Old Friends...

Sat on their park bench like bookends...

(sorry it's blurry - 7 year old "photographer")

Back in high school, I finally stopped unilaterally despising the music my parents listened to and finally gave it my own listen.  I had been so consumed with finding my own path that I was closed off to things I eventually embraced.  One of them was Simon & Garfunkel.  And Paul Simon gave me the alternate title for this posting - Still Crazy After All These Years.

On the left - Kristen.  My dearest, closest girlfriend from high school.  Outside of my family, knows more about me than anyone on earth.  You know when you first meet someone, and your brain clicks in and says to you, "Yeah, hold on to that one.  They are gonna be good for you."?  That's what happened to me when we met freshman year of high school.  It was rocky at times, and we've argued, because everyone does, but it's all in the past.  She accepts me with all the extraordinary faults, and has celebrated my weirdness since day 1.  When I picked a college, I chose University of Virginia.  Basically, I picked a school that was going to essentially surround me with people like her all the time.

On the right - Sean.  When I was 15, I was in Godspell at his high school, and he was in the pit band, which was essentially only 5 people.  First band cue practice we all met - cast and band.  It's possible that within that day we became friends, but it was certainly cemented within the run of the show.  One of my favorite memories of high school is before school each day senior year (I had an exchange class at his school) I would arrive, head to the library, and sit at the same table every morning with other students waiting for the first bell.  He was always there with me; or maybe I was always there with him.  Who knows?  But we were simpatico, and always have been.

We all went to Governor's School together - one for academics, one for vocals, one for music.  We've orbited around each other for decades now.  I moved away, then Sean got married, then Kristen did, then I did.  I had them both in my wedding.  Then Sean and his wife moved away - way away, and it was much harder to be in touch.  But when it mattered, we did.

Back in February, I called Kristen on a Saturday morning.  I know she answered in a second because we don't talk to each other on Saturdays.  We talk in stolen 3 minute increments on weekday mornings.  Like moms do.  Sean I hadn't spoken to on the phone since, I don't know - 2005?  We'd communicated mainly via email and facebook.  I really hated that he found out what happened on facebook, but I had run out of ways to call people that day.  Kristen called or texted every day and was with us at the service.  Sent me hilarious cards to remind me to laugh every once in a while.

Sean sent me a message on facebook at 11:00 the night Connor died.  I was on my iPad, unable to sleep.  We ended up chatting online for 2 hours.  I told him early on the conversation that I was really having a hard time dealing with the idea that this day was going to end.  It was so hard to think of the day he left us leaving, and he got it, and he kept me talking to him through the change.  I finally made myself shut off at 1:00 am, but still couldn't sleep.  After 45 minutes, I gave up, booted up my laptop, and wrote the first posting on this blog about what happened.  That posting got far more attention than anything I have written.  As of today, it has over 3000 viewings.

So when Sean told me he was going to be in Pennsylvania in July, it was something bigger intervening.  Kristen and I had already made plans for a mid-July day at Sesame place with some of our children and the Imagination Movers.  Without considering anything at all, I said, you should join us.  He did.

Sitting on that park bench, even slightly out of focus, you can still see the young us and the current us together there.  I am bracketed by people I have been lucky enough to be loved by for 25 years each.  I really, really hope they know how much I love each of them too.

Preparation

I'm a reader, and always have been.  When I was much younger, I would leave the bedroom door open, so that after "bedtime" and lights out, I could read by the light of the hallway lamp that my parents left on for my brother and me.  Of course, in terms of the health of my eyes, this was not the best choice.  Alas.  Too late to change it now.

In any case, once, when visiting my cousins in Greenport, NY, I was introduced to a book called "Wren" by Marie Killilea.  I was still quite young, under 10, I suppose, given when they moved away from Greenport.  This book was non-fiction, and the story of Mrs. Killiea's daughter, Karen, born prematurely, which resulted in her developing cerebral palsy.  At the time Karen was born, the doctors recommended that she be sent to an institution and forgotten there as she would never be able to learn, communicate, or care for herself.  Karen's parents said forget that, took her home to her family, and she grew up and thrived and learned and communicates and cares for herself.  Yes, I know that I changed the tense there, but that's because Karen is still alive today (http://en.wikipedia.org/wiki/Karen_Killilea).  This was the first time I read something about special needs.  I was enthralled - look at what this family is!  Look at what this little indomitable (I'm not sure I knew that word then) did!  I know I was impressed with them, with her.  I'm not even sure if my parents ever knew this.  I bet they did.  They always knew way more than I thought they did about my life.

And I re-read it, probably 20 times.  I was a big re-reader as a child, and to a certain degree I still am.

At age 30, I picked up the new book by an author I favor, Lorna Landvik, and started to plow through it.  It's called "Welcome to the Great Mysterious" and about sisters (one of whom has a son with Down syndrome).  A subplot in this book is about the son/nephew and his best friend, who has CP, and who dies during the pages of the novel.  I was pregnant with Connor when I read this, and Lee came in and found me in tears reading this book.  What's wrong!?  Oh, this stupid book...

This one I have not yet re-read, but it's still in my small actual-book library.

Both these books must have been somehow placed in my range to help me prepare, not that I could ever have properly prepared myself.

It's been 5 months.  Well, a little over that.  Lately, we've all been having our own funks, and I imagine that it's related in some way to Connor.  Drew decided after months of growing his hair into an epic nest of insanity each morning to have us give him a buzz cut.  "I want a haircut like Connor's," he said simply to Lee.  So Lee did it, and Drew was TRAUMATIZED.  Seriously.  He hated it.  We talked him through the lack of tangles (which had been an ongoing problem), the quick dry situation he was now in, the fact that putting his swim cap on now will not hurt.  And of course, the old stand-by - it's hair - it will grow back.  He's come around to it.

Yesterday morning, I sat on the sofa with Tucker snuggled in to me, and Drew snuggled in to him, and I rubbed the top of Drew's head.  After about a minute, the message finally made it's way from my fingertips and palms to my brain - this feels as it did when I would rub Connor's head - and I clenched my jaw and fought the tears welling in my eyes.  I tried to tell Lee later, and he said, before I could even finish my thought, "It's feels like Connor."

There are so many things we are just not prepared for.  I am blessed that the people I know will allow me to contemplate my bellybutton while I work through this at times terrifying grieving process.  You don't know when you wake up in the morning if you will be having a good day or a bad one.  But you have to get up.  I have to get up.

Our last Miss Christy Day

It's hard to find the right words sometimes.  Today is the last day we have our nanny, Miss Christy.  She who swept into our lives almost 8 years ago, still a little fresh with her own grief from losing her daughter who had many issues that were comparable to Connor's.  How she swept though!  It was hard, going to work and leaving Connor here with her - a virtual stranger!  But we did, because we are grown-ups and we have to relearn how to let go every once in a while.  As Lee mentioned in his eulogy, the first day she worked for us, Connor threw up on her.  The second day...he threw up on her.  Connor did what little he could to push her away, and she kept coming back.  She adopted him as her own, and cared for him tenderly.  Then Drew was born, and she reveled in having an infant to care for as well.  Drew went from tiny, mewling newborn to the big, strapping 7.75 year old he is under her protective wing, and he is a gentle, smart boy.  She is the person who sat with him and reviewed the alphabet when we were at work.  She is the person who helped him learn his numbers, in both English and Spanish.  She helped him learn to eat with utensils, to walk, to jump, to run.  She took him to school and home.  She met another nanny and brought that nanny's children into our circle, and we made lifelong friends that way.

And then we went and had Tucker.  And she did it ALL OVER AGAIN.  While doing everything at the same level for Connor and Drew.

We had to call her and break her heart in February.  She'd left the evening before, her usual Friday departure, saying "Have a good weekend!  See you Monday!"  Connor had been fed and cared for - by her.  The next morning, we shattered that little peaceful weekend, and within an hour, she was at the house to share her grief with the rest of us who were grieving here.  At the service, she tried to sit in the back and be unobtrusive with her husband.  My sister, under direction to find her, swooped in and brought her to the front pews.  She's family to us, and she sits with us, always.

She's simply amazing.  But the boys have outgrown her, and a new family needs her.  We couldn't recommend her more highly, and we are all on edge today, doing everything we can to keep ourselves together because we know that it will be hard at the end of the day to say our final good-bye.  Of course, we'll still get her to sit sometimes (and will be happy that in addition to seeing her, and the boys spending time with her, the kitchen will get cleaned up to a crazy level and she will do the laundry.  She just can't help herself).  Thank you for giving us 8 years of love and devoted service.  We will all miss you more than we can say.

New Growth

Today, a tree was planted in my backyard.

It was a gift from friends, and I hope it can make it.  It's a little thing right now, and I hope that getting it in the ground, with lots of fresh air and sunshine, will help it grow.

When Connor died, the women with whom I graduated high school worked together and sent us a seedling too.  And one of them, a horticulturalist, also had one planted in Islamorada, FL, where she lives and works, in his honor.  And our next door neightbors gave us an apple tree kit, which is the kind of tree Drew wants to plant when we inter the ashes.  And my Prison Listers - my college friends from our residential college - planted a tree in Connor's honor at Tuckahoe Park about a quarter mile from the house and next to the school where his beloved Ms. Robin teaches (and taught him).  And then another dear friend from college offered to have a tree planted somewhere nearby in Connor's honor.  I told him we were overrun with trees, but suggested that he plant a tree where he lives in Roanoke to commemorate my sweet boy.

And then...an idea started to germinate.

(See what I did there?)

What if we planted a tree everywhere we went, and helped populate the earth with more green in Connor's honor?  Not to a micro-level (or, if I were being hipstery, going meta on this idea...) so it's not as though I am suggesting that each time I drop my kids at school, or go to 7-11, I'm going to plant trees there.  More along the lines of wherever we take family trips, we work in either the planting of a native tree or arrange for that to take place before or after if necessary.  Something we can do as a family and honor our son and brother together wherever in the world we decide to go.  Because we already feel that we need to go further and see more now that we can, and if we can help the earth in doing so, in his name, well, all the better.

So, if the spirit moves you, go plant a tree for Connor. Try to take a picture of it and send it to me. I'm going to start an album of Connor's trees. Including follow up visits too, years in the future.

Looking Back

There are a lot of days where I am focused on looking back at what transpired and thinking exclusively about me.  The movie-like images that are all I can really remember of the day, and how I heard the words from Lee.

Then there are days like yesterday and today, when I look back at the messages I received on email, in facebook, and texts.  I listen to the voicemails that old friends left me.  I tear up, and I laugh sometimes.

I cannot believe how much love is around me all the time.  It is so shocking, and uplifting, and daunting.

This won't be long today.  Just thank you.  And while I'm lacking the capacity to express it properly to you, I love you right back.

Connor(s) to the Rescue!

So last week, I had a business transaction that went sideways quickly and at the very end.  I don't want to go into too much detail as to what happened, but it involved one of Connor's teachers, and it showed me once again how present he is in my life.

When things went south, I started calling around to see if there was a company available to fix things that were needed that same day - like IMMEDIATELY.

First call - we can come tomorrow.  Tomorrow is too late.

Second company - let me check and get back to you but it doesn't look good (they never even called back).
Third company - I think we can, let me place you on hold while I confirm for  you.

It was while I was on hold that I realized that I was on the telephone with Connor's Pest Control, and I knew in that instant that it would all get handled and the deal would finalize.  But I waited/paced incessantly while they confirmed the appointments, and then I went and told Connor's teacher, her husband, and everyone at the table what the new plan was.  Then she and I looked at each other, and I said, "The company that's coming is Connor's Pest Control." and we burst into tears together.

Those poor souls at the table with us.  They had no idea why that made us cry.  As she composed herself, I explained and apologized profusely.  It was so unbelievably unprofessional, and I am embarrassed by it. However, I also recognize that it was meant to happen given how that was going, and so I apologized, explained, and moved on.

Later, I sat in their new home, worked with the engineers and technicians, and prayed hard to Connor, thanking him for helping us out.

And when I got home, I drank ALL THE BEER I wanted to.

The next night, I went to see the new Godzilla movie.  I could have used some Connor in that too.  It was such a boring monster movie!  But I think I had used up all my Connor-karma in the previous day.

Just remember - the ones we love who have gone on are still out there in unexpected, often overlooked ways.  Keep your eyes open.  You never know where you will see them.  In rain when it's hot and dry.  In a good day at school for one of his brothers.  In the Pest Control Company that saves your deal.

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.