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