No Comforting Lies

The day after Jeff's first seizure, J1 made a statement that is heartbreaking in retrospect.  He said "I'm afraid Daddy is going to die." And I said what any person would in that situation.  I said, "No honey, Daddy is going to be fine."

I didn't lie to J1, I honestly didn't know that a person could die from a seizure.  Which is why I am angry with Doctors and the Epilepsy Foundation.  I have heard for years that people with epilepsy can lead a normal life.  It's a big campaign, but guess what?  Not everyone can.  They don't tell you about the kids who's seizures can't be controlled by drugs, they don't live a normal life.  They don't tell you about status epilepticus that can leave your brain in a constant seizure for days, weeks, or months.  Forcing doctors to put you into a drug induced coma.  And they don't tell you about SUDEP.  That you can die in your sleep.  They lie to you and tell you that you can have a normal life.  They comfort you with their lies and it leaves you vulnerable when you fall into the small percentage that isn't normal.

Which is why I can't lie to my kids.  There are no comforting lies here, not now.  Even on a day like today when our 14 month old dog, the dog I bought to cheer my kids up after the death of their father, was bitten by a copperhead. 

He is spending the night at the emergency vet and I honestly don't know what the outcome will be.  I came home from the vet and was honest with my kids.  I said the dog was in the hospital and sometimes things go well and he will come home tomorrow and sometimes they get really sick and die.

We have already had our hearts broken a year ago.  I'm still battered and bruised by the lies I was told and I find no comfort in them now.  I will not lie to my children tonight, of all nights.  They need to know that they may loose the newest family member.  Death is a reality that I am harshly familiar with.  No lie can comfort you...

Sincerely,

Jeff's Wife

Grief Competition

There is no award for grief, it’s not a competition, really.  So you lost dog or cat.  I get that. I’ve lost them too.  You lost a grandparent.  Or you lost a parent.  

You lost a child?  I certainly can’t think about that.  Right now, it’s one of my greatest fears and you are living it.  I think it was I was talking with my MIL and it was almost like “who had it worst?” and I was thinking she did.  Because she lost a child.  It didn’t matter that he was 42 years  old.  He was still her baby.  She carried him, she nursed him, she raised him, she sacrificed for him, and you get to a point in your life and it’s all supposed to be good.  You are done worrying about them, they aren’t teenagers anymore, they aren’t in college.  They are married, in a house with kids and they are supposed to be fine.  And there she turns around and thinks I’ve got it worse because I lost my husband. My partner and the father of my children.  I learned right then: we lost the same person but our grief will never be the same.

But you know what?  I’ll tell you something.  I don’t compare my grief to yours.    You are grieving for what you have lost and it doesn’t matter if it is a dog or a cat, a parent or a grandparent, or a child or a husband.  It’s grief and it’s different for everyone. And I get that.  So don’t think you can’t tell me what you are going through.  Because I’m not going to compare to you since there is no way to compare feelings.  It’s indescribable. Don't be ashamed to tell me you are sad you lost your cat.  I’m sad for you too, I’ve lost a cat before and I know that it is painful. 

I write because I was told to.  I made it a blog because I thought it might help my friends and family to understand me in ways I am not willing to say out loud. Just so we are clear: I don't think my life is harder than anyone else.  I know we all have our struggles in life.  I don't compare my grief to the myriad of things you are battling.  I can look at my friends and list something that sucks in each of their lives, something they are having a hard time dealing with.  I don't compare.  I don't say it out loud, I don't even think it.  I accept it.

We all have our struggles, I just happen to be writing about mine.

 Sincerely,

Jeff's Wife

The Beach

I took the boys to the beach this weekend.  Three days of places, events, actions that all evoke memories of Jeff.  It is in moments like these when I have a time-line altering schism.  A moment where I could just swear that this life is not real and that somehow I need to get back to the real one.  Like the Star Trek episode where Worf keeps jumping realities and in one he finds out his son was never born.  In the end, it is all fixed and he ends up back in the correct timeline.  I feel like that.  I have moments where time just stops, I get dizzy and I swear that this cannot be real.  That this timeline I am in is wrong and that Jeff has to be alive that Jeff has to be with his boys that Jeff should be going to the beach with us this weekend.

But this isn't science fiction and as much as I would love to figure out how to switch planes of reality.  I never will.  I have to course correct my mind and focus on the life I am living now and not the one I think I should have.  It is always harsh to do, mentally.  It is even worse when I am around other people.  I have to do it all internally and try not to make a scene.

Which is why I've been crying on and off for the past day.  I'm alone again and I can let the tears flow.  I know, I know... you all think I can cry when I feel like it.  But I can't.  First off, I did not grow up in a household where that was accepted.  I learned early on to not cry, to keep myself together, to not be loud, or laugh boisterously.  Over the years I have given myself a pass on the laughing but crying is still just not done.  Some habits are hard to break.  I often hide to cry.  Or I have learned to cry softly and with infrequent eye-rubs to keep the possibility of notice low.  Second, I learned a while ago that the more I cried the more I upset my children.  There is a certain level that they can handle and after 6 months or so, they were done.  My children still mourn the loss of their dad but they are more likely to feel the joy in a situation than to cry over their loss.  I'm still the opposite.  I will cry over Jeff's absence before I am happy with a new experience or milestone the kids have reached.   So I have worked on perfecting the art of crying so they don't notice.  Sometimes I don't succeed.  But mostly I do.

A weekend trip was a common occurrence in our household.  We never seemed to take week-long jaunts anywhere but we could pack in a half-dozen 3-day trips a year.  One of our favorite places to go was to the beach's in Delaware.  We had a regular restaurant to stop at, a beach location to go, and GoKarts to ride.  All of which I did this weekend and I did it without Jeff.  I had stomach cramps for an hour after eating and I cried after I found out my oldest was tall enough to drive his own GoKart, a milestone Jeff had been anxiously awaiting.  I don't know when this fake-timeline feeling will go away.  I just know it hasn't yet. 

Sincerely,

Jeff's Wife

p.s.  I still have those buckets in the picture above. I didn't even realize that until the photo downloaded. My boys used those two buckets this weekend and it fills my eyes with tears.

Movement

Any parent can tell you: we know a lot about poop.  It starts off right at the race chute.  You have a brand new baby and one of the first concerns is: has he pooped?  The yucky black tar that babies do.  Even the books on babies have whole chapters devoted to poop.  How much, what it looks like, etc.  Right up until your sweet baby starts passing what looks and smells like regular adult poop.

It only gets worse if you have a child with constipation issues.  You are obsessed with poop.  Did he poop today?  How much?  What was the consistency?  Do you need to up his meds?  Lower his meds?  And then add potty training.  It's a nightmare.

I remember when Jeff looked over at me and said "I never knew there was so much poop to talk about."  He wasn't kidding.   We had hours of conversations about poop. 

Hindsight is 20/20 as they say, and I know know that J1 has Celiac's disease and the years of constipation and issues with potty training can be attributed to that.  I wish Jeff could have known that it wasn't us, that we didn't fail in the 2 1/2 years it took to poop-train J1.  There was a reason.  There was a reason I talked poop for years.

Now I have a new obsession.  Fiber.  The introduction of a gluten free diet has had one remarkable effect.  It has made J1's constipation worse.  Thank-you, I needed a break!  There is no fiber in gluten free foods, generally.  So, we went from constipated to impacted in a month.  So, last week - I had my Halt and this week I went back to the nutritionist to arm myself with an arsenal that will effect movement.

Fiber.  Did you know that a child should get 15 to 20 grams of fiber a day?  Did you know that a "high fiber diet" doesn't mean the 20 but actually 30 grams of fiber?  Do you have any concept on how to get a picky eater to ingest 30 grams of fiber?  If so, you are hired!  Come see me :-)

So, I am embarking on the sneaky chef method of getting fiber into his diet, and J2 because what is good for 1 is good for 2. 

Black bean brownies, Magic movement smoothies (my own not-so-secret recipe), peas, corn, blackberries, flaxseed flour, prunes and prune juice.  It will be added to everything.  See I never know what J1 will eat.  He is a picky eater.  He can eat an entire pizza one day and nothing for four days after.  He will gorge on pints and pints of blueberries and then not eat them for months.  The same with strawberries.  So, I need to over-plan the fiber so that hopefully I can get some in him.  We shall see.

I know Jeff would be shaking his head.  He would be calculating how much longer I am going to continue to talk about poop and then he'd start thinking about a long motorcycle ride.  He'd be suspicious of foods at first and then completely forget that I've added prunes to everything never realizing that he was regular as clockwork for a reason. 

I miss having that interaction.  I miss having someone who could make me laugh while I'm facing  the daunting task of another major diet change.  I miss the fun of surprising him with the fact that he just ate beans or prunes or (lord help him, peas).  I miss my friend.  I hate going through this alone.

Sincerely,

Jeff's Wife

Father's Day

Last year, Father's Day was like jumping from an airplane without a parachute.  The pain was too new, too raw, too overwhelming.  J1 had just started his angry phase and I was a zombie.  I didn't want to deal so I decided that Father's Day didn't exist.  I told my FIL and my father that we weren't going to do a Father's Day celebration.  I made plans to be out of town that weekend.

Then the boys came down with the hand/foot/mouth plague.  We stayed home.  The day came and went.  We didn't go to church, we didn't see anyone, we didn't listen to the radio or have the TV on so the boys didn't know what the day was.

But I knew. I suffered.

This year, I decided that we can't avoid the things that hurt us.  That's easy enough to say when you are (ahem) 40 but it's another thing when you are 7.  I know this.  But I also know that I can't always protect my children from the things that hurt them.  I can help them deal with that pain.  Learn how to cope and to move forward. 

So that was Father's Day this year.  I started by telling J1 that the day was coming up and that we would be having dinner with his grandfather.  A few days later, he asked me to point the day out on the calendar.  I've checked in a few times over the week to see how he is processing.  So far, so good.  I'm processing OK.  There aren't as many commercials about Father's Day as there are about Mother's Day but it is still in the media, still on facebook and pinterest.

Father's Day will never be a good day for us because Jeff is not here.  However it doesn't have to be a day to dread or to avoid.  Someday, I'll figure out what to do on this day to memorialize Jeff.  Right now, I'm just trying to survive it.

Sincerely,

Jeff's Wife

Halt

Yesterday called for a halt to my hamster-wheel of life.  The boys and I stayed in our PJ's all day and I never got into my car.  Let me say that again, I never got into my car.  I haven't had a day like that in 13 months and that's when I had the flu.

Thankfully, no one was really sick.  Just uncomfortable.  We stayed home to clear up an issue with J1 as a result of the sudden gluten free no-fiber diet.  So we needed to be home and close to a bathroom.

We had a lovely day.  Things weren't bad for J1 so we played outside, we played on the Wii, we watched TV, the boys created a picnic surrounded by all their stuffed animals.  I baked bread, cookies, and brownies.  The laundry was done, the house was picked up and clean.  By 2 or 3 pm I started circling around the house thinking I was missing something vital that needed to get done.  There is always something that needs doing.

Hmm... so I picked up a book.  Shocker.

What I was struck with was the peace of the day.  I had to toss the boys in time-out once and it was not for fighting but for playing well together.  Unfortunately, they were playing on the stairs and I had already told them to stop.  It was a rare day.  A day where we didn't go somewhere.  A day all of us were healthy.  A day we all got along.

I miss days like that.  There used to be so many of them.  Days we stayed home and played.  Not the crazy over scheduled running from one activity to doctor to speech to therapy to OT to games to party to whatever.  It's a hamster wheel of life we run and we don't get anywhere but it is where we are right now.  I try to embrace it.  I know it won't last forever.  But it's hard and we are all tired and we all could use a break. 

So, sometimes life calls a halt to the hamster wheel.  It is always inconvenient.  I had to cancel a day of events I had to miss a day of work, J1 missed something fun at school.  But all it all.  It had the makings of a "staycation" and I can really get behind that. 

Sincerely,

Jeff's Wife

How Would I Know?

I've talked about fear before.  But fear is so insidious, it lies dormant waiting for  you to be weak and then it strikes.  I have recently had another go-round with this foe and it sits coiled in my belly.

A week ago, J1 woke up with a wet bed.  Now, he's 7 and it sometimes happens when I don't remind him to pee before he goes to sleep.  I was fine that morning as I sent him off to school and changed his sheets.  Then, later in the day as I was describing SUDEP to someone, a switch clicked on in my brain and I was suddenly filled with fear. 

See, I said that Jeff had the seizures in his sleep and that he would never know he'd had them if I hadn't been there, except that he wet the bed.  So, what is the next conclusion to jump to? 

How do I know J1 isn't having seizures in his sleep?  How do I know that is why he wet the bed?  He is well past the age for a baby monitor. And even if I put a noise monitor in his room, would I catch the sounds of a seizure?

It is a slippery slope to go from considering a potential disorder to finding disorders around every corner.  I don't want to be that person.  But I also don't ever want to find a loved-one dead in their bed, especially not my children.

I have been consumed with this fear for four days now with no real answer to my question.  I plan on asking my pediatrician when J1 goes in in two weeks.  But I wonder if my fear is groundless or would I have peace of mind if I bought a seizure detection monitor for my two children who have never had a known seizure?  Am I buying into the fear?  Or is it preventative medicine? 

I can't decide and so I am torn, stress-bellied and nervious.  Hand hovering over the big red panic button.

Sincerely,

Jeff's Wife