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.