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 .

Fear

So about a half a year ago, my friend Tripp asked me to write a guest post for his blog at anglobaptist.org (see what I wrote here: http://anglobaptist.org/blog/posts/tuesday-colleen-wright/) and it was a scary experience for me.  My own friends knew, some of them at least, and only to a degree I shared, the fear that lives inside when you have a special needs child.  Probably my largest recurring fear surrounded churches.  It's odd to fear church - it's a building, with many doors, most of which lead out into the sunshine.  But I did fear church, because I knew from the very start with him that he would die, and one day I would be the grieving mother sitting in the front pew, inconsolable and shattered.

And I was.  Except in my inconsolation (Word?  Debatable.) I still kept my chin up, and made sure that his service was a proper celebration of him.  I stood next to my husband and we spoke to the congregants about how our son had impacted our lives (and their lives).

And now I don't have to fear church again, because I've done the worst thing I could do there.

So, where do I transfer that fear?

CVS.

A drugstore, also with doors that let you out into the bright sunshine.  I have spent an exceptional amount of time in CVS.  Up until very recently, his prescriptions weren't quite on the same schedule, so at least once a week I was walking in to pick up yet another one, usually more than once a week.  The entire pharmacy team and I became best buddies.  I would walk in, and they would say, "Picking up for Connor?"  When a new person started to work there, I would walk up and they would politely ask, "Who are you picking up for?"  I would smile, and say, "Connor Wright.  You'll get used to seeing me."  Of all the hundreds of times I've walked up to their counter, 95% of them were picking up for Connor.  One pharmacist worked tirelessly with me to make sure that insurance processed them.  See, lots of changes happened in this time frame to how prescriptions were covered and handled, and it was a maze to figure it out for the layperson.  T was my Inside Person, and she helped so much.  About a week after he died, I called CVS to have them cancel his prescriptions (I didn't want ReadyRefill to call me and tell me they were ready to be picked up).  As luck would have it, T answered the Pharmacy line, and I told her what happened and asked her to handle their end.  As she always, always did, she took care of me, and him.

But I didn't want to go back in.  I finally had to on Thursday evening. I needed a replacement watch battery. I was afraid to go in.  So as I have had to do frequently in the past weeks, I pulled up my big girl pants and went in.  I found the battery, grabbed some new nail polish, and slowly maneuvered so I could see who was back at the pharmacy.  T was there, but I couldn't bring myself to go back and say hello.  I knew if I did, I would burst into noisy, ugly tears and horrify all the kind, good people there that evening.  I sneaked back to the front, paid, and left.

The next day, when I opened the mail, there was a card from the entire Pharmacy department at CVS.  What an amazing thing.  The cards from my friends and extended family are wonderful, and heartfelt, and full of words I need right now.  The cards from near-strangers almost end me.  It's a reminder, and a good one, of how far and wide he reached.

But I'm still afraid of going to the pharmacy.

Sunny and Cher

Yes, deliberately misspelled, people.  I can still spell, even while heartbroken.  It's a gorgeous sunny day, making it hard to believe we may get 8 inches of snow in 48 hours.

Today, I drove to Barrett to participate in a balloon release for Connor and Bella.  Bella is his classmate who greeted him when he arrived in heaven last week.  In the car on the way there, "I've Got You, Babe" came on the radio, which immediately reminded me of the first weeks home with Connor.  You see, he was born in February, and while I was home recovering from his delivery and learning how to be a mother, I had the TV on during the day.  HBO, ever the "holiday"-themed programmer, was showing "Groundhog Day" approximately 14 times a day across their channels.  I watched it on HBO, HBO West, HBO En Espanol, HBO West En Espanol.  Over and over and over and over.  And then, one afternoon, I shook my head and shoulders and said, "STOP!  YOU ARE LIVING THIS MOVIE!"

So I stopped, despite my deep adoration of Bill Murray (fellow 9/21 birthday!!).  However, when I hear that song, I'm immediately reminded of my first weeks with Connor, before the seizures set in and changed him.  Of course, he had a crippling case of acid reflux - child's play compared to where we went from there.

But it also reminds me of many, many days when I would pick up Connor, and he would extend.  To those who don't work with physically compromised children (or adults, I suppose), extension means that when he was shifted around or lifted he would extend his arms and legs and spine all out, stiffening.  It made it very hard to pick him up, and I would have to break the pattern gently.  When I did that, I would say to him, "It's okay - I got you."

I got you, babe.

So anyway, I got to school, and signed in.  That was the easy part.  I took a deep breath and walked through the halls.  I turned into the hall where his class is located, and the walls outside  his classroom are festooned with cards.  Posterboards and small cards, every color in the rainbow represented.  It was so lovely to see, and totally cry-inducing as well.  I took pictures. They are below.

I went into the classroom - his cubby, his classmates, his artwork and pictures on the wall, as well as more cards inside the class.  Hugs from everyone.  His teacher Liz handed me a blue balloon (we were releasing pink first, then the blue ones for Connor).  I took the Sharpie out of my pocket and write Mom, Dad, Drew, Tucker, Ani, Pop-pop, Nana, Poppy, Miss Christy, Aunt Erin, Aunt Megan, Tio Tlaloc, Aunt Shannon, Uncle Todd, Aunt Julie, Uncle Joe, Aunt Kim, Uncle Brian, Jack, Henry and Mac.  His family.  Just a note from us to him so that he knows that we all still think about him all the time.  I took pictures of that.  Those pictures are below.

Then, before we released the balloons, his aide, Tate, came over and asked to sign the balloon too.  I gave him the marker and he wrote, "Tate.  Love you."

Good Lord, the people behind you, Connor.

Then we said your name, and I filmed the balloons going up into the blue sky.  The sun is so very bright today, and the balloons were a close color to the sky.  So as the balloons rose, they started to disappear into the color all around, and then when they went in front of the sun they were lost to view.  But I filmed it with my phone, and the link to that on youtube is at the end.  My sunglasses, the bright sunlight, and my tears all kept me from being able to see the balloons in real time once they were more than 50 feet away, but my phone captured their upwards meander pretty well, and I'm glad that I have it.

We went inside, and I said good-byes and promised to come back, and I will.  As I left, Tate stuck his head and shoulders out the door of the classroom and pointed to me, then back in the room, and then said, "Family."

I got you, babe.

http://www.youtube.com/watch?v=Ukb6WMPf4rg&feature=youtu.be

Lee's words for Connor

All, you've been so generous to us in these last six days.  Yesterday, Lee and I stood in front of a room filled with love and spoke for Connor.  We will speak for him our whole lives.

I posted my words yesterday.  Here are my husband's - spoken with such love and sadness and gratitude yesterday by him in a small corner of Virginia where we gathered to say, "See you later, little man."

Thank you all for coming. I am going to try and get through this and it may end up just me reading. Poor Todd here drew the short straw to come up and take over if I cannot. If I ramble or do not make sense I apologize. I want to be the voice for my Connor one more time. 

I want these words to be part of the celebration for Connor. I hope these words help you, who have supported my family for the last 10 years, find some peace and happiness. 

When anyone has a child I believe you make those silent promises to give them the best life possible. I know I made them before Connor was born and then certainly after. His first night home he cried all night. I swore I would never bring our baby into bed with us. I buckled at 4 AM and he finally went to sleep. I remember thinking what have I gotten into?

Most of you know I am fairly aggressive person that never walks away from a challenge. It defines who I am as a person. When Connor was diagnosed I felt for the first time that I had hit a challenge I could not beat. There was no answer, no fix, no cure, and it was happening to my son. I have heard so many times over the years from all of you how strong Colleen and I are but I will tell you I have never felt that way. However, being the people we are - we did push on and went after his issues with everything we had. 

Connor also decided to fight and fight hard. Although he could not talk, he could speak. The fact he did not use words just meant you had to listen harder. You could always tell when he was happy, sad, sick, and especially hungry. He would ya ya very loudly when it was time to eat. 

I have tried over the years to focus on the things that Connor could do vs. the things he could not. He loved his brothers who loved him. He played. He laughed. And he loved just being around his family. 

When I said every parent tries to give their child the best life possible I feel we did that for Connor. His path was meant to be different than what we expected but it was no less full of love. 

Now I have so many thank you's to give out I do not know where to begin. Our son brought so many people into our lives that we would never have known otherwise. I cannot possibly thank all of you as much as you deserve. 

To Doctor Fox at Sleepy Hollow - your care and compassion for our son was and is amazing. My father is a pediatrician and I grew up in his care. Your style of medicine always reminded me of my father and how he took care of me. It was always a huge comfort. Thank you. 

To Megan his physical therapist - there are no words, but we love you. He loved you. Thank you. 

To his teachers: All of you are the most amazing people who do a job I cannot fathom. The love and respect you share with your students is inspiring. I am honored to know you. Thank you. 

To our families: All of you have helped us so much, with helping us carry pain and grief when it started. Then helping us show so much love for Connor. I truly mean this when I say we would not have survived as a family without all of you. Somehow thank you is not strong enough, but thank you. 

To Mrs. Christy: On day 1, Connor puked on you. On Day 2, Connor puked on you. We really thought you would never come back. And yet you did. You were Connor's caregiver, his guardian, his protector, and his angel. Thank you.

To Colleen: You are always my light in the dark. I thought I was a strong person until I met you. It is and always will be me and you against it all. I love you. 

Lastly to Connor: Thank you for showing me true love. Thank you for all the amazing people you have brought into my life. Thank you for fighting as long as you did. I wanted more time with you but I know you are at peace. You taught me so much without ever saying a word. Rest sweet boy. I love you.

Words for my boy

Here are the words I spoke for Connor and to Connor today.  I'm so glad there was so much love surrounding us, and him, today.

Thank you all for coming here today to share in our sadness and our joy.  Connor is the magnetic force that binds us all here today, the star that pulls us into his orbit.   His birth brought me inexpressible joy.  Too soon after that joy, grief came, and they began a strange co-existence.   I sat in the hospital room with him and grieved for the life he would never have – the friends, the running and playing, the falling in love, and the, well, the everything that each of our lives have been.  I felt small, and helpless – but he was smaller, and more helpless.  So I hitched up my pants, dug in my heels, and started to fight back out.  He was a fighter, and we could not be shown up. 

How wrong I was to grieve for those things that day.  Everyone who met him, everyone – they just fell in love.  He had more love come to him than anyone I’ve ever known.  He formed the most amazing universe of loving people around him.  First Lee and I, then grandparents, aunts, uncles, cousins, friends.  Then the doctors.  Their staffs.  His therapists.  The daycare staff.  Our nanny.  Then his teachers and aides, his classmates, the schoolmates in other classes.  It just kept expanding, like an explosion of stars.

He helped us welcome his brothers, our brave, marvelous sons Drew and Tucker, and quietly educated them in compassion, and kindness, and love.  Their universes were expanded by their proximity to Connor.  And Drew, and Tucker, when you went on vacation with Daddy, Connor spent two days looking around for you and calling out in his own way for you.  He knew you were gone, and he missed you both, and the life you swirled around him.

In this universe around Connor, we had joy and grief moving all the time, shifting back and forth with a fluid grace that had no explanation.  And like any universe, there were–there are–mysteries.  We do not know why the seizures started.  Or why he outlived the initial, grim estimates of his lifespan, though we are grateful for the years we had.  We don’t know why it was his time on Saturday.  But Connor has no explanation.  Connor doesn’t need an explanation.  He came to us and lived in his way; the purpose of him was to bring us together. 

I miss my little son, but I still feel his presence, his gravity binding me to all of you, binding us together, and I know he did this to make sure we all had someone whose hand we could hold while we ponder this last mystery of him.  Thank you for allowing his gravity to bring you to him, and to us.  Thank you for joining us to grieve, and to celebrate, and to ponder.  

Connor

I cannot sleep.

I cannot sleep.

There are too many words in my head, and they will not be quiet.

It's almost 2:00 am on the day after Connor died, and I can still hear the words of my husband, and my children, and the police, and the doctors and nurses at the hospital, and all the dear, dear people we spoke to today, who saw our phone numbers pop up on their phones and said to themselves, "Oh, cool, it's Colleen/Lee.  I haven't spoken with them in ages." and flipped open their phones and we proceeded to break their hearts.  Our mothers.  Our fathers.  Our sisters and brothers.  Our in-laws.  Our friends.  

We could not have gotten here today without all you.  Each of you.  Even while I sit here, slowly leaking out all that is in me, I am inhaling and exhaling.  I am laughing while I'm crying.  Connor was good.  He was the best kind of good you could ever know.  And he just doesn't have to fight any more.

He's been fighting for so long, and I am filled with gratitude that he is with God now, and with all our family and friends who went before him.  I am filled with gratitude for everyone who has helped him and us.  I am filled with gratitude that there will be not a single day more that I will have to worry about him.  I miss him, but I have already heard his voice tonight, and know that the light I still have in my heart is his light.  

I sat with Drew tonight and we talked a good talk about this.  We'd never really prepared our other children for this.  It was scary, and I apologized to him for scaring him.  And then we named all the things Connor can do now.  Running around.  Telling jokes.  Playing piano.  I asked him if he thought Connor would be playing with Legos now.  He smiled widely and said, Yes.  What's his favorite set, Drew?

Drew and Tucker Legos, Mom.

Even with him gone, Drew knows that his brother wants to play with them and now he can.

I imagine I will be quiet here for a while, all.  I will reply to you when I can, and I will think of you a lot. If you are thinking of us, please come by.  Our doors will always be open, and we welcome the company.  It helps me to know how far the love reaches out from Connor to the world.  For a child of such limitations, the love that came to him was limitless, and I don't think a single person who met him didn't fall immediately in love with him.  

I just cannot believe today.