The Walk

On Sunday I organized a 5K in honor of Jeff.  I did this through the Chelsea Hutchinson Foundation on their annual "Chelsea's Walk" day with the proceeds going to the foundation to provide monitors and seizure response dogs to those in need. 

http://www.chelseahutchisonfoundation.org/

I've been working on it all year.  I should just say that I had no idea what I was doing or what I got myself into.  It has been a year of trials and triumphs.

First I had to get a permit from the county to hold the event.  But my county won't even look at your permit until 4 weeks prior.  What???  How can you advertise and plan a FUNDRAISING event in 4 weeks?  Then the county sat on my permit for another 2 weeks before approving it.  In the end, I had 3 weeks to advertise and get sponsors/donations. To say I was scrambling is to put it mildly.

Then four days before the event, I discover I needed 350 3-foot orange traffic cones to line the course because we were on public roads.  I had arranged for police officers at intersections but the cones were a new twist.  My permit only said "permitee responsible for providing 3-foot traffic cones".  It didn't specify how many.  Stupidly, I asked when I was confirming my officers for the event.  That is when I discovered you need a cone every 50 feet.  Holy Moly!  I scrambled and asked and begged.  By Thursday afternoon I was able to borrow half the cones needed from local firefighters and rented the other half.  Then, I needed a road crew the day of the event to set up and break down the cones.  These four family members didn't get to walk/run in the event instead they hung out in a pick-up truck for 5 hours hauling orange cones.  Without them, the walk would never have happened.

I had 88 people pre-registered and had another 35 walk-up to register the day of add in the 10 to 15 volunteers and I had a good crowd.  I am proud of what I did, even if the Type- A personality in me is disappointed in the "no-frills" event it ended up being.

We started 15 minutes late so that the road crew could finish up laying out the cones, but no one got lost (I did a 5K where that happened once because the course wasn't well marked).

I had a ton of food donated by Panera Bread and raffle items generously donated by friends.

Humor was brought to this somber occasion when a friend's 2 year old asked to speak as I got on the microphone to make my pre-race speech.  What did I do?  I let him talk!  He gave us a run-down on the police officers out front and a few other things I don't remember.  It was cute, it was funny, it was just what I needed.

Just prior to the start of the race we released white doves in honor of those lost: Chelsea, Jeff, Joshua, and Eric.  I did my best not to cry.

There is a strange sort of let-down after an event like this is over.  I cried off and on the rest of Sunday.  I've cried over pictures and compliments from friends.  I cried because I did an event like this and the reason why.  I cried because of those we have lost to SUDEP. 

I cry, but I've already made notes for improvements on next year.  And yes, there will be a next year.

Sincerely,

Jeff's Wife

The Persepective of Baseball

If you don't have a child with sensory processing disorder or another special need this may be hard to grasp, but I'm going to try to explain it.

You adapt to the situation you are given and sometimes the changes are minor until suddenly you realize all the minors have added up into a major change.  This first hit me after Jeff died and I realized how much we had adapted to J2.  Situations could be so stressful for him and us because he did not handle change well that we often employed the "divide and conquer" method of parenting.  Where I would take J1 to his event and leave J2 at home with Jeff.  This had to end of course, after Jeff's death because now I needed to take J2 along with me to all of J1's events.  It was a big change for all of us, but I have found ways to deal with it all and live with it (and I challenge anyone to question my employment of a portable DVD player, Ipad or Nitendo DS).

Even with the OT, speech therapy, diet changes, doctor appointments, and special needs preschool I seem to harbor the mindset that J2 can do it all, just as J1 has.  It is interesting how our perspective can change. 

And it is all due to baseball.  I signed J2 up for tee ball in the spring.  He didn't do great (he was in the dirt about 70% of the time) and I'll be honest, I had a disagreement with an assistant coach at one point that left a sour taste in my mouth.  But towards the end of the season I thought he was doing better and he said he wanted to do it again.  So, I signed him up again this fall.  I should have known better.  The assistant coach is now the coach.  But I will say this: the coach has been great.  He has done the best he can with J2 and I am very happy with his coaching and his interaction with him.  It's J2 that hasn't been at his best this season.  And as I'm watching him spin in circles or try to head-butt the coach into the stomach I realized "maybe baseball just isn't his sport."

I also feel bad for my little guy.  The other night he was on first base, but a child of a much greater ability was in a position near him (in tee ball they are all bunched up on the diamond and not really in the outfield so this kid was in a spot half way between 1st and 2nd base).  That child could run to 1st and grab the ball all before J2 could.  And he did it EVERY STINKING TIME during the inning.  It got so that J2 cried.  And I was dying on the bench.  I knew what was happening.  He wanted the ball, it was his position, but he couldn't compete against the skills of this other kid who was "jumping" into his position. So what happens next is no surprise.  He had a fit, he also then started acting out more with the coaches (hence the head-butts).  I don't know how to explain this to the coach without sounding like a Bitch so I have kept my mouth shut, but it's hard.  It's hard to watch him struggle, to not have fun, to then be a pain in the butt for the coaches.  Baseball is just too stressful for me and I've been wracking my brain for another sport to try.  One that has more action and less downtime.  Something where he is not going to be in the position of unfairness that I have seen in two of his games already.  I'm thinking Tae Kwon Do... who knows. 

I just know that in the spring I am going to do everything in my power to convince him that it's OK if we don't do baseball.

Sincerely,

Jeff's Wife
J1 and J2's Momma

Hats Off

Three months after Jeff died, I bought a dog.  I knew it was a mistake at the time, but what can I say?  It was right there in the "so you lost a parent handbook" as step 3.  I joke, but most people I have met, if they didn't have a dog... they got one within the first year.

I knew it was going to be more work for me and I knew my heart wasn't in it.  So why did I get him?  Because it was part of the plan.  The pre-SUDEP plan. 

J1 had been asking for a dog for years.  Jeff and I had planned on getting the dog in 2012.  I had set two rules: J2 had to be out of diapers and we needed a fence for the back yard.  I had just started getting quotes for having the fence built in the weeks leading up to Jeff's death.  (Even though we all know I could get as many quotes as I wanted but Jeff would have ended up building the fence himself and taking 2 years to get it done).

Instead, I opted to have the fence built and then went out and got a dog from a rescue.  He's a good dog.  He plays with the boys and makes the boys laugh which was his entire purpose.  But I have found that a broken heart doesn't bond well.  I am used to lavishing my pets with affection and attention but I haven't done that with this dog.  I've done my job to feed and water and let him out.  So I almost feel bad for him.

And then he goes and chews things.  I know he's still a puppy and I can handle the toys, the couch cushion, the chair leg, a shoe, a bra... but when he chewed Jeff's hat.  Well, I would have tossed him on the street if it wasn't for the boys.  I got the damn dog for the kids I can't get rid of him now.

I can't get mad, he's a dog.  I couldn't even cry over the hat.  All the things the dog has chewed have been down on the floor.  The hat was up on a shelf but it must have gotten knocked off and then masticated.  But it hurt to loose the hat and it is hard not to hold a grudge.

I talk about how my kids are going to grow up differently from having only one parent.  I didn't realize that the same can be said for the dog.  He's getting a lot of attention from the kids but affection is rather negligible from me.

I'd love to say I'd like him better if he hadn't eaten the hat, but the truth was... he was facing a lonely road from the start.

Sincerely,

Jeff's Wife

Moe

This weekend I stepped out of the shower to hear the wail of utter despair.  I knew that cry, it wasn't hurt, it was heartbreak.  Sure enough, I discover that my oldest had been smacking his brother with Moe and brother got a hold of a foot and the resulting rip nearly amputated the leg.

Moe is a stuffed horse that J1 got at 15 months.  He picked it out himself at FAO Schwarz on a trip to New York City and it quickly became his "attachment item".  Moe has gone everywhere.  Moe has been to Texas, California, Florida, Delaware, and Pennsylvania.  Moe is worldly.  Moe also goes to the grocery store, the doctor, the dentist and just about any other place you drag a child.  Truth be told, Moe even went to preschool for a few months.  The teachers would snag him after a while (once J1 was engaged in play) and stuff him into J1's backpack.  It made the transition easier.

Now you might say that J1 is seven and doesn't need Moe and my only response is: he lost his father.

Moe is about as important to J1 as I am, sometimes even more when life is unfair (or Mommy is).  Moe still travels with J1 even though I beg him to leave him at home or in the car or in his bed.  For the most part, I have been able to keep Moe at home but that doesn't save him from the perils that lie within.  The dog has chewed him a bit and J1 likes to swing Moe around (or smack his brother) so small rips have happened before.

Moe's leg was reattached but this crisis reminded me that while I held my son as his body was wracked with sobs that he wasn't crying over Moe.  He was crying for his father.  And that is one heartbreak I can't repair with needle and thread.

Sincerely,

Jeff's Wife

ps.  This is one of my favorite pictures of Jeff with J1.  Even though there is no picturesque background of the ocean or a meadow... it is exactly what I saw for years.  Jeff holding J1's had and J1 holding onto Moe.

Counter Balance

As in life, Jeff's death effects many people.  Even people who never knew him.

See, Jeff was many things but he was also my counter balance.  When I'd go crazy-type-A-tiger- mom-bitch-from-hell Jeff had a way of calming me down, looking at things from his side and generally kept me from leaping before I thought things through.

Jeff was the most tolerant person I have ever met.  Go figure I married him.

So I had a upset with my son's school and as waited 3 hours for a call back from the school principal I literally had this thought: I feel sorry for them.  When Jeff died, they lost the reasonable parent.

Now, I can be reasonable.  (Ok, who just spit their drink all over their computer monitor?)  However, I am not reasonable when it comes to my children and certainly not when it comes to their education.  And I honestly don't give a flying you-know-what if that gives me some type of parenting "label".  I am going to do what I think will help my child even if I look bad in the process.

Thankfully, it worked out with no bloodshed.  I got a call back and instantly was granted what I wanted.  I am very happy with this, I really didn't want to pitch a fit, complain, and do all the nasty stuff just to get my way in the end. 

But it also left me with the reminder that I am on my own.  I am the one to fight the battles.  I am the one to take charge and make decisions for my children without that secondary parental input.  I have no counter balance.  I can go nuts and skew things any which way I choose and that is frightening. 

I remember the day Jeff went back to work after J1 was born and I was feeling: "What?  You are leaving me alone?  I don't know what I am doing!  This is a human being, I cannot be left here alone with him."  And yet, he has done it again.  Jeff has left, I am alone and I don't know what I am doing. 

Nothing makes you feel more insecure than to become a parent.  I constantly feel like a failure and not only when I screw up horrifically by forgetting to be the tooth fairy.  I feel like I have failed my children when I feed them a hotdog for dinner three nights in a row.  Or, I don't take them outside to play because I need to start laundry/cook dinner/clean up a mess.  How about when I have finally had enough of the fighting and crying and I scream at them?  And don't even get me started on missing school events because I am working.  Yeah, I feel great then.

Grief isn't a process or a journey like the books and DVDs like to tell you.  Grief is an invasive weed that sprouts up in your beautiful garden and cannot be destroyed.  Even if you pull one, others lay dormant under the soil to pop up again in random places.  My grief for the past 18 months has left me with a number of problems I need to correct now.  But even as I work to fix one I am still finding more areas where I come up lacking.  Not the least of which, is my balance.

Sincerely,

Jeff's Wife

Auto Pilot

I was completely on auto-pilot the other night when I set the table for 4.  Placemats, plates, silverware: the works.  It took my brain a half dozen times looking at the table before it registered that something was off.  It took me a minute longer to figure it out.  The sadness as I picked up one set and put it away is indescribable.

It isn't so surprising.  Jeff has been on my mind so much lately.  From the 5K I am planning to the start of the school year milestones - he is on my mind.

J1 often asks for a story about Daddy and himself at night.  The other night, after the first day of school I told him the story of his first day at Kindergarten.  How after we all said goodbye to him and he got on the bus, Daddy got in his truck and followed the bus.  Every stop all the way to school and watched him get out and go into the building.  I cried silent tears but J1 noticed.  "Are you crying, Mommy?"  Yes, I told him.  It makes me sad to think about Daddy and tell these stories but they are funny too.  I pointed out how he had been laughing at the thought of Daddy following his bus.  He never knew!  It is good to laugh even if I am still crying.  "Are you still going to therapy, Mommy?"  Yes, I told him.  I am.

I want to keep Jeff's memory alive in all of us, even if it is still painful for me.  One day, I know, it won't be like this.  I don't want to shy away from this chance to tell the boys stories.  I also want them to know it's OK to cry, it's OK to laugh, and it's OK to be angry.  I want them to learn to face what is difficult and not try to run away from what is hard.  I never thought I'd be teaching them this lesson so young. 

I've been on auto pilot a lot in the past 18 months.  So many things that I have been distractedly paying attention too, even my own children.  Grief just seems to sap the energy out of you and leaves you with just the minimal of energy reserves to run auto pilot.  I am trying to change that.  I am really trying to pay more attention, be active, be attentive.  It is not enough to be here if I am lost in my own world, the past... where Jeff still is.

I need to disengage my auto pilot and challenge myself to live in the present.  Especially since auto pilot turned on me this week.  I can't trust it to not fly me into a mountain (4 places) so I need to take the wheel and keep my eyes open.

Wish me luck.

Sincerely,

Jeff's Wife

Knowledge

What makes me a good scientist makes it hard for me to deal with Jeff's death.  As a scientist I live for the mystery: searching, questioning, exploring until an answer is revealed.  In truth, I am usually tormented by this mystery until it is solved which also makes me good at my job.  That drive to continue to seek the answer when it is so elusive.

It is also what makes Jeff's death so hard.  Why did he have a seizure?  What caused it?  I have been searching for that answer since January 30th, after his first seizure.  And I was willing to drag him to every specialist doctor until I found the cause.  But then he died.  And even in his death I seek the answer.  Why? 

Because I live in fear of loosing my children.  Why did Jeff have a seizure at 42?  Could my children suffer the same fate?  How would I ever survive that?

And so I search.  When J1 was diagnosed with Celiac's disease in the laundry list of 250 symptoms that can accompany this intestinal issue is: seizures.  What????  My heart stopped.  I know that J1 has the "gene" for Celiac's disease which means Jeff or myself carried it also.  Could Jeff have had undiagnosed Celiac's could that have been the cause of the seizure?

I had a new avenue to explore.  With Jeff gone, I can't just pop him over to the lab and have his blood tested.  But I got mine done to rule myself out and then I'd get his parents to do the lab work.  Only, now.  I've stopped at myself.

I was the carrier of the gene.  I, and I alone, am responsible for J1's Celiac's disease.  While I was pregnant I played the game.  Will he have my hair, or Jeff's?  My eyes?  My nose?  Hoping he didn't get Jeff's funky toenails (he did, poor thing).  But how do you even consider the medical conditions you didn't even know loitered in your gene pool?  No one in my family had ever been diagnosed with Celiac's so it was never on my radar.

I'm Ok with knowing the gene came from me.  I certainly didn't plan on it, but there was no way to prevent it.  I love my boy just how he is and would never change him so I guess that means I can't want to change his gluten free gullet either.

But this news twists a different knife.  The death of an explanation for Jeff's seizure.  If I had the gene, he didn't and thus, he did not have undiagnosed Celiac's.  I am back to where I was before.  Not knowing the cause, not understanding the ramifications that this might have further down the line for my boys. 

I hate that.  I hate it, I hate it, I hate it.  I don't do well without answers.  I just sits on me like an elephant.  And for the first time in my life, I don't want to be a scientist.  I don't want this drive for knowledge.  I want to learn when to give up gracefully.  I want peace from not knowing.  I want forgiveness for not knowing.  If I can't have my life back, if I can't have Jeff back.  Can I just have that?

Sincerely,

Jeff's Wife

ps.  Jeff is holding a cashew on it's fruit.  We didn't know that cashew's grew on a fruit like that until we went through a cashew plantation on our honeymoon.