"You know, her husband died?"

I stopped to talk to someone briefly and as I walked away I heard her say to a person next to her "you know, her husband died?"  My feet faltered a bit, but I didn't look back and I didn't stop moving.  Not that what she said was wrong, it's true.  It's just I don't think of people talking about me.

And that isn't to say that you can't talk about me.  In some ways I want you to.  If you talk about me, talk about Jeff, talk about how he died.  Tell people about SUDEP, tell people that seizures can be fatal.

In the month from Jeff's first seizure to the one that took his life we talked non-stop about Jeff's seizure to everyone.  We got a fair amount of feedback too:

"my mother has epilepsy"

"my college roommate has epilepsy"

Not one person had a story where someone died.  Not one person told us that seizures could be fatal (other than driving accidents). 

There were over 600 people at Jeff's funeral.  How is it that out of 600 people NO ONE knew he could die from a seizure?  How is it, I didn't know?  Even the two people closest to us, our mothers -- both nurses -- had never heard of this condition.  Why is this a secret?

Unfortunately, in so many things in life, you have to be your own advocate.  Knowledge is power.  Knowledge is life saving.  If you talk about me, talk about Jeff.  Tell people how he died.  Tell people about SUDEP so that they can arm themselves with knowledge.  So that they are not blindsided by death the way my family was.

Sincerely,

Jeff's Widow

Five Years Ago

My baby turns five today.  It doesn't seem possible.  When I was in the trenches of babyhood with another toddler on my hip I was daydreaming about the day he turned five.  Five meant kindergarten (we have all day kindergarten here).  Now he's five and I want to turn back the clock.

I don't think anyone believed me when I said I was in labor.  See, I'd had a few "false" calls in the weeks prior.  Not my fault really, I'd been in "light" labor (yeah right) for weeks.  A single contraction every 20 minutes.  It made it hard to figure out if I was in labor or not.  But the night of the 14th I was pretty sure I was in labor.  My contractions were harder and getting closer together - I was a bit shy to pull the trigger on the labor call.  I hate crying wolf.  So I was a very nice wife and I let Jeff sleep. 

Jeff had the start of a cold and was not feeling well, plus I knew from our first baby that he would be doing the bulk of the hospital work while I recovered from the C-section.  So I let him sleep.  He got up for work that Monday and showered and I came into the bathroom and asked him just how important his meeting was that day.  I got a suspicious look and a question of "why?"

Jeff was a smart man and a smart man does not question a very pregnant lady who insists she is in labor (not if he wants to keep that body part men are fond of).  So, while just about everything in his demeanor said he didn't buy it.  Jeff never said a word against me and took us to the hospital.  As time progressed a bit and he could see how often my contractions were coming, he came around to believing it as well.  I can still remember his first phone call to the grandparents "It really is going to happen today!  We just don't know when..."

My favorite pictures of the day are those of Jeff introducing J2 to J1.  They really are special.  J1 had been so excited about the baby but I think the hospital and all the tubes I was attached to scared him so he really clung to Jeff on that visit.  There is an amazing picture of J1 holding J2 with the biggest smile on his face.  If you look closely you can see Jeff's arm in the background as he was holding on as well but he picture is cropped in close so that you think J1 is just holding J2.  It's special to me.  Because of the love on J1's face.  But also because of the care and attention Jeff showed by hovering so close to J1 while he held the baby.  Poor Jeff was sick as a dog when J2 was born but he powered through the hospital stay like a champion.

This is J2's second birthday party without Jeff.  I think of how Jeff loved the kid parties how excited he was over the big birthday celebration.  Birthdays are a big deal for my boys. They actually get two parties, the kid party and the family party.  It's a lot of work but it's a tradition Jeff set up that I am loathe to part with.

My baby turned five today and I am trying my best to find the joy in the day today that I had five years ago.

Sincerely,

Jeff's Widow

Be Afraid... Be Very Afraid

Shortly after my power came back on after a 2 day black-out I got a call from my son's OT office.  Our insurance denied a few visits.  Hmmm... that's odd.  What gets worse is that my health insurance told them I was no longer covered.  Huh?  It felt like an ice cold spear penetrated my chest.  I was shaking.

I went through this mess 3 months after Jeff died.  I was not looking forward to going through it again.  I called my health insurance sure enough they cancelled our coverage on November 1st.  Which I find odd, because I have been paying my bill regularly.  No explanation.  No letter to me saying that they cancelled me.  Just they did it - like it's no big deal.  Blink, press a key strong and bing you are no longer covered.  Do the insurance folks have any idea what this does to people?  So I needed to call COBRA and work it out with them. 

Great, because I did this before and it's a whole lot of he-said-she-said and passing the blame to the other party while I spend gobs of time trying to fix the problem.  This prospect does not make me happy.

What is tough is that anything like this sends me into a total tailspin.  I didn't used to be this way, but I am now and this is why: after telling the story about J2 bashing his teeth out (http://survivingaftersudep.blogspot.com/2013/03/when-fear-arises.html)
and I remarked that I had a bit of a freak-out, my friend Sherri who lost her son to SUDEP, remarked that it "could have been a hang-nail and you would have done the same."

And darn tootin' she was right.  I just can't handle anything out of the norm.  Because I didn't just have the rug pulled out from underneath me.  I had the rug pulled out and then I was put on a tight rope over quicksand.  I am balanced and hanging on.  But I am not comfortable.  And any little thing: any little thing unbalances me.

Now, I am a force to reckon with on a good day.  And I don't mean that in a good way, my attitude is a liability.  So imagine if you will the poor sap on the other end of the phone with me.  If my voice could kill (like the ladies in the movie Dune), they would have been goners.  I have looks that kill.  I have a voice that pretty much tells you in no uncertain terms that I think you are a bloody idiot and would be better off in a different job.  I strike fear.  I am sometimes surprised to discover that I scare people without trying.  It's a gift.

A battle has begun in this love/hate triangle of COBRA/my health insurance/and myself.  I will be victorious, but I hate the time and effort and true nastiness that I will resort too in order to be the victor.  The other two in this triangle should be afraid. 

They have wronged me.  They have mentally unhinged me.  I am unbalanced and if I fall: I am taking them with me.

Sincerely,

Jeff's Widow

Snow Days

I can't imagine an "event day" when I don't think of Jeff.  Think about what we did on a similar day.  What Jeff would have done on this day... like Snow Days.

(And not just because I have a tree that came down and needs some chainsaw work.)

But then again, maybe.  I was so accustomed to Jeff doing things like that around the house.  Jeff who was always willing to try to fix something and could read a manual or look up a process on the computer and then know how to do the project.

I don't know about you, but I can't do that on a regular basis.  But Jeff could.  Every time.  He could read a document and then take my car apart, strip it down into pieces to replace something.  He could read a PDF file and take the dishwasher apart to fix it.  The list goes on.  And I miss having my handy man around when stuff breaks or a tree falls on my fence.  Because we were partners.  There were things Jeff was good at and things I was good at and now I have to try to compensate for all that Jeff could do.  Like the stupid tree.  It's a big responsibility.

Shortly after Jeff and I bought our house we discovered that the house inspector was a complete idiot and that there were multiple major issues with the house.  Things that honestly would have made us back out of the contract or dropped the price on the house.  One of those is the non-working fireplace.  The first fall, I had the fireplace cleaned and inspected and discovered that it was in such bad repair that we could not use it.  I got a number of quotes to have the fireplace fixed but then Jeff put a hold on the project due to the cost.  We never got the fireplace fixed.

Now, when the power goes out in the winter (and it does for every blasted storm), I have no way to heat my house.  This was an issue this past snow when I was without power for 2 days.  It served as a reminder that what was not a priority when Jeff was around, may be one now.  I need to do some thinking about changing things that Jeff had a say in.  He was right 8 years ago, we didn't have the money to fix the fireplace.  However, now... I don't have the same resources (Jeff) to take care of my family in a blackout.  I need to make some changes.

But also, there is fun stuff.  I built a snowman with the boys, had a snowball fight, took them sledding (lots of Momma pushing them down the hill, but thankfully they are big enough to drag their sleds back up themselves).  The boys helped me scrape the driveway and those of 2 of my neighbors and at my parents house.  I saw so many things that Jeff would have done, so many chances for him to have with his boys in these past few days.  And I know being trapped in my house without power would have gone nicer with Jeff around to make it fun.  Instead, my tools to entertain and play with my kids have gotten rusty.

Snow days used to be fun.  Maybe after a few changes, they can be again...

Sincerely,

Jeff's Widow

Stuck in the Moment

I am re-reading the Hunger Games because I just saw the second movie recently and as I neared the end of the first book a quote leaped out at me:

Because if he dies, I'll never go home, not really.  I'll spend the rest of my life in this arena trying to think my way out.

I understand that on a very visceral level.  Because a part of me still lives in the guest room.  The person I was never left that room.  In fact, I would go so far as to say the person I was died in that room with Jeff. 

She opened that guest room door expecting to hear Jeff's sonic snoring but instead she found his lifeless body.  She rolled him over, ran for the phone, futility attempted CPR, all the time begging Jesus to help her with every breath she wasn't forcing into his lungs.  She relives that day, over and over, wondering what she could have done differently.  What would change the outcome so that after one of the breaths she forced into him, he would cough and sputter and breathe in on his own: like they do on the movies.  She could have then cried over him and told him how much he scared her.  Only she is still in that room, still attempting CPR and never getting the result she so desperately wants.  She is stuck in that moment.

Instead, a new person walked out of that room.  This new person who had to learn how to deal with death, to deal with being a widow, deal with being an only-parent.  She's not a bad person really, just not the one I thought I would be.

I suppose it is a form of PTSD to relive this traumatic event.  For me especially when I see CPR performed on TV or in the movies.  It causes a terrible flashback for me.  I actually need to renew my CPR for work and I can't do it.  I won't do it and so far no one is making me.  I don't know if I could ever attempt to do it again.  All I know is that I did everything right regarding the CPR and it didn't work.

You never "get over" a traumatic event like loosing Jeff to SUDEP.  In a lot of ways I am stuck in the moment of that morning.  The only thing is: I choose to box it up and keep a lid on it.  In order to function in daily life, in order to be the mother I want to be for my children, I try to contain the events of February 26th.  Not close myself off from it, but contain it so that I can function.  Which means, it also pops up like a jack-in-the-box to scare the crap out of me at random times.

I guess that since a part of me is forever stuck in that room, that is why I avoid it.

Sincerely,

Jeff's Widow

The Brag Letter

It is that time of year again: Christmas.  The time of year when you get Christmas cards, picture cards, and the occasional "Brag Letter".

You know the Brag Letter: the letter that details everything wonderful the family did that year.  I am guilty of doing it too in the past.  Especially the year I got married and the year J1 was born.  Such wonderful things to write about, and there was no Facebook back in the dark ages.

But what do you do if your year wasn't wonderful?  What do you say?  Do you drop the letter (I did) or do you struggle to find a way to spell out that you had a crap-tastic year.  Thank you very much.  Enjoy your holiday season and don't worry about me and my bummer of a letter.  I don't think so.

I like the picture cards.  I like receiving them.  I love to see how the kids are growing, how the families are doing.  I like the cards with the entire family the best, not just the kids.  I remember Jeff would pick up a card and ask "who is this?"  and I'd tell him so-in-so's kid and he'd get all mad that they weren't in the picture too.  He wanted to be able to recognize the kids based on the parents that were his friends or family.  I think he also wanted to see his friends.  I have to say that I agreed with him which is why I've tried to include family pictures and not just kid pictures on my cards. 

Last year, I still sent out a picture card.  I wanted to.  I did a collage card and because I needed to include Jeff: I did.  I included what I consider his memorial picture.

Unfortunately, this was how one friend of his learned of his death.  It was hard on him, it was hard on me when he called. 

This year, I did a picture card again but with a slightly different theme.  I included Jeff's spirit if not his actual picture.  I don't know how I feel about it still.  Part of me isn't happy and part of me is.  Jeff isn't hear in person, only in spirit so maybe it was the right way to go.  But does it honor him?  I don't know, I'm waiting for feedback.

I don't know if I'll ever be able to write a brag letter again.  I'll be honest, I don't know if I can read them either.  I wonder if one day one of Jeff's friends or relative with say "who the hell is this and why are they sending me a card?" because Jeff isn't in the picture and they don't recognize us with out him.

I don't want Jeff to be forgotten and in turn, I don't want his family to be forgotten either.  But I don't want to include his "death picture" or memorial picture either.  Maybe I just worry about the wrong things. 

Sincerely,

Jeff's Widow 

Green Bean Casserole and Reddi Wip

This was my second Thanksgiving without Jeff and I did alright.  It helps that Thanksgiving wasn't one of his favorites so I have good memories without all the hype, not like Christmas.

I did have my moments, like after I fried up a batch of onions to use as the topping for the green bean casserole.  One of Jeff's favorites.  I had to make it gluten free this year and so I also really need to change the recipe.  I know Jeff would have loved the new experiment especially if it meant he could add more spices to something.  He never thought there were enough spices in anything really (hello, Old Bay Seasoning!)  One year he made the green bean casserole for Easter and dumped half a bottle of dried garlic powder into it.  Because one teaspoon did not look like enough.  It was inedible and became quite the family joke.  After that Easter, everyone would ask me if Jeff "helped" with the green bean casserole before taking a spoonful.  I felt a bit sad after making the dish.  But I powered on.

I also took a second to squirt whip cream into both boys mouths with the Reddi Wip.  Something Jeff was famous for.  A can of Reddi Wip did not live long at my house.  Both boys tilted their heads back, mouth open like little birds (they remember this from Daddy) and I gave them each a mouth full before decorating the pies.  As I squirted into both of their mouths I said "remember daddy".    Jeff didn't try to hide these things, he wore his whip cream and spice addiction with honor.  I am sure my boys will too.

The day was fine.  I know a woman at my GriefShare said that the second year was hardest.  I get what she meant but I am not sure I agree.  It was hard but not harder than last year.  I found that I didn't cry this year and in some ways that made the day harder.  See, this sounds weird but your grief becomes a shield in a way.  You openly cry: you openly talk about your loss.  Then slowly that starts to disappear and you almost find yourself grieving for your lost grief.

It isn't guilt.  I don't feel guilty for where I am.  The day after Jeff died I got out of bed, breathed, walked around out of sheer force of will.  I do that everyday.  I am proud that I did not curl up in my bed and whither away and die.  Because I will be honest, it would have been my first choice.  Except, I had boys.  I had boys that needed a mother and I was not about to abandon them.  But sometimes, sometimes it feels disloyal.  Like I should grieve more, I should cry more, I should be more depressed over Jeff's loss.

I know why I'm not.  I'm a tough Bitch and I own it.  I miss Jeff everyday but I didn't stop living.  I grieve for Jeff everyday but that grief is not as strong, not as hurtful, not as powerful as it was a year ago. 

It does make this holiday season harder because it feels like he is slipping away again.  First I loose the man then I loose the grief that has been the focus of my life for almost two years.  Oh, I still have my moments.  I just didn't on Thanksgiving.

Sincerely,

Jeff's Widow