and I danced to at our wedding. It isn't a common song and I was surprised to hear it. I quietly asked AR to change the channel and she did so without question. But the rest of my night was off I suddenly realized I was sitting with 5 women who had husbands and their families were intact. I cried all the way home.

You may not know this, but Jeff couldn't dance. Shocker, I know. But really, he couldn't. The good thing was, he knew this. So, when it came to wedding planning. Jeff had an idea. He took dance classes.

Wait let me rephrase that. 

Jeff hired a dancer to choreograph our wedding dance.  Yes, that is the right way to say it.  We went to weekly lessons where the dancer choreographed our dance and we practiced the moves.  It was fun, I will admit that.  Jeff tried very hard and I loved him for trying. 

I remember one night when we were practicing the big dip in the dance and the choreographer told Jeff that he should remember to do this periodically in our marriage.  That it was a “swoop” and he should remember to do it to “swoop me off my feet” and be romantic.  The thing is: he did remember that.  He would at times try to dip me over and risk dropping me to the floor but I knew what he was trying to do and it was always romantic even if I was laughing at him.

Everyone at our wedding loved the dance and it went off without a hitch (the dance did, not the wedding but that is a different story).

I cried that night remembering the words to the song:

You're just too good to be true
Can't take my eyes off you
You'd be like heaven to touch
Oh, I wanna touch you so much

At long last love has arrived
And I thank God I'm alive
You're just too good to be true
Can't take my eyes off you

Pardon the way that I stare
But nobody else can compare
The sight of you makes me weak
There are no words I can speak

And if you feel as I feel
Oh, let me know that it's real
You're just too good to be true
Can't take my eyes off you

I love you, baby
And if it is quite alright
I need you, baby
To warm up my winter nights
I love you, baby
So trust in me when I say, when I say

Oh pretty baby
Don't let me down, I pray
Pretty, pretty baby
Now that I have found you'll stay
And let me love you, baby
Come let me love you

You're just too good to be true
Can't take my eyes off you
You'd be like heaven to touch, mama
I wanna touch you so much

At long last love has arrived
And how I thank God I'm alive
You're just too good to be true
Can't take my eyes off you

Oh, you're just too good to be true
Can't take my eyes off you
You're just too good to be true
Cannot take my eyes off you

You're much, too much to be true
Won't take my eyes off you
You're just too, too, too
Can't take my eyes off you

And you're too good to be true
Will not take my eyes off you, no way

Sincerely,

Jeff’s Wife