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...