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.