"Change, when it comes, cracks everything open."
Dorothy Allen

Thursday, April 28, 2011

Answer to the inevitable question

With all the stuff that has been going on in the last month or so, I have been fielding a lot of questions. 
"How are you/Geoff/Kathy/the girls?"
"Do you need anything?"
"What happened?"

But hands down, the question I am asked most often is "How are the kids?"  In particular, Sebastian.

So, I thought I would answer the question for everyone.  The short answer is- he's fine.  He really is.  He gets up every morning, he eats, he plays, he goes to school.  He still does most of the stuff he did before, he laughs and gets goofy.

But what I think most people want to know is - Does he understand?

This one is tougher.  Yes, I think he does.  But what exactly he understands and thinks, that is the grey area.  Let me start at the beginning.  Maybe I will figure this out, myself, through the telling.

From the time that Kit got sick and went into the hospital, I tried to be open and honest and, most of all, plain when I talked to Sebastian.  It is very difficult.  We adults rely of false platitudes and comfortable phrases all the time.  So, to be blunt and plain and straight forward and literal- it's painful and difficult.

The first day that Kit was in the hospital, I was home alone with the kids.  Geoff had gone earlier to be with his family.  I was waiting for news, to find out whether I should go or not.  I decided to talk to Sebastian about what was happening.  It was the first conversation I have ever had with Sebastian about death.

We were sitting in his room, playing on the floor.  I asked him if he knew where Daddy was?  He didn't.  I explained, "Daddy went to the hospital.  Grandpa is sick and he has to stay there".  Sebastian remembers his times in the hospital.  He actually remembers good things, and thinks the hospital is a fun place.  He smiles a little, thinking about the hospital.  I contiue to talk, trying to pick straight forward phrases.  I tell him that the sick that Grandpa has isn't like a cold.  There is a chance that Grandpa could die.  It was scary to say that word, that early in the game.  But I knew, I had to start preparing Sebastian as early as possible. 
By this time, I was crying, and it was hard to talk.  Sebastian doesn't get scared by tears.  He doesn't react to them often.  That has since changed.
Sebastian asked what we can do.  I told him that all we could do was pray.  We could ask God to help Grandpa and everyone else to be safe.  He knows about praying, we do that before bed.  So I said a prayer and he repeated all the words afer me.  I hugged him aferwards, because I needed the hug.  He didn't.
I ended up going to the hospital that afternoon and into the evening.  This began a tradition of Sebastian and Sawyer spending lots and lots of time with my mom and dad, while I was working or at the hospital.  Geoff was at the hospital pretty much from the time he work up until the time they kicked him out at night. 

We brought the kids to see Kit a couple of times.  Of course, now, I wish we had brought them every day.  Because Kit wasn't hooked up to scary machines or anything like that, he wasn't scary to them, they knew he was Grandpa and they didn't make strange. 

Sebastian would hug Kit, and touch his hand or his leg.  He would focus on folds in the blanket.  Then he would make his way to the chair in the corner, and sit with his pictures or papers.  After about 10 or 15 minutes, he would start to ask to go home.  It was often crowded in the room.  Noisy. Sebastian wasn't scared, but he didn't quite understand the point of being there.  All he knew was that there was no TV.  He was always well behaved. 

During the 2 weeks that Kit was sick, I would continue to bring it up with Sebastian.  Not alot, but often enough.  I wanted him to understand that it was ok to talk about.  I didn't want it to be taboo.  I didn't want it to slide from his memory.  But much of the time that we talked, Sebastian would lose focus.  He would drift, not make eye contact.  He would be doing something, and suddenly become hyper-focused on it.  It took me a long time to figure it out.  Call me slow.  This was his avoidance technique.  He struggles to express his emotion.  He can't say "I'm upset.  I don't want to talk about this."  He won't just sit and cry, because his sadness is overwhelming him.  What he can do, is when I say Grandpa is sick, he can fill his vision and his world with a picture of Jack and Sally.  When I talk about dying, and that Grandpa won't be around anymore, he can ask me if I like Wonder Woman, and if I want to watch Cats and Dogs.  He controls his environment with an iron fist, as often as he can.  I learned to respect that.  I still pushed.  Somedays I lost my patience.  I wanted to talk.  I wanted to cry with him.  Sometimes I yelled.  I am really sorry about that now.

The last time the kids saw their grandpa was Thursday, April 7.  We brought them in a bit late, I think it was 8pm when we first got there.  There was alot of people, as always.  Sebastian had given a picture of himself in front of the Count (The vampire on the Screamers poster, down on Clifton Hill).  Geoff had taken it in, and it was taped to the wall at the foot of Kit's bed. Sebastian looked at all the pictures, then parked himself in the corner.  We didn't stay too long, Kit was tired.  Sebastian hugged him and kissed him, said he loved him (after we reminded him to say it- which doesn't diminish the feeling behind it one iota) and said goodbye.  We didn't know it was the real goodbye.

On the ride home, I asked Sebastian if he had any questions.  He asked about what?  I said "About Grandpa.  How he is bed in the hospital.  Do you have any questions about that?" 

He was quiet for a few seconds.  Then he said " I don't understand why you are asking me that".  He had never used that phrase before.  I don't know if he meant to be profound, or if he was just really confused.  I explained "For some people, it bothers them to see people sick.  They feel sad, or scared.  I wanted to know if you were sad or scared.  Are you worried about Grandpa?  Do you have anything that you want to talk about?"

Again, quiet.  Longer this time.  I was just about to give up and move onto another topic, assuming that he was ignoring me, or absorbed in something else, as usually happened.  Then, quietly, from the backseat I hear "No, mommy.  I think I am ok".

We didn't talk about it anymore that night. 

That night was the night that Kit ODed.  We got the call at 12:30 in the morning.  Geoff went on the run, and I followed around 3am.  My dad came and slept here, so someone was here for the kids in the morning.  The kids spent the day with my parents.  About 6pm, I left the hospital, and went to visit them at my mom and dad's.  I filled them in on what was happening.  I hugged the kids, made sure they were ok and happy, and left again.  I toyed with bring them back with me, but Kit had been sleeping when I left.  My conversation with Bree-Ann was that Kit would likely not wake up again.  As much as I needed my babies, it served no purpose to bring them, keep them up, have to watch them when Kit wouldn't even know they were there.  They didn't ask to come back with me, so I left them there.

Kit died that night, at 2:04am.

After that, when we left, it was about 3:30 in the morning.  I helped Geoff's mom carry stuff from the room out to her car.  Eric helped too.  The fresh air was nice, after the heat and dryness of the hospital.  I walked over to our van, since I knew Geoff was on his way out.  I texted him - "I want to go see my babies".  He agreed. He understood. 

We drove straight to my parents' house.  We banged on the door and yelled through the window to wake them up. 

Once we were in, and I had stopped crying a little bit, my dad brought Sebastian in to see us.  He was still 3/4 asleep, and had no idea what was going on.  I started sobbing as soon as I saw him.  He asked why I was there?  I cried harder.  I tried to say that Grandpa had died.  I tried to hug him.  He recoiled from me, pulled away and turned into my dad.  My dad turned him around and held him, so that I could wrap my arms around him tight and sob into his skinny shoulder.  He was stiff as a board, uncomfortable.  Again, I wasn't playing by the rules of his world.

We ended up sleeping there that night, me in one twin bed, curled aronnd Sawyer, Geoff in the other with Sebastian.  Both kids woke up before us, and went out for breakfast.  I woke up the next morning, in my old room, in my parent's house.  I could hear Sebastian outside the door, wanting to come in and wake us up.  My mom was trying to hush him, keep him quiet, let us sleep.

That night, Aunt Shelia and Uncle Marc invite everyone to dinner.  Sebastian is his usual social self, staying in the computer room, playing by himself.  I bring him up for dinner, and decide to let him eat a piece of pizza as a treat.  Sebastian has decided that he is not going to eat.  Not one bite.  He and I fight, me trying to keep a grip, but really just wanting to slap his butt and sit him down, him wanting me to go away and leave him alone.  He pushes and pushes and I push right back.  I can feel the eyes of everyone on us, even though I try to be quiet, but Sebastian's whine is loud and piercing.  At one point, Holly says "Anita, he's had a long, hard day too."  I appreciated that.  Not even so much what she said.  But I felt that they wanted to say more, to say "oh just let him go".  But they didn't.  Not one of them.  And I appreciated that respect and love more than anything.  I let it diffuse a bit, and we all moved on.

I tried to talk to Sebastian a couple of times that day.  He neatly avoided the conversation, and I was too tired to push it.  I was determined to not leave him for a significant length of time.  We kept them with us, through most of the following days.  Without me ever having sat down with him, he seemed to understand that something had happened.  He didn't ask why we were home from work.  He didn't ask why Geoff wasn't at the hospital, when he knew that was where Daddy had spent the last 2 weeks.

Tuesday.  Visitation.  I was torn on whether or not I should bring him.  My mother firmly believes in not viewing bodies, whether you were an adult or child.  But I talked to his therapist at Brick by Brick, and she reccommended it.  Autistic kids are so literal, so visual.  He needs this.

We walk in together, him holding my hand.  We walk up to the coffin, a bit behind Holly, Dawn, Geoff and Kathy.  We wait our turn.  This gives him a chance to get used to the smells, the sounds, the feel of the funeral home.  When it is our turn, we walk up.  He actually looks.  Most of the time, he will glance, a second or two at a time.  But now, he looks. 

"Oh, there's Grandpa."  That's all he says.

Sebastian had a Wonder Woman toy in the van.  He is giving it to Grandpa.  It's hands are chewed off, the painted hair is worn off in places.  It is 100% Sebastian's.  Holly helps him put it in Kit's hands.  I was really worried that Sebastian would decide that he didn't want to give it up, that he would want it back.  He doesn't say a word.

I am crying so hard, I can't hardly breathe.  I try to be quiet.  I don't want to scare him.  He turns around and we sit on the couch together.  I hug him, and he hugs me back.  He can feel me shaking and he pulls back and looks him my face.  For the first time, he really, REALLY sees my tears.  He wipes them off my face with the flats of his hands. Don't.  Don't.  Don't.  He has reverted to one word sentences. There is real concern in his face and eyes, so I pull myself together.

Eventually, we make our way over to the picture montage.  Sebastian is more relaxed now.  It's just us, people he knows in the room.  I have stopped crying.  He slouches in a chair, fiddling with his fingers.  Holly brings him a teddy bear.  He hugs the bear, it is super soft.  Holly explains that this is his Grandpa bear.  When he wants to hug Grandpa, but can't, he can hug the bear and Grandpa will feel it. Sebastian looks at the bear and drops it on the ground. 

"I don't like it."

He knows that's not is Grandpa. 

Eventually, others come.  Lots of others.  I had made arrangements with my parents to come about 230, so that the kids could be there for the beginning, and then leave with my mom and dad.  About 130, Sebastian, overwhelmed by sensory input, shuts down.  He sits in a chair, closes his eyes, and is asleep about 1 minute later.  I realize we are seeing another coping mechanism.  If this helps him live through this, I will let him sleep.

The next day was the funeral.  I wanted Sebastian to sit with us.  Sawyer was going to stay with my mom and dad, in the back, in case she got fussy and had to leave.  But when my dad showed up to take her in the morning, she threw a fit and there was no way she was leaving.  Sebastian said he wanted to go, so they traded places.  When we got to the church, I asked him if he wanted to come sit with me and Daddy.  He didn't, he wanted to stay with Grammie and Papa.  I didn't see him much during the service.  According to my mom, the bagpipes bothered him.  They were loud.  Again, Sebastian coped.  He stretched out, closed his eyes and slept his way through the service. 

At Betty's Restaurant after the funeral, he was good as gold.  Geoff's aunts made a real effort to talk to him, and play with him.  We laughed to see that he can wrap his arms comfortably around Aunt Lana's neck.  Aunt Lana kept up with his awkward gait and weird, dancing walk, and turned it into a waltz.  It was lovely. 

In the weeks following, life gradually returned to a new normal.  But there are cracks in his armour.  He is acting out.  For the the first week, he didn't want to go to sleep.  He slept with me for about 4 days.  He would break down and cry.  He hit his sister, and would push her down.  He refused to eat, or would sneak food he knows he isn't allowed to have. He talks back.  He ignores us.  He messes up his room, and refuses to clean it up.  Yesterday at school, he had a breakdown and needed a sensory break. 

But then, there are the good parts. 

Three separate times, I have asked him a question before he goes to bed.  As he climbs into his bed, and I tuck him him, I asked him,
"Does Grandpa come and visit you in your dreams?"

Normally, if Sebastian doesn't understand a question, he will answer one of 3 ways- he will ignore the question, he will just repeat the last words you said, hoping that will answer it and you will go away, or he will ask you to say it again, because "I can't hear you."

All three times I have asked, almost immediately he has said "yes".  I asked him what Grandpa says.  He says he can't remember.  But he smiles when he says it, so it makes me think that they talk about good things.  I always tell him, if he sees Grandpa tonight, tell him I love him.  And Sebastian says he will.

So, I guess that is the long answer.  Yes, he is fine.  He is healing.  Thanks for asking.

Rosie N. Grey
The N stands for "new normal".