All Good Gifts

So it's been a rough week, and rough weeks happen.  I've thought of Connor more this week than in the previous weeks, and not only because Mother's Day is almost upon us and it's making me nervous and sad.  Lots of things have been happening, both inside me and outside me, and life is complicated, so I've done my best to roll with it.

This morning, I saw a post on facebook that I've seen before.  A news alert that a family with a special needs child had their dinner check taken care of by a nameless stranger at a restaurant with a note delivered that read "God only gives special children to special people."

This is a lovely sentiment.  In my experience, it is also the cause of a LOT of anger and hurt.  And I know that this post may upset my friends who have said something along those lines to me/us, or my friends who are special needs parents, and that's not my intention.  But I've been holding this in for a really long time and I don't want it inside me any longer.

My first point - aren't the teachings of Christ (who, as a person raised in the Roman Catholic faith, is the standard bearer) that everyone is special?  In which case, every family is special, and every person within them is special.  This includes special needs (allergies? manageable blood disorders? sensory concerns?  CHECK CHECK CHECK).

My second point - do you know that when you tell me that God "gave" me this because I am particularly strong enough to handle it, it makes me want to lash out?  How unfair a God to settle this on my shoulders.  I am a good person - a rule follower, a nerd, I studied hard and performed well.  So, my adult life repayment for my hard work and strength is to be "given" a son whose needs are so great that people feel the need to tell me that it shows them how strong I am?  Guess what?  I ALREADY KNEW I WAS STRONG!  I don't need anyone else's affirmation of my strength by laying the blame at the feet of an entity not everyone even believes in! Those who have known me since my very young adulthood can tell you that I was unnaturally strong in high school, a time when being alive is already fraught with overwhelming emotions and irrational behaviors.  My reaction - well, I am who I am and I like me, so who cares what the rest of you think?

The thing is, I really do care what you think.  I want you all to think that I am a good person - the rule-follower, the nerd, the girl who studies hard and performs well.  It colors, and always has, everything that I do.  But on my terms. My success comes from inside me.  And if you don't like me, well, your loss.

Now, to get back to the idea that God gave me an extra-hard situation to showcase my strength to the world.  I don't think that God is like that.  I think He (sorry, Mom) already knows me, and knows that I don't need other people's affirmations.  I think that Connor was ours because that's just the way that things work.  Sometimes, crappy things happen to good people, and here I am talking about what Connor "got".  He was good, as I've always said, and he did nothing to deserve the life he was forced to live.  I will always be grateful that he was mine, and that I was already strong enough to take what he was given and make it a seamless and integrated part of my life, and the lives of my other children, just as Lee was able to.

If you want to acknowledge anything, acknowledge that it's a terrible shame that an innocent child was dealt a difficult fate, and let the parents know that you see them all.  But don't bring God into it.  Saying that God gave this specific situation to you feels like blame to me, and we've never had something or someone to blame.  We just are.  Our strengths rise and fall, just like everyone else.  If anything, I am most grateful that Lee and I fought through all the BS and nonsense of dating to keep trying hard for each other, because without his strength behind me (and hopefully, mine behind his) we never would have gotten as far as we did.  My bad days, strength-wise, were backed by his good ones.

Connor was my gift.  I'd be just as strong if he'd been completely healthy and was still with us.  It would just be showcased in a different way.

Turning 5

Last week, during  Spring Break, Tucker turned five, and what a glorious transition it has been.  He's still struggling with his temper and wanting to make all his own decisions, but it's getting better.

He was pretty exhausted after 5 days of non-stop gogogo with our friends the Croteaus and us.  I kept him home on Friday from the activities so he didn't fall asleep during his own birthday party. So instead of being cultured like his big brother, he did this:

He said, "Mom, I'm going to draw a picture of all of us."  As he drew, he explained that he and Daddy and Drew would be blue.  Because they are boys.  I would be pink, because I am not a boy, and Connor (short falter in his sentence) would be...green.  Granted, it's not the greatest representation, and I'm not sure which one of the boys he drew to look like Cousin Itt from the Addams Family.  But I like it.

When he was done he brought it to me and I told him how good it looked and that I could tell he worked hard on it.  He said, "Yeah.  You have to remember to take it with me when I go to the hospital."

Hm.  Why are you going to the hospital?

"When I die, Mommy.  I need it to come with me so that I can show it to Connor."

Well, knock me over with a feather.  I stopped washing dishes (see, Anne, even I did some dishes!!), dried my hands, and went over to him, explaining that we'd have to keep it safe for a long time because he wasn't supposed to die until he'd lived a good, long, exciting life.  He seemed fine with that.  I took a picture of the drawing in case it got lost/erased/etc, but I also knew that he was really growing up.

I hate that my children have to grow up doing this.  I hate that I have to, but I really, especially hate that they do.  As they grow up, they'll be asked about their family, and I hope they never stop answering about both of their brothers.  One day, the person asking will be special, and I hope they know that being a brother to Connor, for 4 years or 7, made each of my boys really, honestly special people too.

Break

This isn't our first Spring Break, but it's the first one where we've tried to really do something. My dear friend Anne, who dropped everything and rode the train down to be with us that terrible week, has returned with her family in tow. I've known Anne since 1995 - she was my one shining light in a long summer away from all I knew in a beautiful but alien land. To think - it was really just luck. I mean, if she hadn't been out on her porch, and me walking in, how long would it have taken for us to actually meet?  Too long to establish the bond, really.

Anne's first child was born within 24 hours of Connor. Her brave, smart daughter, who said to Anne, "Mom, I want to come with you to the funeral. I feel connected to him because we share such close birthdays."  She and Connor met a handful of times, and all well before her memories started to gel.  What an amazing person she is.

Anyway, Anne and her husband and children are all here, and we are running around, seeing sights, visiting museums, having fun. The boys love having new friends. Honestly, I don't know if Drew will recover from their departure.  I mean,who will play Minecraft with him? (Hopefully no one). And Tucker - finally 5, finally a big boy included in the games.

It's nice to have this break, and to share this place we love with friends who live 7 hours away.

We planned this break together last September. Connor's gift to us all is that we are getting to go places and do things that we couldn't have done with him.  Every day, I have to remind myself that taking advantage of the freedom we have now doesn't dishonor his memory. To the Air and Space Museum, the  Zoo, Mount Vernon. Stuff I wish my boys already felt were rote, boring ideas.

A lot of fun was had this week, and for me, a little more healing. I'll post soon about Tucker's artwork he created today. It deserves it's own place.

The long road back to "normal"

For the last 9 and 11/12 years, we have craved "normalcy" in our lives.  We are few weeks away from the anniversary of Connor's diagnosis.  Having an infant created a shift in our normal, but his diagnosis was a seismic shift into many unknowns - neurology, health insurance, therapies, early interventions, specialists - the list could go on for quite a while. Let's leave it at this - it was the best workout my liberal arts mind had since college.  A BA in History doesn't necessarily prepare you for medical terminology and advanced neuroscience.

In any case, we find ourselves craving some stability in this current state of normal.  As I wrote earlier this week, this extra time has thrown us off, and feels abnormal.  Recently, the boys had their first sleepover at their friends' home, and they did great.  SUPER great.  I couldn't be prouder of them.  I couldn't be more grateful to our friends who invited them over, but also treated them to ice cream (and frozen yogurt, as Tucker insisted he go to Tutti Frutti) and then one of them spent the night in their guest room on the same level as my boys in case they woke up in the night scared and in need of some grown-up reassurance.

It was just such a normal thing to do.

While they were busy being normal boys, Lee and I got dressed up and went to the 80s-themed auction for Tucker's preschool.  For the last 5 years, this is the premier event at the preschool, and I've volunteered some borrowed sound equipment and the music for the night.  Last night was my favorite though.  Music is it for me; it allows me to emote things I have never actually felt.  It's very evocative and creates an intense empathy in me, and sets my head aright again almost every time.  Going back into the bosom of my formative years, hearing some terrible and some fantastic songs from 1980-1989 just made me feel so good.  And at the end of the auction, people said, "No, we want to dance, can you leave the setup for longer?"

It was hard to say no.  It felt normal to keep playing music.  It felt normal to Rickroll everyone (and that should never feel normal).  I think it may be hard for people to see me singing along, or dancing, or laughing, or smiling even.  It's still intensely difficult to go out and be social for long periods.  After a while, our stamina gives out, and we just throw in the towel and go home, climb into bed, and let the sad wash back over us.  Are we acting "normal" when we are out so that other people won't feel so sorry for us?

A few years ago at my old work, after the bubble burst of late 2008, the new head of Administration introduced the overused phrase, "The New Normal" into our professional lexicon there.  In general, I hated it.  HATED IT.  But here I am again, with a new New Normal.

I hate it still.

But here's my new normal: Every day, I wake up and remember that I don't have three sons to care for any more.  I have three sons to care about, but in the day to day, I have two sons to care for.  And they get the very best care I can give them.  Food.  Clothing.  Cleanliness.  Education.  Fun.  Cuddling.  Lots of cuddling.
Some days, extreme amounts of cuddling.  Because the cuddling totally helps assuage the sadness that comes from my first realization every day.

Motherhugs

I've been getting a lot more hugs lately.  It's good, and I like it very much, but it's also a physical thing I can point to that is a distinct change.

When I was younger (read - high school and college, and even some after college) I was a hugging machine.  I loved hugging people, and I preferred to give big, healthy hugs to make sure that the people I was hugging knew that I meant it.  Slowly, as I matured (??) this wore off, and I found myself more likely to shoulder-and-air hug people, a style I abhorred.  Honestly, I wish I knew why this change occurred.  I don't, and that level of introspection isn't really needed these days, so...well...whatever.

Anyway, I'm getting a lot of really good hugs now.

When I think about the hugs, the one that stands out the most is the hug I gave my mother, and my mother gave me, when she and Dad arrived at the house on that horrible day.  Mom has fought this with us every step of the way, every day.  Connor was her oldest grandchild, and she lavished him with everything he needed until we had to tell her to stop.  Not because we wanted her to stop, but because she would just buy things, things that insurance should have been paying for, if we hadn't put our feet down.  She respected that, and I know that the delays and runarounds we got irritated her as much as they did us.

Despite all the hugs I had that day, I remember this one because we hugged each other the exact same way.  One hand covering the other's neck, the other wrapping the rest of the body close in.  It was protective - as if one of us could actually shield the other from the tornado of pain that was whipping through our world.  Cover your neck, protect your torso.  Very instinctual.

Calling my mother, having her answer the phone with a cheery, "Good morning!" only to blurt out, "No, Mom, no.  Connor's died." was horrific.  Of course, I did that a lot that day, but telling my mom was harder even then telling his brothers.  They may not understand, but she did.  She understood every word, and they broke her.  She can be put back together, but like Lee's and my brokenness, it's a difficult, arduous puzzle.  I don't know how long it will take.  I know that many, many people are putting themselves back together in a similar way - all the grandparents, aunts and uncles, cousins, friends, teachers - loved ones who loved him.  But I feel my mom's more because of our connection.

To do

I usually have a long "to do" list.  I love lists.  They keep me honest.

The things that never made it to my list were the things I had to do to make sure Connor was cared for properly at home.  I mean, picking up the needed prescriptions - always on the list.  Food - check.  But the feeding and care of him - that was just assumed into my day, like my own eating and washing, or even just breathing and blinking.

Now, there's this huge amount of time that is not dedicated to feeding him.  From starting to prepare his food until he'd consumed it all could take up to an hour.  That's three hours.  Changing his diaper was 5-10 minutes a pop.  Giving him a shower was 30 minutes.  The younger boys learned and adapted to this - now they don't need this attention from me or Lee.  They don't want us hovering over them.  I'm damned by my own desire to raise children who can operate independently.  Universe - not funny.

Today is something like the 10th snow day of 2014.  I sat on the sofa for about 30 minutes, staring at the pictures in my living room, nothing to do.  The boys didn't need me.  Connor doesn't need me anymore.  How do I fill this time?  Sitting around is not the right way.  Going outside is abhorrent right now.  I want to nap, but that will guarantee that someone needs me.  So I blog.  And I print out photos of the boys for Drew in his room at his request.  I get emails from clients who help me refocus.

Time to make a list for today.  And maybe, time to make a list for how to fill those spaces meaningfully.  It's no good for anyone to have empty time.  Connor's passing gave us the gift of time, and I have to use it well in his honor.  Anything less is unacceptable.

Getting a little out of control

So tonight, Lee came home from a Scout meeting, and not every leader there knew what had happened.  He brought it up assuming they had, and slammed the meeting's progress to the floor like a crazy wrestler.  He told me, when he came home, that another parent asked him what they could do to help, and somehow that conversation led to her asking him, "Wait, are you married to Colleen?"

This isn't the first time that has happened to him.  It used to happen a lot.  Some of you don't know this, but before I was a mother, and apparently a blogger with a blossoming audience, I was in a band in the area called Gonzo's Nose.  And frequently, especially when I was still performing with them, Lee would confirm to people that his wife was the girl in Gonzo's Nose.

So tonight, he said, "And guess what came next?"

"They asked if I was in Gonzo's Nose."  It was a statement.  A theory turned law in our lives.  Except not this time.

"No.  She knows your blog."

WHAT?  People this is crazy.

But, given that I have this audience, and I know there must be people who wonder how Lee and I got to where we are with Connor, here's something I wrote a few years ago, until today shared only with a very few people, about the day that he was diagnosed, at 10.5 weeks of age.  In the place where these previously private writings live, it's called April 23.  The date of the diagnosis.

In the days leading up to April 23, 2004, I had an upswell of emotions ranging from anger, frustration, despair and fear.  Connor had been showing increased behavior that was of deep concern to me.  We could both hear him at night having what we called “episodes” but there wasn’t anything we could do to stop them, and the exhaustion was so complete now that trying to get up to be with him only compromised both of our upcoming effectiveness during the daytime.  

When we’d been to the doctor at 6 weeks and I’d described the weird behavior I’d seen, they ordered an EEG right away.  Then it had taken 4, almost 5 weeks to get the actual appointment scheduled.  I went for a walk with Connor early in the week off the EEG appointment, which was set for a Friday.  It was starting to be warm enough to do so without me overworrying or thinking everything.  I was on the phone with one of my oldest and dearest of friends, and I said something I hated saying out loud, but hated even more keeping inside.  I said, “My kid is fucked up and no one believes me.”  There is nothing more I wanted at that time than to be proven to be the boy who cried wolf.  

The next day, Lee told me that he couldn’t come to the appointment.  I said okay, but got so unnerved about going alone that I finally reached out to one of my sisters who lived locally at the time and asked her to come with me.  It may have been the best decision I made during those first weeks that Connor was with us and I was suffering from exhaustion, and from other things I couldn’t even conceive.  And the day before the appointment, I had a visit from a friend, a doctor studying for his Boards.  Connor had an episode in front of him.  At the time he said nothing, but after the diagnosis he admitted that as soon as he saw it, he knew something was terribly wrong.

April 23, I bundled Connor up and into the car carrier, made the trip to the hospital, and found my way to the correct lab.  This is no easy task.  The hospital is large, and there are numerous labs where this test is done.  But, I finally found it, and registered, and filled out the requisite billion pieces of paper.  Then after a little bit, not very long, they showed us into a small room with a counter on one side, an adult size hospital bed, and an intimidating computer table with the machine that recorded the EEG on it, including the electrodes which were affixed to Connor’s head.

It took about 20 minutes for the technician to prepare Connor.  Preparing a person for an EEG involves using a waxy, lemon colored substance to attach electrodes to your head and chest, then wrapping the head to keep them in place.  He looked like a baby mummy.  They asked me to sit with him on the bed, so that I could hold him through the entire test and nurse him if needed, so for most of the prep time I sat gingerly on the hospital bed, holding him and trying not to displace any of the electrodes.  

They dimmed the lights in the room when they started the test.  Sleeping during an EEG is preferred.  I probably started to drift out too.  It was dark, and I was snuggling Connor’s very tiny body into me - how could I not?  My sister, the rock I needed, sat quietly in the guest chair in the room.  The technician at this facility did not sit in the room with us, but went to a control room where the complicated patterns an EEG produces showed on screen as well as were recorded into the computer.   Fewer than 10 minutes into the test, which I’d been forewarned took about 30 minutes, the technician came back into the room holding the telephone.  

“It’s your pediatrician,” she said with no inflection or indication of tone.  Taking the phone from her hand was difficult, because I knew right then that it was bad.  It could not have been good for our pediatrician to call me in the middle of this test.  I placed the phone against my ear, still cradling Connor.  Dr. F said, “Colleen, Connor has a seizure disorder.  It’s called hypsarrhythmia.  The neurologist will be in to tell you a lot more than I can about this, but I’ll be there tonight so we can talk more about treatment.”

The only thing I could think to respond with was, “Wait.  I have to stay?  He’s being admitted?”  Dr. F confirmed this, and apologized, and explained that we had to start treating this immediately.  I thanked him, and handed the phone back to the technician who had been waiting in the corner by the door.  Then I turned to my sister, and said, “I need you to do two things for me.  Please go outside and call Lee and tell him to come now.  I don’t care what’s going on at the office.  Then call Mom, and tell her I don’t know much about what’s happening yet, but that I need her to come.  Don’t wait for her to ask or offer.  Tell her I need her to be here as soon as she can.”  Erin immediately stood up, headed out the door, and left me there, in the darkened room by myself with my baby, wondering how in the world I would ever know what was normal again.  At this point, I hadn’t shown much emotion at all, and still I managed to keep it together.  It was me and Connor right then, and the last thing we both needed was for me to fall apart.  Despite the fact that he was 11 weeks old, and had some unspellable seizure disorder, I was all he had at the time and he needed me to be strong.

There are events in your life that push your trajectory in directions away from where you thought you were headed.  You go to college to study chemistry and find that your true interest lies in architecture.  You get a job and have to move away from what you know.  You meet a guy or a girl and something in them creates this spark that moves you closer to who you are meant to be.  You have a baby and your life moves to the side a little bit again, challenging you to adjust,  and to  learn how and when to draw a line in the sand for someone else.  But this?  This is the one that no one preps you for.  No one is going to sit you down and say, “Okay, so you are pregnant - let’s talk about how you will handle things if your child is blind/deaf/Down Syndrome/etcetera, etcetera, etcetera.”  You are on your own, even with all the services out there to  help you with this  transition.  For a little while, you feel completely alone, even with your spouse.  They are alone, too.  There is mental processing to do, and emotional processing, and then there is the day to day getting through and making sure that you have fed and cared for your poor stricken baby who did nothing to this world.  You have to make sure you are feeding yourself, and that you are doing stupid, mundane things like showering and sleeping and not living in filth, despite the fact that all you want to do is exactly that.  You want to stop showering, and forgo regular check-ups, and who cares about grocery shopping?  And on top of that, despite the fact that you want only to hold your baby all the time, you have to talk with your spouse.  Or re-learn how to talk with your spouse.  The reality is that when Connor was diagnosed, the national average for divorce was about 50%, but it was 85% for families with a special needs child.  It was 90% for families with a special needs child who passed away.  Ninety percent.  I did not want to be in that group, but for months I was convinced I was on my way.  We stopped speaking, unable to process our anger and grief in a reasonable and adult way.  The reality is, when something this horrible happens, acting like an adult mostly goes to the wayside.  You are far more focused on survival for you and your baby.  Everyone else is an impediment to you and the baby making it.  So you close them off.  

When she returned, the test had just finished.  She said, “Lee’s on his way, and Mom and Dad will be here later this afternoon.”  The technician removed the electrodes from Connor’s skin and tried to clean up some of the stickiness, and then showed us to a small treatment room where the on-call pediatric neurologist would come speak with me.  The doctor came in, and sat down, and proceeded to practically yell this to me, “The Baby Connor is very sick.  He will either have CP, be severely retarded, or die.”

So we were off to a good start.

Still I sat through her explanation of his non-medical-terminology diagnosis, which is Infantile Spasms, stony-faced and unemotional.  I’ve always been pretty strong in emergency situations.  I am not sure why, but I’m okay with turning off the emotions to deal with something catastrophic, but only for the immediate occurrence.  After the fact, I usually would break down.  We talked about the disorder some, but I knew that Lee would have a lot to catch up on so I saved most of my questions so we could learn about this together.  She said she had already contacted Admissions and was waiting to hear from them regarding a room assignment for Connor.  And me, of course, but I didn’t get a bed so I didn’t actually count.  She took us down to the main lobby to wait for someone to come get us to go through the Admissions process, and almost immediately after we got there, Lee came blazing in through the automatic doors.  Erin was waiting there for him, and pointed to where I was standing with Connor in his car seat/stroller combination.  I don’t think he ran over to me, but it felt like it.  

At the point of his arrival, I wasn’t alone anymore in this, and I felt freer to be emotional.  I started to tell him the terrible things that the doctor said to me, and he was beyond angry.  Can you blame him?  No one wants to believe that.  But then the doctor came back, and I introduced Lee and she told him the same thing, “Baby Connor is very sick.  He will either have CP, be severely retarded, or die.”  She then proceeded to tell us about the first course of treatment, which is a daily injection of a steroid named ACTH for 4-6 weeks.  After she finished speaking with us, Lee asked me, “Why is she yelling at us?”

At that point, we were admitted and given a room assignment, and escorted to the pediatric ward.  We started to settle in, and I said to Lee, “I need to go home.  I have to go get things for me and for him since we’ll be here a few days.”  Away I went, heading to the car in a bit of a daze and driving as calmly as I could muster back to our home.  I gathered up clothes, books, my breast pump, and probably some other things I can’t remember any more.  On the drive back to the hospital, I called the head of my office.  I was just over 2 weeks from being back from maternity leave, and suddenly I had a son who needed daily injections.  My mother was coming to care for Connor until we got him into daycare, and I could not ask her to give her grandson injections.  Not because she couldn’t do it - she would do anything for him.  I couldn’t let that be her responsibility while I hid from it.  So I called work and said “I don’t know a lot yet, but Connor has a seizure disorder and I need to extend my leave.”  I didn’t have the capacity to frame it any other way than the bald, stark truth.  The head of my office said, “I’m so sorry.  We’ll take care of it on this end.  Please keep me posted.”  It may have been the nicest thing I heard all day.

Lee called me while I was on the road - Connor was on my insurance and I’d neglected to leave my card with him.  He needed the details for the social worker the hospital had assigned to us.  Social worker? Turns out this is standard operating procedure with hospitals and patients and families with big diagnoses.   He said, “She’s trying to find ACTH for us.  It’s hard to locate, and it’s expensive.”  My heart, already low, plummeted even lower.  How would we afford this?  “It’s $1000 per injection.”  I may be bad at math, but I know that 6 weeks is 42 days,  and 42 times $1000 is $42,000.  Holy shit.

My next thought was ridiculous.  I thought, “We have to ask the band to do a benefit for us.”  Lee, as it turns out, was thinking, “We have to sell the house.”  Neither proved to be true.  I arrived back at the hospital, worked my way through to the room, and the social worker came back.  She said, “This is the best insurance I have ever seen, and I’ve been doing this 18 years.  We found a vial of the steroid here, so treatment will start today.  It’s the only vial on the East Coast right now.  I’ve also located a company that has some on hand, and they will be contacting you to arrange delivery for home administration.  You’ll only have to pay the co-pay.”

That was the only good thing that happened that day.

I called Connor’s godparents to let them know, and Lee stepped outside to give his parents more information.  To be honest, I don’t really remember our parents coming in that day, but I know they did.  When visiting hours ended, I was there with Connor, all alone and unsure what to do.  He’d spent most of the day prior to his first shot of ACTH having frequent and intense clusters of seizures.  Once the nurse gave him the shot, he calmed down.  Dr. F came in to the room around 9 PM.  He looked pretty wiped.  I expect I did as well.  We sat there together and talked about impact, treatment, short and long term prognoses.  I didn’t know this at the time, but we had gotten incredibly lucky when we went to the pediatric practice and interviewed with Dr. F.  The practice he is a part of assigns one of the doctors each week or month or whatever to do new patient interviews, and the day we were set up to come in, he was the on-call guy.  We met with two practices, and we liked his practice better.  He met us alone, whereas the other practice had a large group meeting and that was all.  Lee liked him specifically because he wore Doc Maartens.  I don’t normally pick medical practitioners based on cool shoes, but you can’t argue that he was smart to wear them, what with the Air Soft Soles.  And as it turns out, this pediatrician has an uncommonly high percentage of patients with special needs.  We could not have been backed up better.

In any case, we talked about medications a lot that night.  He told me that not every child responds to the treatment, and that it was possible that we would need to look outside the country for his medicine if that turned out to be the way he responded, or didn’t respond.  I remember telling him that I was more comfortable with Canada than Mexico.  I also remember thinking it was extraordinary to be sitting in an American hospital talking about willfully importing drugs that were not FDA approved.  

One thing I had noticed, though.  Since he’d had the injection, Connor hadn’t had a single seizure.  And when he did have one, and it was only one, it wasn’t as intense or as long and was about 4 hours post-injection.  And that was the last full-blown seizure he had until 2011 .