A little gift

On Christmas morning, we had the traditional raucous early morning shenanigans with the boys. Joy was delivered. Fun was delivered. 

When the dust settled some, Lee went out to ride his bike, the boys spread out to build new Lego sets and play new video games, and Lee's parents headed to our next destination, Richmond. I sat in my pjs in the living room, drinking coffee and contemplating Christmas, and in my peripheral vision I saw an ornament fall off the tree and float down. It was a school special - foam casing and holiday photo, so no breaking occurred.

It was the last Christmas ornament made by Connor which fell. In it, he is wearing a Santa hat and beard.

I carefully picked it back up, said hello and Merry Christmas, and put him back on the tree. Then I sat back down and contemplated visits from heaven, and was overwhelmed with all the feelings one should have when your windless living room has an ornament fall off a tree when I am there, and sipped my coffee and managed not to cry.

Overall, it was a magical Christmas.

Happy Jackaversary!

A year ago, we were approved to adopt a dog. We emailed the foster family, and got back an email once we set a time that said, "I'll pack up his food and find the shark."

I mean, could this dog be ANY more suited to our family. He loves sharks, like Lee! The first weekend was a raucous and joyful time, and at the end of each day he curled up on the sofa, exhausted from learning his new home.  

We've given him a bunch of nicknames this year.  Here's a brief list:

Fortypaws

Commodore Snorington

The Pooh

Jackie-poo

Within the first week, he managed to open the garbage and consume a chicken carcass and then get stuck under the deck, in the dark.  Now we always take the garbage out as soon as dinner is done when we have a rotisserie chicken, and we have a lock on the cabinet where the trash is. And he remembers not to clamber under the deck

Also within the first week, he snookered us into letting him sleep on the bed with us. Very occasionally, he sleeps with one of the boys, but most nights he's curled up at my feet, and when I wake up in the morning he has stretched up alongside me. He goes out, but then comes back up and snuggles with me, as if he knows that getting up in the morning is always the hardest thing I have to do every day. I can coast once the day starts, but getting out of bed, facing that I have to get through another day when I'm just not feeling it. He puts his head on my chest and looks at me like I am the greatest thing he has ever seen (including a chicken carcass.) He is my dog. Our prior dog, Shadow, was Lee's dog, despite me being the one who adopted her. Jack picks me, every time. I very selfishly love it.

We have an unknown number of years left with this dog, who is energetic and sweet and gentle and snuggly and a scavenger and smart and an absolute perfect fit. We're going to make every single moment of those years count. Someday, I'll be laying my head on his chest, and looking at him like he is the greatest thing I have ever seen, because he will be old, and frail, and fading, and I need him to know that he helped us become stronger as a family when life was really, really rough. 

Anchors

Sometimes, if you think about it, the world is a pretty tumultuous place. I mean, we are barraged nowadays with bad news. Paris. San Bernadino. Politicians attacking citizens, Americans, because of their faith.  It's easy to feel rolled over.

This past weekend, I headed out to sit around and watch movies and commiserate with one of my oldest friends. She's an anchor to me, and as I drove the three hours home I started thinking about anchors as a positive thing. Because if you are really, really lucky, like a large ship or even a supertanker, you have multiple anchors. When you need those anchors, you reallyneed them. They steady you in the storm, and keep you from getting as battered as you would if you were bobbing along.

So with all the tumult going on, let's remember where our anchors are, and let them know we are their anchors as well.  The parent or parents you rely on. The siblings you don't live with or near any more. The friends in your particular village. The friends from your history who remember who you were and how you got to where you are.

Find your anchors and take care of them.

Baptism

Recently I had something of an epiphany. Some of my friends are religious, some are not. Lee and I aren't particularly religious, but I think it's fair to say that I am more spiritual and faith-interested than he is. When we were expecting Connor, I wanted to join a church so we could have him baptized. Long story short - we joined a church, a Lutheran church where we liked the pastor.

Now see, in my family, baptism was an early-in-life event. We have a baptismal gown that came from my side, and I wanted my son to wear it, which required a certain timeline to be established. We picked a day that worked for the church about 6 weeks after Connor's birth, ensuring he would still fit the gown. We made all the arrangements. Family, godparents, friends joined us at the regular service and he was baptized. At the end of the service, he was paraded up and down in the arms of the pastor to be greeted into the church, which I liked very much. Afterwards, almost every person in the church came over and touched him, greeted us, etc.

EVERYONE TOUCHED HIM. And a few days after all those people touched him, he developed a fever, his first.

I called the pediatrician's office, and they scheduled us to come in that evening. The senior member of the practice saw us and checked him out, and he said, "Anything else?" I thought about it, and then said, "You know...he did this really weird thing a few days ago..." and proceeded to describe a seizure to the doctor. He thought for a moment, then said, "You know, that's not normal. I think I'll ask them to do an EEG while you are at the hospital." We had assumed they would tell us to go home and give him baby Tylenol, so I was surprised that we were headed to the ER instead. Babies that young they don't mess around. They sent him to the ER to ensure he didn't have meningitis. So off we went, spent several days at the hospital, but never managed that EEG.  We had to go back, about 4 weeks later, for that appointment. In those 4 weeks, Connor changed dramatically and was mostly unresponsive to us. The test only confirmed what was essentially known in our hearts.

And I was so mad at that first visit to the hospital. What was wrong with me? Why had I let all those people touch him? Breathe on him? I hadn't protected him; I had let him down.

Now almost 12 years in the future, I realize that his baptism extended his life enormously. What if he hadn't gotten sick then, and the doctor hadn't thrown in that open-ended...anything else? Had we not intervened so early in his life, the likelihood that his body would have been so consumed with the seizures that their initial expectations of less than one year would have been most likely to be correct.

Having Connor baptized there kept him with us. And I have forgiven myself for letting everyone touch him.  I would gladly spend another 4 days in the hospital in exchange for the extra days I had to spend with him.

But I still waited until Drew and Tucker were 6 months old (or more) before having them baptized. I'm sad that they couldn't wear the family gown, but that sadness is outweighed by their good health.

Aca-mazing

A long time ago (sorry, but the truth sometimes isn't kind...) I went to college.  When I arrived, there were things I said I would never do.

1. My choral career was over.
2. I was done with theater.
3. A capella music? Pshaw. Insane. Never.

I made a lot of stupid choices, as everyone does when they first move from shelter into the big world. Finding yourself is hard. I had done choral music for my college applications. Well, I was in college. That one, I kept. No sweat.

Within 1 year, I had broken #2. I was not done with theater. I minored in theater, learned a new craft (Thanks, Kathryn!!), made lifelong friends, and enhanced my ability to enjoy art. But I didn't perform as I did in high school.

Within 2 years, I had broken #3. I wanted to be in the co-ed group. I auditioned and was not called back. Torture! Agony! Embarrassment! I had told everyone I was auditioning. EVERYONE. A significant public failure. A few months later, my next door neighbor, who was in the longest-lived all-female a capella group mentioned to me "You know, we're auditioning and we need altos." My thought process was that I would audition for practice.

But I walked into the teeny piano cubicle in Old Cabell Hall and met Catherine Theis, the rising Musical Director of the group. I went through the exercises for her (I believe that Erika Wicks was also present). I pitch-matched and harmonized. I sang part of my prepared solo song, only because I lost track of where I was and forgot where to go after the bridge (see above re: Torture...). But I was called back, and I fooled them into thinking I could sing quietly enough at the callback to be asked to join, and I did without a moment's hesitation.

It was the best choice of my college career. I was instantly friends with 15 other women, only 1 of whom I'd already known, and we remain friends to this day. I could write about each of them, but this one is about Catherine.

Catherine Theis and I went on to graduate together, even though she was a year behind me at school.  In addition to running an a capella group, she was an RA and a double major and she STILL finished school a year ahead of schedule. She also had a calmness and patience I could never manage to replicate, despite my desire to be calmer, more patient, and seemingly a better person. She is the best kind of person. She and I arranged a song as a good-bye gift to the group (I'll Remember by Madonna), but when we went to play the song for them at the farewell dinner, we instead played the "Sexual Healing" cover by Soul Asylum. Because we all had a joke about it, and because we could.

We called her Theis (sounds like t-i-s-e with a long "i" sound) and even though she hasn't been Theis since her wedding in 1997 we can't stop ourselves and either she likes it or she's too nice to correct us. Last Christmas, I got a message from her saying that she was going to be in town and could she stop by to see me. Of course! She did, and it was a marvelous visit. She brought  her lovely husband (who I met at said wedding in 1997) and their 3 beautiful children. We spoke about what our lives were doing, and about Connor, and all the things.

Catherine's musical abilities have always been enormous. She shared with me in December that she was writing music with a Christian group at her church, and it made me so happy that her gifts are still being shared. On Saturday, she sent me a private message via facebook that she and her colleagues had written and recorded a song, most of which was inspired by my blog postings starting with the night after Connor died. Lee and I sat on our front porch and listened to the song together. It's beautiful, and I almost wanted to comment snarkily to her that I was really glad it was written for a lower vocal range because that meant I could sing it. I needed to make it light - a lifelong part of my personality. Instead, I waited a day to be clearer, and then told her how much we loved it, and asked permission to share it with you. And maybe, just a little, show her how much it means to me.

Let's be clear - I will never, ever be able to sing this song. I know where the words come from, and they would be stuck forever behind the lump in my throat.

But I can listen to it, and know that Connor, who loved music and always danced, has brought music to the world, and that makes me so happy. You can listen now too - link is below for you.

https://www.reverbnation.com/noboundaries8/song/24228065-the-beautiful

Inclusion

So earlier this week, I posted a link to a petition from a father in New York supporting his son's right to be educated in the school near him with his friends (https://www.change.org/p/my-son-with-down-syndrome-deserves-an-education?recruiter=13055769&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=des-lg-action_alert-no_msg).  His son has Down syndrome, but the school district wants to move him to a school further away for middle school.

It got me thinking about inclusion. I wrote a little in conversations on facebook about this - how APS and the schools where Connor was a student were very, very inclusive, and the "genpop" of the school got to know, and to work with, the students in the FLS Class (which stands for Functional Life Skills).

Last night was back-to-school night, and I headed over to meet with Tucker's and Drew's teachers. Drew has a new student in his class. She speaks only Spanish, having just moved from Mexico. Drew's school, thanks to the many efforts of parents and educators, has a foreign language curriculum, and they are learning Spanish. He told me that when they have Spanish, she has English class, and that his teacher speaks Spanish so she is teaching bilingually this year. All these are wonderful things. Then last night, as I sat in Drew's chair and listened to his teacher speak, it occurred to me that she must be so incredibly lonely at school. If someone asks her to play, she can't understand them. If she wants to ask someone where the library is, they don't understand her. It has to be so hard on her little 8-year old heart. It reminded me of the feeling I had when I was first told that Connor's development would be very stunted, and he would never walk, talk or communicate. I cried for hours, thinking of my lonely little boy who would never have any friends. Then his life unfolded and I discovered how exceptionally wrong I was. He was overwhelmed with friends, and it was amazing.

So today, I asked Drew if he would work with me to learn some additional Spanish so that he can speak to her more, and she to him. We're lucky that his uncle is fluent in Spanish, and hopeful that he will be able to teach Drew (and me) some basic things he can ask her, such as:

"Do you like to play with Legos?"
"Would you sit with me at lunch?"
"What is your favorite color?"
"What is your favorite food?"

I'm thinking yes or no (si or no) or single word, easy questions (favorite color? Rojo. Favorite food? Frijoles. etc). Send me ideas. I don't know what little girls like to talk about, but I'd love for my boy to help open up this world in Arlington to her, and maybe help his classmates do the same.

Oh, and if you are so inclined, sign the petition for Aiden to go to the school where his friends are. I bet he misses them, and they miss him.

Weight Bearing

Yesterday, I was driving on Telegraph Road and saw a mother and son taking a walk. The mother was, as many parents do, videotaping him on his discovery walk. The reason, though, is more likely because he was in a gait trainer. A gait trainer is a piece of durable medical equipment (DMEs oh how I haven't missed you!) that assists the physically disabled to learn to walk more easily.   https://en.wikipedia.org/wiki/Gait_trainer.  This kid was clearly so determined. His toes dragged, but he kept pulling them forward, one after the other, pushing his foot ahead and then moving the other one. I almost pulled over or lowered my window to holler support to him.  But by the time I got home, I was so simultaneously happy and sad I could barely speak. Happy for him and his family!  Sad for missing Connor, though his gait training days were far in the past now. Connor used a gait trainer in pre-K 4/5s, with Robin in her classroom.

Some days, I bet we all wish we had a real or metaphorical gait trainer. Something that helped us stay upright and true and took some of the weight-bearing off so that we could focus on getting one foot in front of the other. So we construct them, out of our networks and our families - the structures that bear us up when we are feeling like we can't hold ourselves upright any more.

Tonight, as I read with Drew, Tucker wrote the following "story":

When I grow up I will be an inventor and create something that will bring people from heaven, especially Connor.

Then he added in that after he finished college he would create a potion that he can give the dog so that the dog can live forever.

However, for the record, he is still okay with me dying when he is 85 (and I am 121).  I imagine I will need something more than a metaphorical gait trainer by then...2094...

Going Back in Time

It's so easy to fall into a desire to want to go back, change things, make different decisions. We see the past pretty clearly though it was fraught and confusing when it was the present. Every adult knows this.  Despite knowing that you cannot go back, and that you made the best decision you could at the time, you can spend much of your life second-guessing.

I knew very early on that I wanted a family, to be a mother. I've never reconsidered that. Having had a special needs child, I still never spend a second reconsidering that childhood assertion. I just had to deal with the parental cards I was dealt.

This past weekend, I went back in time with Anne, visiting the sites and locations of the summer where we met and worked at the Utah Shakespeare Festival. The travel there was easy for me, difficult for Anne. The memories triggered by all the photographs, and then actual buildings and spaces, were hilarious and fun.

But without a doubt, the most wonderful thing about this trip, beyond the girl time together and remembering how silly we were at 20 and 21,  was the people.  In the course of the 2 days we were at the Festival over the weekend, we saw 8 people who were involved with (in leadership, performance, or creative direction) the Festival when we were young stitchers with something to prove. Though they didn't all remember us precisely, there was this unabashed kindness and enthusiasm from them welcoming us back to Cedar City and the Festival. Each conversation was more than a passing one, and allowed us to laugh and reminisce and catch up a little (or a lot) and just feel good. It triggered the best kind of memory of all - I worked here, and the people I worked with are good, kind people. Hardworking people who have made a life in the arts.

Looking back, even though I left the arts to do other things, I'm not second guessing my decision to take that job and move 2500 miles across the country for a summer to do it. It was worth every second of that summer.

And to my old friends with whom I reconnected this weekend, I'm sorry that I stopped the conversations short sometimes with my awkward, sad news. If there were anything I could go back and change, it would be that I even had to break news like that. Knowing what excellent people you are, I can only wish that you could have known Connor. I bet you would have gotten along famously.

Quick update on the little boy

So I forgot last week to stop back by the flower shop, but I did so yesterday.  I walked in and the young woman came out to the desk, offering to help me.  I said, "I don't need flowers.  I was here about 10 days ago and I think I spoke with you and your son about his tests?" Her face LIT up, and that's what it was all about.

I said, "I needed to know how the results were.  I've been thinking a lot about you guys."

And her face fell.  "No, he's still anemic.  He still has to take iron supplements." I wanted to reach across the work counter and hug her.  She looked so sad.

"Any news on the cancer?"

"No, they are planning a full blood scan soon to figure that out."

I told her how sorry I was that he still had to take iron. If you have taken iron, then you know why.  I took it during one of my pregnancies, probably the first one.

I'm glad I went back. I just wish she'd had something better to tell me.

I also need to figure out how to go back when she's NOT there, and have them give her flowers. From her expression, I feel like she needed an unexpected pick-me-up.

Busy times...quiet times

It's been a crazy few weeks, but I've had a few things stirring in the pot so here goes...

Last week, Lee took me to London for the first time. On the first night there, we had dinner with a colleague of his, and his colleague's wife.  As we enjoyed a drink in their hotel lobby, Lee said, "David's the one I told you about, whose son vanished and had an accident and died."  I nodded.  I did remember the story, and knew right away that it was going to be a different kind of night.

We headed to the hotel lobby to meet David and Michelle, and they swept me up in hugs, saying, "No, no, we hug..." when I held my American hand out to be shaken.  Cheek kisses, warm hugs, and laughing ensued.  Well, I don't cheek kiss.  Never have.  But they did.  Europeans...

In any case, the evening was wonderful - we sat on a terrace overlooking the Thames and had cocktails and then went inside to eat and saw a British actress at an adjacent table.  I placed her, putting my phone on the table with her profile for them to confirm.  "It's what I do," I said.

Of course, through the evening, our conversation turned to losing our sons, and, of course, it turned very emotional.  I did not manage a stiff upper lip, embarrassingly. But we had a chance to talk about our extremely different experiences, and our extremely similar emotional reactions. It was such a relief.  Not that we aren't honest with people, but we also know that sometimes the people we are with aren't in the right place to be hearing about our experience.

It was a fantastic night - the best of our nights in London.

Today, I stopped by the florist to order a bouquet of roses for Miss Christy, as her anniversary with us is Friday.  There was a young boy, 7 or 8, there with his mother while she worked.  I said, "Long day here, huh?" to him as she worked on my order.  He nodded.  She said, "He had a blood test today..." and proceeded to tell me that he had a medical scare last year, and is anemic, and possibly has cancer.  They retested to see how his blood was faring.  I told her I would keep them in my thoughts, and that I hope both the anemia and the potential cancer tests come back negative.  They have to wait a week to find out. After the year they've been waiting already.  I wanted to reach across the counter and hug her, like Michelle and David reached across the awkward chasm of loss to embrace me.

The waiting, my friends, is truly the hardest part.  We waited for 9 years.  David and Michelle waited 6 weeks for definitive news.  This family has waited a year to know if their son is sick or healthy.

I think I'm going to go back next week, not because I need more flowers, but because I need to know how this little boy who is just around Drew's age will be.

Dreams

Every once in a while, I would have a dream in which Connor achieved something we thought wasn't possible.  Once, about 6 years ago, it was a dream in which he stood up, ran about 10 feet, and then realized he couldn't do it and collapsed.  The expression of joy on his usually emotionless face was a sight to behold, even if it was the product of my subconscious.

Last night, I dreamt that we were getting set up for a large-scale party with the whole family around.  In the middle of the preparations, Connor was sitting in his chair, waiting to be fed, and with a group of people around, he spoke his first words.  He murmured, "Yesterday..." and we all hollered, "YESTERDAY!!" because we were so shocked that his vocalizations made a real word!  Then he said, "Tucker got in trouble." The words were slurry and difficult to pick out, unless you knew how Connor vocalized.

Next,  I went in search of my mother in the dream, as she wasn't there and she was the first person I wanted to tell this story to.  I woke up just as I was telling her in the dream.  I said, Mom, he said his first words! And we both burst into noisy, happy tears, and then I woke up with a 6 year old pressing against my side and a dog draped over my legs.

I wonder when the next dream will be, and if he will continue speaking in them.  His sentence was hilariously on topic - I'm sure that Tucker was in trouble yesterday.  Every yesterday.

In any case, it was a good dream.

Sundays

This morning, while Lee was out on his bike, I laid in bed avoiding adulting, and then I heard something. It sounded just like Connor did when he's vocalize out to us from his bedroom, sort of a "I'm up...please come get me!" indication. It's the same sound my imagination created in my head the night after he died, before I wrote the first posthumous entry here. I miss that sound, but it always makes me happy to hear it, even though it's imaginary. 

Then again, it could have been Tucker. He has been a pretty good mimic for Connor's vocalizations. But I'm pretty certain it was my mind. He was too engrossed in Turbo. 

Sundays have become the days I seem to encounter the most sadness. I wonder if it's because it's a quiet morning, which allows my mind to work overtime and entertain scenarios and memories that busy days tamp down. Maybe it's because Sunday is forever linked to faith days for me, and this experience has been the most important test, and testament, of my faith. 

Who really knows anyway? But this morning I heard his voice again. A hymn to this day. That sound used to drive me from whatever I was doing to him. Now he's always with me, so I have to listen carefully to be able to hear him. 

A new week...a new perspective

So my last post got people worried, I guess. I apologize.  I never intended that. Much like my old life, my new life throws curve balls, and sometimes they come faster and closer than I can process.

Last Friday, Connor's last school held a dedication ceremony for a tree planted for him.  My dear friend Joe donated the tree and had it planted, a Little Gem Southern Dwarf Magnolia tree.  The morning of the ceremony, the first bud opened on the tree.

His teacher, Liz, met us at the door and walked us over to the courtyard. The day was overcast, but as we stepped out, the clouds broke apart and the sun shone brightly on those gathered. The principal, Dan.  Two of his former teachers, Bianca and Rachael.  A few of his therapists. Parents and current students from the FLS class, many of whom he shared class with for 5 years.  A group of 5th graders - his technical classmates based on age. Liz stood on the small stage and read a lovely piece, talking about the team putting him on the bus the last day he went to school at the end of the day, and him looking back at each of his teachers, aides, therapists.  No one knew at the time that it was his good-bye to them. I hadn't known that he'd done that until that moment. Then she introduced the 5th graders, and referred to them as the chorus, and they stood up and sang a beautiful version of "Times Like These" by Foo Fighters.  The chorus included one of his classmates from Ashlawn, his first school. Two of his Barrett & Glebe (and Tuckahoe, come to think of it!) classmates, took rhythmic gymnastics ribbons and danced. We bawled.  BAWLED. We hadn't know what to expect, but it certainly wasn't that. Tissues were passed to us.

After they were done, Lee and I each thanked everyone, and then added a small amount of dirt from his garden at home to the roots of the tree, so he could truly be a part of the growth.

Today, I dropped the other boys at school and thought back to that event, and what struck me was that people who were there participated because they love him. Currently, actively. One of the nicest things I consider now is that despite his absence, the love we feel isn't in the past, and that is an awesome thing. We LOVE him, and it will never be that we LOVED him. It's in this moment, every moment, and like the sun coming out on his ceremony, that brightens my day.

Fatigue

Every morning, I wake up exhausted already.  It's so counterproductive.  Then today, while chatting with my former colleagues when I stopped by the old office, it dawned on me.  I'm fatigued because I have spent the past 478 days since Connor died trying my level best to be "okay."

I had no idea that this effort would be so tiring.  My body is tired.  My brain is tired.  My heart is tired.  My soul is tired.  Normally, only one of those would be tired at any given point, but I've drained myself pretty much completely dry. Why? Who am I trying to impress with my "okay-ness"?  I don't think anyone really expects me to be okay all the time but I feel this enormous pressure to be okay all the time.

And then I realize that while I may be creating that "need" to be okay, I'm acting as if it's the people around me who need me to be okay, and I'm doing it for them, and does that make me susceptible to peer pressure? Even though now that I've plotted it out in my brain, I see that it is MY own pressure, not pressure from outside, that is causing this, I still can't seem to shut it off!

How in the world do I shut it off?

I've been doing an inordinate amount of escapist reading. Every night, I read until I fall asleep and it's DRIVEL. Total crap. Anything to occupy my mind until it shuts down. I frequently wake up about 45 minutes later, remove my glasses and put my iPad down, and drift back away. Sadly, I am also frequently visited in the night my the boys, for a multitude of reasons. So I was blaming the tiredness on the late reading and perpetual interruptions of my sleep. I'm trying to stop those cycles, but I also need to address the exhaustion stemming from okayness. I'm just not certain how to get there...

Invisible Hands

I'm feeling like I losing my connection to Connor more and more.  Maybe it's that we are past a year, and the harshness of it all is dimming ever-so-slightly.  Maybe the harshness of our ragged emotional states held him closer to us, and we felt him more before all the "firsts" were in the past.

Whatever it is, I don't like it one bit.  There are times when a day is tough, or I have a particularly hard nut to crack either at home or with work, and last year I felt as though I would reach out to him through my thoughts and my achy heart, and my solutions would appear.  That's not happening now.  It's not that I don't want to work for the things I get - I absolutely work for them!  But when they go askew, it felt like I had him pushing it back in place invisibly last year, and now I don't.  And that just sucks.

Yesterday, when I opened the mail we had an invitation to a tree planting ceremony at his old elementary school.  The class made the invitations themselves - small paintings of trees, with a green swing hanging from a branch.  The goal is for a tree that will grow large enough to hang his old swing from for the FLS students who attend the school.  It's simply beautiful and perfect.  And I know I will cry continually through the planting.  But we'll take pictures and post something about it.

Wondering about all those other trees out there that were planted in Connor's honor - send me pictures if you have them!

Mother's Day

There is much ado on facebook and the like these days about Mother's Day, and those who choose not to be mothers, or cannot be mothers, or become mothers by their sheer will and courage to keep fighting.

I am none of those mothers.  I knew from a very early age that I wanted to be a mother.  I remember clearly thinking in my elementary school years about what job I would have, and when imagining that I would always have a family with me.  I believe I was born to be a mother.  I even told Lee when we were engaged that I had a timeline in place, and he needed to be okay with that timeline because I was not changing it.  We discussed, and maybe argued a little. There are many times in life when one should compromise.  In this case, he compromised.  I did not.

And therefore...I become a mother.

Now there's a child I can't hug on Mother's Day and it makes me sad.  But I've decided instead to hug anyone I see who knew him on Mother's Day.  Because if they knew him, then he is in their hearts, and if I can hug enough of them, it will make me feel him a little more, and hopefully he will feel me too.  I'll start with his Dad and brothers.  But like Lucy in Peanuts, the Doctor Is In (and I won't even charge 5 cents...)

Introducing our loss to new people ... a how-to

Over the weekend, we were talking with our new neighbors while everyone was enjoying being outside. They moved in over the winter, and then it snowed a bunch and no one was out being social. Lee held their infant son, about 8 months old, and was all melty and nuzzly and kind of glassy eyed, so I looked at him squarely and said, "Do you want another baby?" to which he emphatically said, "No." The parents in the circle joked about babies being awesome and then once mobility and communication start it's a slog to get to bedtime each day. One of the new neighbors quietly joked to us, "Third times the charm..." I don't know if anyone else noticed, but I did, and I quietly said back, "Actually, Tucker is the third time..." which most likely means that he now thinks I am an oversharer and that he didn't need to know that I lost a baby. Which wasn't my point.

I did lose a baby. In 2007 I became pregnant, but miscarried before I even made it to the doctor for my appointment to confirm the pregnancy. We knew at the emergency room that the likelihood was that this baby who had barely begun to grow must have had problems at the deepest level, which can be a cause of an early-term miscarriage. We knew what impact special needs babies and children have in families. We knew that while we had survived the first special needs child, we didn't know how we would have managed to incorporate a new set of special needs, and so we set our jaws and nodded, and explained to the perplexed staff at the ER that our reasonable reaction to the whole thing stemmed from our deep knowledge of life as a special needs family already. It was an opening salvo for Lee and I - how to cope with terribly sad things. I think we passed with flying colors. It is sad, and will always be sad.

More importantly, though, and what my new neighbors don't know, is that I lost a child. We will operate peripherally in each other's spheres, a weird Venn diagram of location only. But we love our neighborhood, and our street especially, and our neighbors on that street have been stalwart in their support, and shared our sadness with us through all of our mourning for Connor. We owe them forever for the donations, the support, the taking of our kids when we cannot or could not cope, their remembrances, their sweet and kind children who got to experience Connor and understand him. And somehow, we have to find a way to let people know without making ourselves pariahs. Because we can't live 40 or more years alienating people or making them so uncomfortable being around us that we end up isolated.  One of the greatest compliments we received as parents is how "normal" we made our abnormal lives seem with our family. Time to find how to make people think how life progressed as "normal," too.

Growing Up

Since last I wrote, Tucker has turned six.  The boys are growing up.  They ask me to tell them stories of when they were little more often than not which in and of itself is hilarious because they ARE little.

They especially love the stories of the days they were born.  On the morning of Tucker's birthday, he asked me to tell him about the day that he was born, and then Drew.  As I told the story of Drew, I told them for the first time how I lost my nerve completely on the OR table (emergency C-Sec #2!) and had to be reprimanded by my doctor for delaying delivery because I was crying too hard.  Drew looked over from the Legos he was building and said, "Why were you crying?"

"I was scared." I said.

"You were scared I was going to be like Connor."  It was sort of a question, but more of a statement.  He "got it" much earlier than we expected him to.  I told him that was correct.  I was afraid of that.  He then turned the morning around by throwing his hands in the air and yelping, "But I'm PERFECTLY NORMAL!!!!" which actually isn't entirely the truth...but that's okay too.

More importantly, he is starting to understand Lee and I better when it comes to our constantly conflicting emotions about Connor.  He managed everything with a lot of grace around the internment of Connor's cremains.  Tucker didn't fare so well.  He cried a lot in the days leading up to it, and he asked me at one point when "Connor will grow back after we plant him?"  Oh, my little buddy...I wish you could understand better.  When we stood in the garden, and held his urn in our hands for the last time, Tucker put his hand out, touched the urn, and said in a small voice, "Bye, Connor."  It got everyone.  Not a dry eye in the place.  Now he looks at the flowers and plants and talks about his brother making it beautiful.  Maybe he gets it better than all of us - for him it's still very A leads to B leads to C.  Life isn't that way, but in his young years, it is.

Anyway, it's been very busy (which is good) work-wise, so apologies for the lack of entries.  There were a few weeks where I never had a moment's rest!

Forced Perspective

It's an art term, a photography term. (http://en.wikipedia.org/wiki/Forced_perspective)

To Lee and I, it's a term of how we've lived since April 2004, when Connor was diagnosed with Infantile Spasms and we were given the prognosis of his pervasive developmental delays and shorter life expectancy.  We were forced, just after welcoming him, to start mourning him.  And despite what they told us, he lived on.  He lived 8-9 years past what they said.  So we kept living, but we also kept mourning.  We celebrated at the same time.

Last night, I stared up at a photo that is up in our bedroom of Connor sitting independently.  I remember that day so clearly.  Lee was at school, and a home had gone on the market that I thought may have worked for us.  I called my agent (who is now my broker) and asked him to show me, and would it be okay if I had the boys with me.  He carried Drew around the house while I had Connor. Connor had been working on his independent sitting with Ms. Megan.  I sat on the floor in the basement of the house at the corner of John Marshall Drive and N. 28th Street and placed him between my splayed legs, then propped his arms down with his hands, mostly fisted, on the floor.  He wobbled, then steadied, then started to look up.  Then I realized that he wasn't getting a single ounce of support from me.  I had my camera, so I could show Lee what the house looked like.

Instead, I got to take a "first" picture of our sweet fighter, sitting by himself.

I was beside myself with happiness.  Last night, I stared up at that picture and remember what a fighter he was.  It was a really good example for his brothers.  See - Connor never gave up.  He always tried.  I drive past that home at least once a week, and it always makes me smile.  It's where he walked on water.  It's where he turned the water into wine.  It's where he changed my perspective on him.  It's where I was reminded to celebrate while I mourn.

When life switches from hellos to good-byes

This weekend, I had a message from my parents that one of their very closest friends had passed away after many years of complicated health.  I stood in my bedroom and cried, feeling sad that my parents were so sad, and sad that I didn't know my "Uncle" Bob (really, my second Uncle Bob.  My first Uncle Bob was actually my uncle, and he passed away many years ago and we all miss him) better.  I knew him mostly through stories, and they were very, very funny stories.

Then on Tuesday night, I saw a facebook posting from my oldest friend, letting people know that her mother had died after a battle with cancer, and I sat in my office and wept, and thankfully had her number in my phone and was able to call her right away.  I don't know if hearing from me helped her, but I don't have memories that do not include her and her family and I wanted her to know that it moved me to know that she had experienced this loss, and to find out how her sons and father were managing.  They were there from the beginning with me.  I have so many memories of playing at her house: in the basement with the hamsters, in the backyard picking berries off the bushes and flinging them around, in the kitchen getting Cran-Grape to drink.  To this day, Cran-Apple and Cran-Grape immediately put me back in her kitchen.  Her house was the first place I heard a clock with the Big Ben Chime (https://www.youtube.com/watch?v=juT1zsim6es) which to me, was just the clock sound at Michele's.  Some days, when we were feeling very brave, we would stand on the retaining wall by her garage and jump down.  In retrospect, that was a terrible idea.  It was probably 15 feet high at the highest point.  I can't believe we never got more than a scrape!

When we were 6, we were playing in the basement, and in our exuberance decided that the best possible game would be "Jump On The Sofa" - not an uncommon game.  The difference being that this time, I opted to do so with a Tinker Toy in my mouth.  I had a real problem in my youth with "things in my mouth," though this helped cure me.  We jumped and jumped and jumped.  We bumped and bumped, and then bumped into each other, front to front.  Luckily, she was much taller than me (not difficult) and the Tinker Toy struck her right in the sternum, and poked into my cheek a little.  She ran up to her mother, a nurse, as it actually hurt her.  Her mother called me up, and asked to see my mouth.  Then she called my mother to explain and tell her I should go to the ER, just in case.  I wasn't hurt at all!  I was terrified of the ER.  When my sisters' had gone there, they came back with casts and stitched and such!  NO THANK YOU!

But away we went, and I ended up with a stitch in my cheek.  One single stitch that no one could even see.  And now, I have a small scar in my cheek that I can feel with my tongue where the stitch was that 36 years ago, came to pass because my friend's mother in her kindness, checked out the unhurt child as well as caring for her own hurt one.  It makes me glad to think I had such kindness around me when I was far too young to be able to express it, and it makes me sad to know that her specific brand of kindness is now gone to Heaven.  I know she is there, with her friends and relatives who went before, and I hope that she is with Connor too.  In a few weeks, when we inter his cremains and plant his garden, I'll plant a few seeds in her honor, and Uncle Bob's, and all our friends and family who have gone on.  

But for now, I don't like the transition we are in...moving from hellos to good-byes.  And I don't like that these good-byes are coming fast and furious upon my sons too.

Because Snow

Oops.  I've been thinking of posting something, but inevitably it has snowed and I've had the boys home, restless and easily triggered into sparring matches.  It has been a LONG month, and I don't live anywhere near Boston, where REAL snow has been happening.

In any case, it's been a month and I am really sorry.

Since my last post, Drew has decided to cut his hair short again, asking Lee to give him "The Connor" - aka a buzz cut.  Drew only remembers his brother having a buzz cut, even though his hair was longer until he turned 4.  Lee managed to buzz him without getting upset - a feat I'm not sure I could have accomplished.  His head feels like Connor's again, and I find myself rubbing it all the time.  I hope if he ever learns that one of the reasons I am doing that is that it reconnects my sense of touch to Connor, it won't bother him.  I would do it even if things were different because it feels cool, but it has the added bonus (?) of bringing Connor back to me.

Tucker has started reading.  I am thrilled, though recognize that he's 5 and it's totally normal.  But, for a kid who (1) didn't want to go to kindergarten and (2) told me that he didn't need to learn to read, I feel like this is a huge thing for him.  Now he writes notes and delivers them to everyone, and reads to himself at night after we've read together.

Lee and I still struggle with all the different emotions that whip through us.  I find that it's later in the day each day when I first think of Connor, and that makes me sad.

It's about 4 weeks until we inter his cremains.  It's supposed to be a garden-building party for our family, and I'm beginning to get concerned that we won't be ready!  Time to graph out the garden area and the seeds people sent/delivered on the anniversary weekend, and to make sure I've brought the garden bed back to life after this exceptionally cold, hard late winter we've had.

But tomorrow night, we spring forward.  Of course!  I wonder how much snow will still be on the ground when we do that.

Nailed It!

Here we are on the other side of a year.  As my friend Becky said, "Well, that's done, but it will never be over," and she is exactly right.  I am glad it's done, and I know it will never be over, and that's just how my world is.  It's up to me to ensure that the never-over part doesn't take over.

Thank you again to everyone who reached out, in myriad ways, to us over the past week, month, and even year.  I felt it all.

Now we're out of the "newly-grieved" year, which in some ways felt a little like that first year after marriage, where you are dodging all kind of questions like, "so now that you're married...?" except that we have been dodging sad looks and awkward conversations.  The fact is, you still may not know what to say to me, and I still don't know what to say back.  Say you are sorry.  I will tell you I am too.

On my morning walk with Jack, I realized that I've been in a real, honest to God quagmire about work.  It's been quiet work-wise for a while and I'm starting to lose faith.  While walking in the clear sunshine this morning, I had a little bit of an epiphany.  I really, really love being a Realtor.  I love helping people, and I love homes, and I truly believe that this is a good match for me.  But I'm so mired down in sadness I struggle on a daily basis to get moving, get motivated, and get things done.

How do I drain the swamp so I can move again?

Really, how?  I'm not sure as I'm as new to this as anyone would be. I'm going to try.  The first part will be simple.  Set some goals for each day and don't stop until they are accomplished.  Personal goals and professional goals.  Stepping stones to the bigger goals.  Get up.  Get dressed.  Clean up after breakfast.  Have a dinner plan.  Make sure you respond to clients. Make sure you talk to at least 4 people each day to see if they need any real estate help.  Make sure you get professional reading finished.

The hardest goal is this: get up.  I have been a night owl since basically the beginning of time.  Now, it's hard to go to sleep until after midnight and the mornings are still coming at me, requiring me to be pleasant and functional and motivated.  With little sleep, none of those are likely.  Mostly I manage functional right now.

I'm also going to add in one more.  Write a paragraph a day.  I woke up on January 31 with a sentence in my head that seemed like the start of something bigger.

Reminders

Lee and I have been trying to plan for this weekend.  Most everyone is afraid to even mention it to us, and that makes sense but please don't be afraid.  Life is too short to be afraid.  Speak up and say the wrong thing but acknowledge it.  It's all good as long as you do that.

I said, we have to have enough food for the family visiting at mealtimes.  He said, "Let's just make a giant puree and serve that."

I said, we'll pour a little off for our homey, and Lee broke down.  It was meant as a joke, because we had to puree all of Connor's food, but instead it fell sideways across Lee and upset him.  Even we say the wrong thing to each other.  So I said, Honey, I'm sorry.  I didn't mean to upset you.  

So as a reminder to you all out there - house is open for visits this weekend.  Bring seeds for new life if you want.  Bring a memory of him, or of our friendship, or of something really, really funny.  We all need to laugh, even in our sorrows.

Hope to see you this weekend.

The Final First is almost here...

The anniversary is nigh.  We simultaneously dread it and look forward to it.  It will make things easier when we don't have the thought "This is the first time since..." in our heads whenever we do anything.  We've gone on trips.  We've had all the birthdays.  We've made our slow and steady progress.  One of my friends told me today that we have been soldiering on, and he's right.  It's a long, difficult march with pack on our backs that is the heaviest invisible thing ever.

And since time marches on, we do too.

In a few weekends, it will be the anniversary of Connor's passing.  We've decided to proceed like this: If you want to come to see us on January 31 or February 1, please do.  We aren't planning anything formal, but our house, our hearts and our arms will be open.  There will be drinks and snacks here.  Stop by, sit with us, if you feel compelled.

Don't bring anything.  Especially lasagna.  We want to see you.  If your parents raised you to believe in the deepest fabric of your soul that you cannot show up empty handed, then please bring a seed for his garden.  In the spring, we'll refresh his garden and inter his cremains there, and we want it to be beautiful and full of love.  If you bring a seed, I promise it will get planted and cared for as best as we possibly can, and that he will be a part of that plant.  Flowers, bulbs, butterfly bushes, anything decorative.

Well, maybe if you felt like it, you could also bring doughnuts.  I mean, who doesn't love doughnuts, and we'll probably want the comfort food.  And if you are a part of my family, since the 1st is Super Bowl Sunday, if you felt inclined to bring the original, correct ingredients for Chip Mix, then we'll have something to nosh while we watch the big game.

Thanks again, everyone, for everything.

So What Now?

It's cold.  There's about five inches of powdery snow on the ground outside, and a projection that we won't break above the freezing mark until Friday at best.

It feels a LOT like last year.  I do not want to feel like last year.

We're almost a year in, and I'm beginning to wonder...what next?  What do I do next? Other than the day-to-day cleaning, feeding, caring, working normal stuff?

Some people have suggested I keep writing, and expand into a book or other creative endeavor.  In my fertile imagination, I see me at the end result, and it looks accomplished.  I mean, it looks like I have satisfied myself with an accomplishment.

The problem is...I HAVE NO IDEA HOW TO GO FROM HERE TO THERE.

None.  Zilch.  Idea-free zone here around me.

I know a lot of creative people, both in spirit and in practice.  Share your ideas with me, please, and maybe you can lay a stepping stone down that will help me get from where I am to accomplishment.