I Am So...

I Am So Fucking Broken...

Is what I said as I lay on the floor of my home office.  Not because I had broken my left elbow, not because I had thrown my back out (again), not because I had managed to gain back all 80 lbs I lost last year.

No, that is all physical.  I'm looking at the metaphysical, I am broken. 

In that moment, I wanted nothing more than to just cry.  Give in, sob.  Go a bit hysterical, maybe have a breakdown - that sounds good.  I don't know what you call it.  But I was on the cusp.  I wanted to go there.  But I didn't.  I rolled over stood up and made plans for my day.

Doesn't mean I'm not broken.  Just means I have an overdeveloped sense of responsibility.

It is awfully simple to say that Jeff's death messed with my mind.  But it has.  I still have a hard time understanding how a healthy 42 year old man dies in his sleep.  I still have a hard time forgiving myself for my role in his death. And now I am reliving every torturous moment with my son J2.

Everything I do now, I think of how I should have/could have done for Jeff.  Insist on seizure meds?  Done for J2, didn't for Jeff.  Second opinion from epilepsy expert, in progress for J2, didn't do for Jeff.  Monitor J2 in his sleep, didn't do that for Jeff.  Cardiology work up?  Done for J2 didn't get a chance to do it for Jeff.  I could go on.

I am reliving my mistakes in the most painful way possible, terrified that I might get it wrong the second time around.  Terrified that SUDEP could strike twice in my household.

How do you sleep?  How do you live?  How do you acclimate to this?  How?

Damned if I know.

Jeff's Wife/J2's Mother

Radio Silence

I haven't written since February.  Not that I haven't had a million things to write about and I have, in a way written so many blogs in my head this year.  Unfortunately, I have spent most of this year feeling sorry for myself and not mustering the energy to transfer my thoughts from my head to the computer.

I liked to say I was "mildly depressed" but it turns out to have a name "Dysthymia" which pretty much means you are south of normal but not at the rock bottom of depressed.  Life is complicated, and in January I would have told you the second worst thing had happened to me.  But now that has been downgraded to third.

On Sunday night, my youngest son J2 had a seizure just as I was getting him ready for bed.  In some ways it was similar to Jeff's seizure and in others completely different.  But even more terrifying after Jeff's death.  I called 911 and we stayed in the hospital for almost 24 hours.   Each doctor I spoke too I told them that J2's father died from a seizure.  I needed my point to get across that I was not going to be cautious.  I was going to expect a full work up and do the absolute max that we could medically.

In the ER I told my MIL two things. 

1) this is a total game-changer and
2) that I might have gotten it wrong with Jeff but I wasn't going to with J2.

I insisted on seizure medication and full tests done.  When the neurologist was telling me that I didn't need to call 911 for future seizures I interrupted her and said "as long as you understand I am not going to be cautious you and I are going to get along great."  I will call 911, I will take him to the ER for seizures (mainly because he was vomiting so much and needed medication to stop).

My family ordered EMFIT seizure monitors and video baby monitors while we were still in the hospital.  J2 will sleep with me until they arrive.  In fact, I even moved my older son J1 into my room as well.  I have monitors for J1 on order as well.  I need to know he is OK.

I will not leave J2 while he is sleeping.  Since I left Jeff only to take a shower, I cannot convince myself to do the same with J2.  I will wait with him, or have an adult wait with him, until he awakes.  He will never be left alone especially while sleeping.

Fear, it is full-on, unadulterated fear.  But I have knowledge, I have experience behind me.  This fear is based in reality and I must heed it.  At some point the monitors will be in place, his medication will be at therapeutic levels and I might calm down.  Or I might not.  Time will tell.

Seizures/Epilepsy has struck a second time in my family: Damn It.  But I will not loose this time.  I bought a shirt recently that says "Epilepsy F'd with the wrong person." It means more to me know.

Jeff's Wife/ J2's Mother

There Are No Words

I know you mean well.  You know I hurt and you want to say the right thing.  You want to be kind and compassionate and caring.  You want to say something that will make me feel better.

I love you for that.  Really.  But honestly, there are no words to accomplish that goal.  So I give you a pass. You don't even have to try.  I know and you know and that is all there is too it.  There isn't much to say other than "this sucks" or "this is a shitty time" or that you are "thinking of me" or "praying for me" that's enough.  Don't hurt yourself trying to find the right thing to say.  I don't expect it from you.

On the flip side of that.  Don't be surprised if I'm honest.  Truly honest with where I am.  I am in a dark place a really bad place mentally.  Just as one can be "little bits pregnant" I am "little bit depressed".  And I'm OK with owning up to that.  So if you ask me how I am, I will tell you "not good".  If you follow up -- the answer has mostly been "It's February".

February and I are just going to have to agree to disagree.  I have not had a good month.  I have spent this time second guessing every decision I made 2 years ago something that makes me sad as well as wracked with guilt.  It isn't a good combination.

I am depressed.  But if you subscribe to the 5 Stages of Grief... it's one of them.  I don't think that depression is inherently bad.  I think you can be a functional drepressive just as one can be a functional alcoholic.  The trick is taking stock of yourself every once in a while and determining if you are, in fact, still functional.  This is where good friends and family are key.

It isn't a mystery as to where I am and why I am here.  It is both simple and extrodinarily painful.

I loved him.  And he died.

Sincerely,

Jeff's Widow

Mistakes

January 30th is a hard day for me.  It is a day that stands out in my mind because it was the date of Jeff's first seizure.  Aside from the fact that the seizure itself was frightening, there are two things that are hard to accept from this day.

One, that a healthy 42 year old man could suddenly have a seizure and two, the mistakes I made afterwards.

I don't throw around the term "healthy" lightly.  Jeff was proud of the fact that he had never had a broken bone, stitches, a visit to the ER, surgery, or a serious medical condition.  In 2008 he was diagnosed with asthma and was on medication for it.  He had one ER visit due to the asthma a year before he died when we couldn't get an asthma attack under control and he needed a nebulizer treatment.  In 2012 his asthma was so well under control that he had been able to cut his medication in half.  He was thrilled, because he didn't like being dependent on so many drugs.  While Jeff was overweight he was active and nothing held him back. 

So to say that the seizure was a shock is to put it mildly.  I have read that 1 in 26 people will have a seizure in their lifetime.  It seems that medical science doesn't quite understand all the reasons this can occur.  I have a hard time accepting that, both in 2012 and now.  I still don't understand what caused Jeff to have a seizure.  I could understand it if he'd had a head injury or a brain tumor, but for his brain to suddenly go haywire and misfire electrically I just can't wrap my brain around that.  I want there to be a reason. 

But what is the hardest is trying to live with all the mistakes.  Knowing what I know now and knowing what I could have done differently prior to February 26th haunts me and it gets worse this time of year.  

Jeff went to the ER in an ambulance that day.  They ran blood work and conducted a CAT scan.  He was discharged with comments that all was normal and to follow up with a neurologist and his primary care doctor. 

I took Jeff to both.  He also had an MRI and an EEG.  I took Jeff to his pulmonologist to make sure that his asthma medication wasn't a cause.  I asked for a sleep study and I had him scheduled to see a cardiologist.  I was looking for a cause, I was looking for a reason.  But I wasn't fast enough.

We waited 3 weeks for an appointment with Jeff's pulmonologist.  Why did I let his happen?  Where was the bitch who won't take "no" for an answer?  Why didn't I insist that they see him that week?  Why did I not insist this was an emergency and that I'd just show up in their office if I didn't get an earlier appointment?

Why when the cardiologist said 6 weeks for an appointment I didn't do the same?  I can be the pushiest broad you ever met... why wasn't I?  Why didn't I treat this with more urgency?

I won't get into the mistakes with the neurologist, but I have since learned that there are "specialty interests" for neurologists.  If I had known this, I would have found one that "specialized" in epilepsy or seizures. 

Of all the mistakes I made, I have such a hard time forgiving myself for not acting like myself.  I can be mean, I can be polite, I can be scary as hell and all because I expect to get what I want and Lord help you if you stand in my way.  This is actually normal for me... why wasn't it then?

I made a mistake when it came to Jeff's medical care: I didn't treat it with enough urgency.  I thought I had time to find answers and I was wrong, I was arrogant.

I can never fix that mistake and I just can't forgive myself either.

Sincerely,

Jeff's Widow

J's Mother

I was in my pediatrician's office a few weeks ago for J2's five year well check and after telling him the following story he asked "is there anything you don't do?"  The simple answer is: No.  I will do and continue to do anything and everything I possibly can to help my child.  It was what I was biologically made for and it is who I am in my soul.  I didn't just impart 50% of my genetic material to an offspring.  I am raising my boy.  And sometimes that takes me out of my comfort level.

My youngest has sensory processing disorder, ADHD, and a speech delay.  He is also "off-the-charts" big in height and weight.  Which means he is a good inch or so taller than kids a year older than himself.

My oldest is also tall and I have had a few times when people expected him to behave better (when he was 3 and someone thought he was 5).  Compound that with a child who is delayed both in speech and in his social interactions.  He may look to be about 6 or so, but he acts and talks like a 4 year old.

He is very bright, his delays in speech are improving dramatically and with his twice-weekly occupational therapy sessions he is learning to adjust and control himself.  He is still slightly behind socially but I have full confidence that he will catch up.

He attends a special needs preschool where he fits in beautifully but as I have mentioned before: things have not always gone well in the sports world.

http://survivingaftersudep.blogspot.com/2013/09/the-persepective-of-baseball.html

J2 is a bit clumsy, a bit impulsive, a bit loud, and a bit clingy to his mother.  There are children who accept him as he is and play with him and there are children that shun him.

It is hard on a mother to see the latter happen.   We may have given up on baseball but my son plays hockey.  He is a very good skater and while he holds his stick incorrectly and ignores the puck in a hockey game: he is young and he will learn about the game soon enough. 

What wasn't working out was the social aspect of the team.  The team he is on are all young players 5 and 6 years old and in a short amount of time a group of older boys decided to target him.  They teased him, taunted him and started to pick on him (knocking his stick away, taking the puck away during free skate).  I could see this happen while I sat on the bleachers.  I could see my child skating then have another boy talk to him.  I could see my child's face contort in anger or sadness and I could see when he fell to the ice to cry and there wasn't anything I could do about it.

Until, I saw a boy hook his stick around my son's throat and drag him 5 feet.  Then I went to the father, who happened to be a coach.  It was nerve wracking but the father gave the event attention and respect and I felt better.  I still didn't know what to do about what was going on but I was working with my child on not reacting to the taunts.  Until my friend ASW suggested we become coaches too.

My hesitation was that:

1) I have never played hockey
2) I have never had skating lessons and
3) WTF?

I thought about it and within a week I agreed.  I may not be a great skater but I can stay upright and I can learn hockey. So I took the coach's class, did the online modules and took my butt out on the ice.   I'm not really a "coach" more like crowd control on the ice.  The first day, after 20 minutes I thought my feet would fall off.  Within 40 minutes they were frozen solid but at least they didn't hurt anymore so I was good.  I am how a Level 1 Certified USA Hockey coach and skate every weekend with the team and with my son.  He is doing great and there is no more teasing.  No more taunting.  In the locker room some of the kids, even one's that had been mean to him, have come over to talk with him and look at what he is doing.

There isn't anything I won't do for this boy.  I am J's mother.

Sincerely,

Jeff's Widow

The Tracks of My Tears

If you saw me yesterday would you have said you saw me at my worst? 

I wouldn't: only because I know I can sink lower.

My life is not only complicated by the loss of Jeff but also with the special needs of my youngest son.  I was not at my finest in dealing with his meltdown yesterday.

Less than a month before Jeff died he was out in public with J2 and our son had a meltdown.  At that time, we knew something was going on with J2 but we didn't know what it was.  When he had meltdowns we usually would just wait it out or leave.  In this case, Jeff waited it out.  Our son was in a safe place and there wasn't much to do until he stopped.  Unfortunately, he drew the attention of security.  It upset Jeff and it upset me.  On the one hand I am happy that security came to investigate a screaming hysterical child because who knows what is going on? Was this man trying to kidnap him?  But on the other hand it compounds an already stressful situation.

A year later, it happened to me.  I was in public and J2 had a meltdown and he hit me.  Across the face.  It was not the first time he hit me and it wasn't the last time either.  I didn't yell at him, instead I chose to sit down where I was and restrain him to protect himself and myself from injury.  This also drew attention from security.  This time they challenged me on what I was doing.  I had J2 in a "body lock" sitting down with his arms crossed in a hug and my legs wrapped around him.  It was the best way to protect him from banging his head onto the floor.  I had used this position on him before but never in public.  The security guard said he looked frightened and I'm sure my child did.  But not that he was frightened of me.

It was later, with his diagnosis of sensory processing disorder did I fully realize the sights, sounds, smells, touch, and the sheer influx of people just set him off his rocker.  He also responds very well to compression so my "body lock" really was the most comforting thing I could do for him.

Yesterday J2 had a meltdown in the parking lot of his preschool.  Life has been very inconsistent for him this week and he doesn't respond well to that.  It had already been a challenging week.  With going to school, having days off due to weather, and my going back to work after the Christmas break, J2 decided he didn't want to go to school.  When the car door opened he took off running through the parking lot and up the entrance road.  He was not wearing his jacket and he was not responding to my commands to stop.  This was very dangerous given the 50 other people driving into this lot to drop their kids off.  When I caught up to him I had to physically move him out of the road.  This is not easy, my child is 60 pounds and nearly 4 feet tall.  He is very strong and very dense.  He was also intent on "walking home" so when I picked him up he started kicking/hitting/screaming. 

And he hit me.  I challenge anyone to hang onto a 60 pound child who is kicking and screaming.  Let alone one that just clocked you.  Hard.  So I dropped him.  We were off the road and in the grass.  In no way did I hurt him.  Like I said he's almost 4 feet tall so dropping him from the height in which I held him in no way could have hurt him.

At that point I got yelled at by a mother in a truck pulling into the parking lot.  I didn't pay her much attention because I was focused on my child.  I needed to get his jacket on (it was freezing) I needed to get his shoes on (he had kicked them off into the road so I had to dart in front of cars to get them). and I needed to keep him in the grass and not back on the road where he wanted to be.  I was very calm and very gentle with him.  I was getting no where in my attempt to get him closer  to his school and we were still dangerously close to the road.  As I was moving him closer to the school some of the staff came out to help me, which was greatly appreciated.  I went inside to drop off his bag and tell his teacher of the delay. 

As I did, I heard the mother from the truck talk about the incident and what she was saying was incorrect.  As I passed by her again, I couldn't help myself, I got into her face and yelled at her.  I was still upset from what happened with my child and to hear her portray me as "throwing" my child to the ground upset me.  (Again, he is 60 pounds I couldn't throw him if I wanted to). Whatever she saw in her 10 seconds was not what I had just lived through.  How dare she tell this story?  How dare she make me sound like an evil parent?  Does she have a special needs child?  Has she been hit/battered by her child?  Has she had her nose broken, lip split, cornea scratched by her child?

My children have been in this school for 6 years.  I know a good third of the people in that hallway and I am ashamed that I screamed at this mother.  But I was hurt, I was angry and I didn't not appreciate being judged on the 10 seconds she saw while she drove by.

Was I at my worst?  I was for that day.

I am not happy I dropped my child.  I am not happy I spanked him.  I am ashamed I screamed at some unknown mother in the hallway of my preschool and now I have to face all these people for the rest of the year.

When am I at my best?  I don't even need to tell you what I do for this child... that doesn't matter.  What does matter is how much I love him.  My baby.  My last boy.  The one that looks so much like his father, that we lost, that it squeezes my heart dry sometimes.  I am at my best when I hold him.  When I comfort him after he has gone out of control.  When he knows he has freaked out and it scares him too.

Can I sink lower?  Yes.  Can I get better?  Yes.  But I am still his mother and I love him more than my own life.

Sincerely,

Jeff's Widow

"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