Adapt and Decieve

Adaptation is the name of the game when you have a child with special needs.  What ends up being insidious about it is how each time you adapt it deceives you.  It often takes an outside event to bring into focus how much you have adapted and altered your life to suit your child.  In my case: it was Jeff's death.

My little, J2, was an easy baby.  Easier than his brother who had major reflux as a child (another story).  Instead, J2 had some reflux but it was easily controlled with one medication.  He was a smiler, a happy baby, one I could cart around with me and would sit in high chairs or strollers or car seats.  That all changed at 14 months.  At 14 months he started having tantrums and I thought "damn, the terrible two's started early with this one."  The tantrums only got worse.  It is hard to qualify this but you just adapt to keep peace in your house.  You don't even think that something else is going on. 

I have a number of friends with autistic children.  A few of them waited a long time to take them in for evaluations and I couldn't fathom why.  Now I know. You adapt again and again and again until suddenly the mirror produces someone you don't recognize.  Each time you adapt you deceive yourself without conscience thought.  You alter to the new normal.

J2 didn't like loud noises, bright lights, crowds, the list goes on.  It was easy to just use the divide and conquer mentality.  I took J1 to an activity and Jeff stayed home with J2 where he was comfortable.

That all changed when Jeff died and I came face to face with two realizations.  One, I was alone.  And two, that I had a problem with my second child.  I didn't know what it was.  I just knew something was going on.

Days before Jeff's first seizure I took J2 for a speech evaluation with the county because I knew he was delayed.  They pretty much put me on hold for a few months to wait for his PE tubes to be in place.  It was May before they told me no services.  I went to a private speech therapist for him at that point.  None of this surprised me, Jeff had needed speech services as a child.  It seems like needing speech services is fairly common in children.

It was around the same time both my boys started working with their 3rd and final grief therapist.  About 4 months later, J2's grief therapist came out and spoke to me about Sensory Processing Disorder.  She had a handout and a checklist.  It made sense. 

As I read the information I saw Jeff in so many of the attributes of SPD.  I remember the first dinner out with Jeff's 3 closest friends.  One friend, KK reached over the table and grabbed the sugar packet caddy and placing it by her plate.  Saying something to the effect of "this stays here."  I remember thinking "OK... she must really need all that sugar."   I did think it was very odd.  It was much later that I learned that KK was willing to sacrifice her first impression to allow Jeff to keep his good impression.  Because he fidgeted with the sugar packets.  Jeff would pluck one out, bend it, twist it, fold it, play with it until it ripped and spilled on the table.  Then he got another one.  He did this throughout dinner.  It was his way of coping with a situation that required him to sit still.  It was just one of his many quirks that I and all his friends accepted.

It all seemed to connect so I signed up for an Occupational Therapy evaluation.  A few months later, I got the results.  J2 had multiple areas of SPD.  We started on 2 hours of OT a week on top of the one hour of speech a week.  I took him back to the county, and again, the county denied him services.  I was stumped.  I clearly had a child that had issues, speech and sensory.  How can he not qualify? 

At this point I was advised that maybe an official medical diagnosis would help with getting services from my county who is "well known for being difficult".  I took 6 months to get an appointment with the neuropsychology department and during that time I started to scare myself into thinking J2 was on the autism spectrum.

I had J2's consult and it isn't autism, "not even a hint".  Instead, he was diagnosed with ADHD.  So many elements fall into place with this.  So many ways I see myself and Jeff in J2.  I think either of us could have qualified for the same ADHD diagnosis.  I see Jeff in the way J2 covers his ears with a loud noise, I see Jeff when he complains about the bright lights, I see Jeff when he spins around in his chair until he falls off, I see Jeff when he fidgets with something in his hands at the table, I see Jeff when he falls down, I see Jeff when he knocks things over.  I hear Jeff in J2's rapid fire speech patterns.  I hear Jeff in J2's jump from topic to topic, in his excitement over events.  I see myself in the way J2 can't sit still.  I see myself in his anger, his meltdowns, when he cannot control himself or the situation he is in.

I appealed the decision with the county.  I forced them to conduct a full evaluation on J2 and guess what?  They found that he did qualify for services after all.

My heart breaks for this child.  The combination of all things that could go wrong from both of his parents.  There is one thing that Jeff's death has done for this boy: it has lifted the deception of "normal".  What was the new normal in our house was not normal.  Now I know why.

Now what do I do?

I adapt. 

Sincerely,

Jeff's Widow

Brave Face

My mask is slipping.  The brave face I've had on for so long.  I guess it was just a matter of time.

Days after Jeff's funeral I decided to make like as normal as possible for the boys.  That meant going right back into our daily scheduled lives.  I wanted to do what was best for them and figure out myself later.  I always do better when I am thinking of others and being a mother just personifies that.

I remember my godmother saying "Don't do it, I know you...you won't cut yourself any slack." And she was right.  I didn't.  I still don't.

I got up everyday when I would have rather stayed in bed.  I got showered and dressed, make the kids breakfast, got their lunches ready and school bags ready.  Got them dressed and out the door and to school.  I did laundry, grocery shopped and generally kept our lives running.  Then every night, after I tucked the boys in bed.  I would fall apart.  I would cry for hours, alone in my room.  I didn't sleep well, I didn't feel well.  It was at night, when the mother was done for the day, when the wife could grieve.

I credit this with getting me through the days.  I could have wrapped myself up in a blanket and not moved which was my preference.  But moving kept me going, kept me grieving, kept my crying.  As the days progressed I cried less but that doesn't mean I grieved less.

I had one of those nights last night.  I got the kids in bed and then proceeded to cry for hours.  I woke up, eyes puffy and circled and feeling like crap.  Grief is relentless.  There just is no end to it.  I can go through my day and run the house and mother the kids but at the end of it?  At the end of the day, I am a young widow who misses her husband.

I can focus on my boys and I worry about how the loss of Jeff will impact them for the rest of their lives.  Now, I've started to wonder how it has impacted me.  At first, I needed to talk to friends.  Now, I can't stand to be on the phone at night.  I want companionship but I just don't have the energy to put my part into it.  Right now I'm a taker and I don't know when I will go back to reciprocating in a friendship.  That has to wear on folks.  It would wear on me.

I know that my years with Jeff has made many positive changes in me.  I don't want to see grief erode those advances away but at the same time I will never be that person again.  The person I was with Jeff.  I don't know this new person.  I don't know if I even like her.  This person wants to hide when I would have confronted, this person cries when I would have fought.  This person has suffered an immeasurable loss.

I think that what I am grieving for now is the loss of self.  The loss of the person I was before Jeff died.  Sounds selfish, right?  I should just be grieving for Jeff.  But it isn't that simple.  The loss of someone like Jeff hits you in so many areas.  It isn't just the physical loss or the emotional loss but the loss of the future the loss of the promise of a life together.  The loss of the wife I was and discovering the widow.

Sincerely,

Jeff's Widow

Into Darkness

Depression's reedy fingers have a hold of my ankle threatening to pull my head underwater.  I had a rough week (http://survivingaftersudep.blogspot.com/2013/10/spirals.html) and I just didn't snap out of it.  My sadness was compounded by the dread I felt in awaiting test results for my youngest child.

Fear, dread, anxiety, anticipation is just fuel for the Molotov cocktail that is depression.  I slept too much (not enough), ate too much (way too much), drank too much (just right) and did the minimum of exercise all week (my bad).  I didn't have the energy to do much other than worry about myself and my child.

Thursday came and went and I was relieved to get good (ish) news about my boy.  But strangely, even as the sun was shining and the world wasn't turned upside down for me: I didn't snap out of it.  I thought for sure, after my appointment on Thursday that I would be OK again.

And then I realized: I haven't been OK since February 26th 2012. 

I'm not the same, I will never be the same and I am definitely not OK.  I have subscribed to the "fake it until you make it" mentality of daily life with my kids.  I don't want to rain on their parade so I put on the brave face and soldier on.  Right now, I am questioning my ability to even do that. 

Grief is strange.  I don't know if it is the time of year, the impending holidays, or if as a friend of mine put it: "I was just due".  But I've been into darkness for 10 days now and I don't have a flashlight.

Sincerely,

Jeff's Wife

My Mini-Jeff

I am on the eve of awaiting test results, valiantly attempting to not self-medicate with the Halloween candy in my pantry.  Instead I am reflecting on my youngest son.  This is easy since I just had his start of the school year parent teacher conference and I was struck again by how much he is a "mini-Jeff".  And I don't just mean how much he looks like Jeff but also in his personality and in his disorder.

What struck me in the conversation was her comment on him being a "bull in a china shop... but then he is genuinely sweet and apologetic as he tries to fix what he broke or knocked down."

That pretty much sums up Jeff as well.  Those of you who knew him are thinking of your favorite "Jeff story" where he broke something of yours and then fixed it.  We all have them.

Jeff could be clumsy, impulsive, and rather reckless but it always turned out in the end. The same can be said for my youngest.  I nicknamed J2 "crash" after he lost his front teeth at 3 years old and then broke the fake teeth the following year.  Because of the Sensory Processing Disorder he does not have a sense of where his body is in relationship to walls, furniture, people, the floor, etc.  He falls down a lot.  He crashes into things a lot.  He breaks stuff a lot.  He bowls people over a lot.

Jeff was driving his friend BT's grill to his new house.  The grill was in the back of Jeff's truck and not secured because "we weren't going very far" when Jeff decided very impulsively to show me the road where he crashed his car when he was 16.  The sharp right turn caused the grill to head left and smash across 2 lanes of traffic.  Jeff then proceeded, sheepishly, to collect all the pieces and then cobble the grill together when we arrived at the house (because all the friends involved in the move were to be fed their reward dinner off the grill, LOL).

Jeff never intended to destroy things... just as J2 doesn't intent to crash into people and objects.  But it still happens.  The saving grace for the two of them is how they react after the destruction.

Jeff always had a smile and a laugh and a good nature about his misadventures.  He would accept responsibility and then do his darnedest to right the wrong and he often could.  His friends and family accepted this as part of his nature.  Something of yours was going to break when Jeff arrived.  You just lived with it.  Jeff could enter a room and knock over a lamp and 3 picture frames and you wouldn't mind.

J2 pops up off the ground with a chipper "I OK!" and sometimes adds in the "I sorry!"  always with a bright happy smile.  He then works hard to fix and repair what he crashed into.  It is so Jeff that it makes me smile and gives me hope that he will integrate well into the world. 

We all accepted Jeff's quirks and loved him for it.  I have faith the same will happen for J2.

Sincerely,

Jeff's Wife and J2's Momma

Spirals

This weekend I spiraled lower than I have in a long time.  It is never just one thing: always an accumulation of events that does this to me.

I've been up and down and sideways for the past 6 weeks mostly dealing with parental issues.  It's stressful to have a child with special needs and it's stressful to have a child who gets bullied on the bus and it's stressful to have a child with a reading problem... life is just stressful.

This week however was also just difficult.  I was thrilled to have a 30 minute conversation with J1 about Jeff on Tuesday.  I know it was prompted by having out all of Jeff's Halloween decorations and it just gave me a boost to know that I was able to get them out this year.  J1 and I talked about Daddy's love of Halloween, second only to his love of Christmas.  And it segued into how Daddy would spoil them with a squirt of whip cream from the can directly into their mouths, or how Daddy would give them a few chocolate chips out of the bag while I was upstairs in the shower.  Or, shocker, how Daddy once made brownies while I was a church for MOPS.  It was great to hear J1 reminisce about Daddy and feel that love.  It made me cry, but I think I hid it well from him.  I didn't want to spook him into not talking about Jeff.  J1 doesn't talk about him much and I worry it's because he knows it makes me cry.

Good feelings were tempered however later that night as I put J2 to bed.  After kissing Daddy's picture he asked to talk to him.  While holding his picture J2 babbled a bit (I don't remember what he said first) and then said "I want another Daddy now."  If I was a fainting girl, I would have hit the floor.  I know this because I barely made it into a sitting position on the bed.  I immediately hit the kill switch on my emotions, put the picture back up and tucked J2 into bed.  To say that I didn't follow up is an understatement.  I was pretty bloodless at that moment.  I've thought about it since and who knows what that comment meant to a 4 year old?  Really what does he remember of Jeff other than the stories I tell him?  Who wouldn't want a playmate like that around?  I'm letting it go for now.  He is little and I would rather not have to talk about this with him.  I am confident that he was not expecting me to sign up for Match.com that night.  But it was eye opening to know that the thought of "another Daddy" passed through that little brain.

I also received a nasty shock at the last night of my group therapy Grief Share DVD session.  In this episode they are talking about heaven going over myth's and truths.  They said that you aren't married in heaven and I'm having a hard time with that.  That "Till death do us part" means that we aren't reunited in heaven goes against what I was led to believe.  Now, they are quoting scripture and I can't even begin to get into the details they raised.  But the comment was that we would "know one another" but that we are no longer married.  This has really thrown me for a loop and I wish with all my heart I had never heard it.  I also wish I could "choose not to believe it".  There are many things in the bible that we either choose to accept or decide are no longer relevant or possibly misinterpreted.  I don't know how I feel about this one nor do I have the biblical education to dissect it.  Right now, I've placed it in the back-burner of my mind to deal with it later.

My week only got worse as I learned that weekend was Jeff's 25th high school reunion.  On the one hand, I wish I didn't know.  I knew it was this year but I didn't know the weekend.  Somehow, learning this on top of everything else was the last straw and I hurtled down into the abyss.  However, I also don't want people to keep things from me that they think might upset me.  Honestly, it isn't any one's fault other than my own how I react to news.  I accept full responsibility for my downward spiral - so don't hide stuff from me OK? 

I remember the 20th reunion.  I was weeks away from giving birth to our second son.  I was huge, clumsy and exasperated.  But Jeff was so thrilled to go to his school and see teachers and friends.  I took it easy, parked like a whale at the table but I still got to meet a few folks and view the new campus.  How heartbreaking for Jeff's best friend BT to go to this event without him, and to possibly share the news to people who didn't know about Jeff.

It didn't help that it rained for days on end but I am slowing clawing my way out of this hole I dug myself.  I can't stay in here for long or I may take up permanent residence.  Spirals happen, especially after an advancement (my ability to say died).  I'm just hoping I make it out of this in one piece.

Sincerely,

Jeff's Wife

After Jeff...

I recently hit a new milestone.  Ever since last February in a conversation I would say "After Jeff..." just like that with no end.  I even have files labeled on the computer and in the cabinet that say "After Jeff".  Because finishing that sentence and adding "died" was too much.

It isn't denial, just an avoidance of the pain.  Every time I have to say that Jeff died just drives a spear through me.  How many times can I survive that?  I didn't know so I just didn't say it unless I had to.

Lately though I have found that I can finish the sentence.  I don't know when I started to be able to do it.  I just noticed that I could.  I am meeting more and more people that are new in my life and don't have my back story.  Eventually, it needs to come out.  I have found that this is not as monumental a task to talk about as it has been in the past.  Sometimes I can say "I lost my husband in 2012" and move on in the conversation without getting into specifics.  Once, I ran into a mom from when our oldest boys where in preschool together.  She didn't know about Jeff and I found that I could talk through the whole story without crumbling.

However, I still have my issues.  I look at Jeff's picture and I still can't fathom how this man died in his sleep.  I can't figure out why his children are growing up without a father and why I am alone now, after it took me so long to find him.

I've just completed a 13-week grief DVD series called Grief Share.  The topic of grief is not one that is easy to digest even for those who want to work through their pain.  At times, I don't like what the series says and other times I totally agree with it.

One thing they said that struck a cord with me was that grief means you will always have pain with the joy.  I get that.

There is joy at my son's birthday party and yet, pain because his father is not there.  There is joy in all these milestones I see in my children and the pain of knowing Jeff is not here to share it.  In these events it is my pain and not my joy... not yet at least.

Sincerely,

Jeff's Wife

Halloween

Last year, by October, I was well and good into my daze over Jeff's death.  I was doing the minimum to get by and was grateful that I could do get that far.

I couldn't face Halloween let alone the other holidays on the horizon.  I did my best to ignore the fact that Halloween was coming.  Other than buying costumes for the boys, I did nothing.  I didn't buy candy and I didn't decorate.  It wasn't until the day of Halloween that J1asked about the decorations but he was quickly distracted by the impending candy.  The fact was that I couldn't handle it. I couldn't handle any of it.  I was sleeping a lot and eating a lot and doing my best to believe that one day I could be happy again.  Halloween was just the first holiday of a doom-filled holiday season for me.  I was hoping it would go away if I didn't notice it was here.

Of all people, J2 was the one that saved the day.  J2, just a week before Halloween, changed his mind on his costume.  He was no longer going to be batman or Ironman (I don't remember which it was) he was going to be a "pretty pretty princess".

Yes, folks.  My 3 year old son wanted to be a princess.  Luckily for me he decided this the day of his preschool's bi-annual consignment sale and I picked up a blue princess dress for $7!  My MIL found a crown and jewelry at the dollar store and we were set.  He was so excited!  He spent weeks proudly answering all questions of "What are you going to be for Halloween?" with "A pretty pretty princess!"  Even  folks who asked him a couple times because they didn't quite believe his answer. He wore his dress to preschool for the Halloween parade and he proudly wore his dress on Halloween night.

He was a trip!  He was a delight!  He was the comic relief of a very sad holiday for myself and Jeff's parents.  When we could have spent the night wiping silent tears from our eyes mourning Jeff's absence from this holiday that he loved, instead we were laughing our asses off at J2 twirling in his dress.  He was exactly what we needed that night.

This year, J2 asked early to "make the house spooky!"  Yesterday, I got out Jeff's Halloween decorations and we spooked up the house.  It was great fun for them and still sad for me.  But this year, I did it.

Sincerely,

Jeff's Wife

Sucker Punch

I had an opportunity to gaze at my oldest child and I happened to catch his profile.  Really look at him and I noticed something amazing.  I noticed how much he, at seven, looks like Jeff.

I have always thought he took after me and not just because he's blonde and fair.  When I look at my youngest I see a carbon copy of Jeff, but my oldest has always had more of my features mixed in.  The two boys don't look anything alike.

Except now I see more Jeff in J1 and it hit me like a hammer.  J1 has always had Jeff's nose but now I see Jeff in his smile.  I see Jeff in the goofy way J1 is taking pictures now, usually with his tongue out or making a face.  I see Jeff when J1 still gamely eats the gluten free chocolate chip cookies that did not cook correctly and instead turned into cookie brittle on the sheet.  I hear Jeff when J1 proudly tells me he taught himself to write in cursive.  I see Jeff as J1 helped his grandfather build shelves in the basement.

I see Jeff in the boy that always had eyes on his father.  I look at pictures I took and Jeff is where J1's attention was.  I never resented it, I always loved that J1 was so attached to his father.

Even though now J1 is suffering greater than you can imagine.  I see only me, when J1 strikes out in anger.  I see myself when J1 stomps off yelling "it's not fair".  I see me when J1 has a fit because there is no time to ride his GoKart.  I hear myself when he cries.

I wonder sometimes how their grief will ultimately shape my boys as adults.  Will they learn that life is not fair but still worth it?  Will they still trust themselves to love and loose?  Will they adapt to life's pain or hide from it?  Will there be enough Jeff in them to counter my influence?

It is hard to watch your child suffer.  I can't take his pain away anymore than I can my own.  A love so great can only bring you equal pain when it is gone.  How is it fair that a 7 year old has to learn that life lesson when I am learning it at 40? 

Sincerely,

Jeff's Wife

Better Judgment

I wrote an angry post (shocker).  I was hurt and I was angry and I let it all out.  It was a good rant and it was very cathartic.  However, I hit the save button and not publish.  I sat on it.  And then in my better judgment I deleted it.

It is moments like those when I know Jeff will never leave me.  I would have hit publish and damn the consequences including the people who's feelings would be hurt (if they even read my blog).  However, Jeff is still an influence on my life, I could almost hear him tell me not to do it.

Instead you get this: my reflections on friendship.

Friendships change as we age and grow.  Various life events come along that change us as individuals and it affects the nature of our relationships.  Some friends will accept the change because they value the friendship, even if they mourn the new evolution of the friendship.  Others will let go because the change is too much.  In some cases a friendship grows in it's intensity.  It is life.

Learning to accept the change of a friendship is tough.  Recognizing that a friendship has changed is even harder.  I learned in the first year after Jeff died that I had friends, Jeff and I had friends together, and Jeff had friends.  Some of "Jeff's friends" are gone from my life by their own choice. 

I needed some time to remember that this is evolution and nothing to get angry over or hurt by.  I will tell you this: Jeff would never tell you if you hurt his feelings.  I heard about it, but you wouldn't.  I, on the other hand, will tell you if you have hurt me.

Wondering if this is you?  Call me, write to me.  We can talk.  Maybe we can patch things up.  Or maybe we can just say goodbye.  Who knows?

Sincerely,

Jeff's Wife