Category Archives: Installations

#56

“We want to thank all of you for coming today to such a…amazing day for Ryan and for us.” I say to the crowd through tears in my eyes, partly from the glare of the sun and partly from emotion.  This day has been in the works for a year and a half.  I have invested many hours practicing taking the “Jesus bread”, that is what we called it for him to make sure he knew it was different.  I was getting a little worried that having it a home will lessen the idea of the bread being  special but that thought had to be shooed away quickly.  My job was to make him hold it and eat it—on cue.

“It means so much to us that you would come today and share in it with us…with Ryan.  We are so proud of him…” Now I’m crying. Dan rescues me.  He puts his arm around me to either steady me or shut me up.

“Yes, thank you all for going to his communion and for coming to this celebration.” He pauses for a second, and I am scared he will break down too. But he clears his throat and goes on.  Let’s raise a glass to Ryan.” He lifts his up and the group echoes with “cheers” and “here, here’s”.

I scan the whole party area so I can put it to my memory: the smiling and the teary faces with the sunlight radiating halos behind them, laughter from the kids in the pool behind me, the warm breeze all mix in with the warmth I feel inside.  Keep it together I coax myself.

Taking in a deep breath I hug Dan and walk around to thank everyone.  The first person I arrive at is Brie.  Aside from family, she has known Ryan the longest or at least known his journey.  She has literally been with us and him since day one.  It takes all I have not to grab hold of her and sob.  Plus she is pregnant and I can see she is teetering on a breakdown as well.

“Thank you for coming.” I say and resist the bear hug and go with a simple gentle pull-in followed with a pat. “We did it.” I say more to myself.

“Yes! You did, oh my gosh, he did awesome.” She is practically gushing.  And I love it.  I love that she and all his therapists take such pride in his accomplishments.  Dr. Hunter’s group have never wavered in their support of him, even when he was having a rough day or rough spell.

“All the kids did great.  I’m so proud of all of them.  I wasn’t sure how it would go but they all did great.” I feel myself getting choked up again.  I turn and see Ryan’s other two therapist/aides walk up.  They too look like they have had a fresh cry.

“Hey girls, thanks for coming.  It really means a lot to us.” I say as I pull them each in for a quick embrace.  I can’t take all the credit for him eating the bread on cue, it was Leigh and Toni who helped me at the summer home sessions.  We would practice it at least once a day.  So I know they have a special place of pride that he “performed” at the communion.

“And thanks to you guys, he was used to the Jesus bread and took it with out a problem.” I say smiling.

“Jesus bread.  That is so great you named it that.” Brie says smiling.  I knew we had to give it a special name that meant something and I do believe it did because Ms. Sally started calling it that and so did the rest of the kids in class.

“I love that he took it and said, ‘where’s my cake’?” Toni laughs a hearty laugh.  It was a comic moment for our family.  We had promised him his cake as extra insurance if he ate the bread.

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#55

*

Watching their hair blow in the wind and their small bodies bounce with the waves, I stare at them instead of the beautiful desert mountains surrounding the lake.  I am caught up in emotion watching Ryan sit close to his best friend, William at the front of the boat.  There has never been a different answer to the question, “who is your best friend?”  Since he could answer it, it was William.  They met in pre-school and quickly showed interest in each other.  I have learned the life lesson that you can count real friends on one hand, but for someone who has trouble with social skills, even one friend is an oasis in the desert.  So, I clung like a life preserver to William and his mom, and did all I could to foster Ryan’s first and only friend.

William doesn’t suffer from autism; he has a chromosomal issue that is very rare and has caused him some developmental delays.  I honestly don’t see the delays, and I think he is the cutest thing I have ever seen, next to my own.  William is gregarious and silly and outrageously funny.  When I met his mom, Jess,  I decided instantly we were going to be friends.

Jess, and Rich have invited us to their lake house for a few days.  We have spent many evenings at their house, poolside, celebrating the boys respective birthdays or just family barbeques.  It’s tough to meet another couple and like both of them, plus meet a family who can handle Ryan’s issues—even welcome him.  And even though they don’t have the same set of issues, being under the umbrella of a family with a special needs child is comforting.   So we happily accepted the invite.

“Can I jump in, Dad?” William asks Rich as he slows down the boat.

“Sure!” Rich says with enthusiasm.  Jenna and William’s older brother, Tyler, quickly jump up to the side of the boat and leap in the gleaming water.

“Come on Ryan.” Williams turns to Ryan, who is standing back looking cautiously at the water.

“It’s okay. Watch me.” William says and leaps off the side.  Ryan watches as William comes up and laughs happily.

“Go on bud, jump in.” I say to him.  He hesitates for another second and then climbs up to the seat and bounds off.   His head doesn’t go under as he lands in the water, keeping his hair dry.

“Hey! How did you do that?” Tyler asks in amazement.  Ryan doesn’t answer him, he is swimming after William with a huge smile on his face.

“Mom, did you see that?” Tyler yells from the water.

“Yes! Wasn’t that cool? Ryan, that was awesome!” Jess says smiling.  She turns to me, “how did he do that?”

“He always does that.  I don’t know how…” I turn to watch them playing. I feel a swell of pride at something that Ryan can do that the others can’t.  “His swim coach said that is a life-saving technique she learned, to keep your eye on your victim.  It’s supposed to be really hard to do.”  I am smiling so hard, the back of my head starts to hurt.

“I think he is kicking his feet before he hits the water.” I trail off my thought as I realize I should stop gushing about Ryan’s silly “ trick”,  but the look in Jess’ eyes reminds me she knows how to appreciate all the things our kids can do.

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#54

“I don’t know how we are going to make it through the actual day without totally losing it.” My voice cracks as I turn to Lusia, one of the other moms in our CCD Class.  I am welling up with tears but fighting the full break down.  She nods and I can see she tears in her eyes, I think she is trying not to cry as well.

“Okay boys and girls, come sit on the floor.” Ms. Sally says loudly over the ruckus.  Ryan and the other six children are running amuck in the classroom.  This is usually the way the Special Ed CCD class starts, a game of chase around the room.  Ryan loves this part the best.

These kids have been together for over a year and actually like each other.  As much as Ryan usually puts a verbal barrage not to come, once he’s here he will join in for most of the class.  Ms. Sally has done such a great job with this class.  Each week, I am always surprised what she pulls off.

When she first brought us all together and told us her plan, I remember being cautiously optimistic at what seemed like a truly ambitious plan:

“We will meet every other week, and continue through the summer. It’s not the usual way of CCD but I think it’s important they have continuity and plus we have more ground to cover. Everyone okay with that?” She looks at each of us crammed around the table.

“So, they are…allowed…to take the communion?”  I asked and immediately felt bad for sounding like someone who did not understand what it’s like to have a child with special needs.  In my meager defense, I assumed Ryan would be much older by the time he was able to understand how sacred receiving the bread is.  No one seemed bothered by my question as I look around a little red-faced.   A few are nodding and looking intently at Ms. Sally for an answer.

“The Church’s stance is as long as they are able to understand the bread is not regular food, they can receive Holy Communion.  So when we feel they are able to understand that we can make a decision when the service will be.” She looks around us all again. “Sound good?”

There is a cacophony of nods and happy sounding “yes’” in agreement.  I am nodding like a bobble head.  I truly did not believe this would happen.

“Ryan, Ms. Sue said to sit down.” I say as I walk towards him.  He is running ahead of the children with a huge smile on his face.  I hate to break it up, but we have let them get a little over stimulated.  “Let’s go, stop running and sit down.” Miraculously a few children listen and come sit in front of her wheely chair.  This takes away Ryan’s fun of being the leader, so he reluctantly follows.

“Okay let’s start with the sign of the cross.” Ms. Sally says after they all are seated.

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#53

*

“Horse! Horse! Wook , Mommy, Horse!” Ryan yells from the back seat. His face pushed up close to the window…hands spread wide.  We pass a few stalls of horses on the long drive.  I’m thrilled he’s excited because it’s not often he gets this passionate about something.  But sometimes even with the picture schedule; I don’t think he really gets what I tell (and show) him we will be doing.  I made a new piece for his schedule with picture of him on a horse and next to it the words: “ride a horse”.   Per Dr. Hunter’s group, I now make his schedule with pictures and words, so when he gets better at reading we can take off the pictures.  I love the idea of him actually reading a schedule.  I am a calendar freak, always have been, so I appreciate making his daily schedule.  I have to do it for myself.  And I know how much it keeps him organized and knowing what to expect.

“Yes, bud, I know.  You are going to ride a horse today.” I say for the fourth of fifth time today, as I pull in to the dirt parking lot.  I think we are still a way from just words on his schedule or words to remind him.  No mater, he’s happy to be here right now and I am too.

This isn’t just horse lessons, its ‘therapeutic riding’.  I thought we should try it as he loves horses and maybe we can find something he can be involved in.  Therapeutic riding isn’t a new concept, and I had looked into when he was first diagnosed, but most of the places weren’t close by.  When I was looking to have a horse riding birthday party a few months ago for Ryan, the Riding  House Therapy Group came up in my internet search.  They didn’t do parties, but I liked that they were nearby.  When we saw how much he enjoyed his birthday, I decided to give it a try.   I liked that they served all disabilities as well as autism.

He opens his door and starts to jump out before I can turn the engine off.

“Hold on Ry, you have to wait for me.” I practically scream.  I quickly pull the keys out and swing wide my door to block him.  I grab his arm and then reach in for my purse as he is struggling to get away from me.  He is straining his neck around the door to see the riding ring with a horse, rider and three assistants.  Wow three people to one rider.  That seemed like a lot, but I can see the rider has a physical handicap.  I’m pretty sure, it’s for safety.

I grab his hand and walk down the gravel way to the small area with picnic tables and cabinets.  We are spotted by a lady in a straw hat.  She smiles broadly at us.

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#52

“Like what you see?” Ms. Abrahms asks from the doorway of her classroom.

I don’t know how long she’s been standing there, but I know I have a goofy grin on my face that I know she could see even in profile. I jump a little at her the sound of her voice and answer enthusiastically.

“Yes! Yes, I do.”

Ms. Abrahms has proven to be not just an outstanding teacher, but an amazing person.   I heard through the rumor mill, she actually asked to be his teacher when the principal told the staff he was coming aboard.  She later told me she has a friend who’s son is autistic.  And she really wanted to learn about autism.  Sometimes “fate” doesn’t explain when things like that happen.  I know there is a higher hand involved, simply guiding us to the right people at the right time.

“Good, good…”  She returns my smile and walks to her desk.  She doesn’t seem bothered that I am here unattended. I took advantage of an open door and let myself in to snoop before our team meeting today.

“I hope you don’t mind, I came in early…I love seeing his work.” I say sheepishly at being caught, but also beaming with pride.   She waves her hand in dismissal.

“Help yourself; this room is always open to you.” She begins gathering papers on her desk and I continue around the room.

I only give her a nod as I have my arms wrapped tightly around myself;  Either to hold in my joy or to keep me from snatching his work off the wall and sobbing.   I can always pick out his papers as his writing is messy and his pictures not as advanced as the other children’s.  However, there are a few pictures and writing samples that I notice are similar to his.  I don’t care either way.  I am simply overjoyed at the fact he even has work on the walls; that he is participating and getting the opportunity to learn.

One by one, the rest of our team assembles.  Brie, Toni, Leigh, and then Dan.

“Hello ladies, nice seeing me again.” He says with his charming grin.  They all roll their eyes and giggle politely as they all are too familiar with his lame jokes.  I too, smile at him as we all take a place around the semi-circular table.

I am floating with bliss at the reports of his success: with conversations with peers, with reading, with using the bathroom alone (a feat he could not do at public school-somehow he would hold his bladder: All Day).  I’m also amazed at his interaction with Ms. Abrahms.  She often asks to work with him alone and actually was able to access him with his academic progress.  Something the public school district staff had difficulty doing.  And she did it in a few short weeks.

“He’s not the top of the class and he’s surely not the bottom.  He’s right in the middle.” Ms. Abrahms says matter of factly and then gives a broad smile.  I can tell that she’s proud, and already invested in him…and I want to hug her across the table.

Right in the middle, right in the middle…I keep chanting it in my head.  Who would have thought how beautiful the equivalent of “average” could sound?

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#51

I must have a defeated look on my face as Miss Sally pulls up next to me.

“How’s it going? You guys okay back here?”  Miss Sally asks me.

“Oh, we are fine.” I say unconvincingly.

She smiles at me. “Really?

After the twenty-five minutes of chasing Ryan I am truly worn out.  Not just physically, but emotionally.  I don’t know how I can keep this up.  It really is pointless.  He gets absolutely nothing out of each class.   I was going to speak with her at the end of the year, but decide I could lay it on her now.

“Mrs. Sally, this is…Ryan has such a hard time…the class is just not made for his…” I stumble trying to figure out how to tell her nicely that it isn’t worth anyone’s time him coming to this class.

“I know what you are trying to say.” She says with a sweet smile on her face.  She always looks like she has a secret.

I feel the guilt rising up in my throat as I gain the courage to tell her we just aren’t going to come back next year.  I have been researching special needs catechism and did not come up with much.  But Dan and I decided after a long evening of me venting after class that maybe he just isn’t ready and we wait until he’s older.

“Mrs. Sally, I think it best Ryan not attend–“

“–I know what you are going to say.” She interrupts me.  “But, I’m going to ask you a favor.” She stops her wheely chair and turns it to look at me so I stop.  This seems serious.  Ryan is walking ahead of us with the other children so I keep one eye on him.

“Be patient.” She says simply.

That’s the favor? Be patient.  Does she not know that every part of my day involves more patience than I ever knew I had?  My whole existence is commanded to be patient with him.  Right now I feel Luke being spoken to by Yoda.   “Do or not do, there is no try”… doesn’t she know the painstaking ends I go to have patience?  I can only imagine the look on my face because she smiles even broader.

“I’m working on something…something really great, to fit the needs of kids like Ryan at our church.  I’ve got a group who need their own class.  I just need more time to get it organized.”

Oh! She doesn’t mean to be patient with him, she means with her.

“Oh, okay.” I say happily, realizing my blunder.

“I will get you some information over the summer.”  She starts to turn her chair to indicate the conversation is over, and stops again. “Don’t give up on us okay?” She doesn’t wait for my answer only wheels away.

 

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#50

 

*

The building where ‘church school’ is held is a short distance across a parking lot from the main church.  We walk over as a class. I stay toward the back to make sure the class is all together.  Ryan is holding my hand and grasping Thomas closely in his other.  He is being good so far, but I have trepidation on how he will do inside the church.  He hasn’t spent much time in there as we usually go to the “crying room” during mass.  It’s just easier for us and the fellow parishioners.  I look at him clutching Thomas and silently chastise myself  for letting him have it before class.  But I had to get him here, I argue with my inner behavioralist.   I have to find some stronger reinforcers. It amazes me how much the therapists have invaded the very way I think.  Checking my watch, in hopes it took half the class time to get over here, I am disappointed that it’s only been seven minutes.  Crap. It’s going to be a long night…again.

We arrive at the church and Miss Sally, the head of Religious Education at our church is sitting in her mobility scooter, waiting for us.  She welcomes us with her usual cheer and all the kids are looking at her.  Her scooter is fascinating to all the kids, even Ryan.  She is very conscious of keeping it turned off while speaking to the kids as inevitably some child,most likely mine, will hit the gas and run over who ever is in front of her.  I am not sure why she is in the mobility scooter and don’t have the heart to ask.

“Hello boys and girls! You all ready to learn some interesting things tonight?”  She says in her kid-friendly voice.

There are a few ‘yes’ and ‘no’s’ said softly.  She ignores the ‘no’s’ and starts to explain the rules.  Already Ryan is off touching the stain glass windows.  I walk over to him to start guiding him back to the class.

“We will each get the holy water, do you all know how to do that?” She asks.  Just then Ryan spots the fount and decides he will demonstrate.  Apparently his Thomas train needed the blessing, because it goes in the water.  All the way in.  I think I’m going to swallow my tongue I’m so appalled.  The children see this behind Mrs. Sally’s back and begin to laugh.  I know better than to scream at him and lunge toward him quickly.  I pull out his arm that is now soaked halfway up the sleeve.  Even Mrs. Sally thinks this is slightly funny, but she tries to disguise her smile.

“Thomas all wet.” Ryan says holding up his dripping hand towards me.  His beautiful almond shaped eyes are showing his delight in giving Thomas a bath.

“Yes, he is.” I whisper, wanting to crawl under the nearby table.

“Okay, Ryan, thanks for showing us how! And, to you too, Thomas for being a good assistant.” She laughs. “Mrs. Amy, you want to line them up so they each get a turn.” Mrs. Sally turns and winks at me.  I mouth “sorry” and she waves her hand in dismissal.  She wheels away quickly to the entrance of the sanctuary.  My heart is pounding and I’m beginning to sweat.

“Please God, help me get through this without any other sacrileges.” I say under my breath.  Maybe being in His house will make that prayer more powerful.

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#49

“Mommy, are you coming, it’s getting hot in the car?” Jenna is peering in from the front door with her sweet angel face.  I sigh and shrug my shoulders.  I sit down on the steps and try to conjure what would make him want to go to a place where he isn’t interested in the topic, he doesn’t like the singing, and has asked the class to “please stop singing”, and doesn’t have any real friends there.  At least at elementary school he has all the little girls who try to help him.  Here they look at him like he’s from another country.  One snide boy actually asked me what was wrong with him.  At seven years old, he cut me to the core.

I hear Jenna sigh as she comes in and sits down next to me mimicking my posture of defeat.  We sit for a second in silence.

“Mommy, why doesn’t Ry Ry like church? She asks innocently.

I think for a long minute.  I usually try to answer her questions with a hint of intelligence and forethought.  She’s hasn’t asked too many questions about him in her life.  I chalk that up to blind tolerance of a sibling.  You are kind of stuck with them so why ask why…

“Well, honey, his CCD, uh Church School class is not…very…uh…fun for him.” Nice job with the forethought.

“Mine is. We have so much fun.” She says earnestly.  I look into her light blue, anxious eyes.  I know she means it.  She does love being in almost any social situation.  She delighted in preschool, and any mommy and me class I took her to. It’s completely opposite with Ryan.

“I know, honey…but church makes sense to you-right?” I ask hoping to really start a meaningful dialogue. She turns her head like a dog would when they hear something funny. “I mean, you go there and see your friends, you color and then they teach you something about Jesus-right?” She nods at this. And I try to slow down speaking so I can say the right thing.

“Well, to Ryan its loud and he doesn’t like to color.  And to him learning about Jesus doesn’t mean much.  You can understand that Jesus is Gods son.  But that’s hard to explain to him…does that make sense?” I implore.

She shrugs her shoulders and says honestly. “I guess.”

I don’t think it really does make sense to her, but we need to get going and I have to accept that was enough of a “learning minute” for now. I hear Ryan upstairs and try again.

“Ry, come down, please.” I say up the stairs.  “I have Thomas here and he wants you to come with us.”

I hear him slide along the wall a little and peek out the landing.  “Thomas?” he says with a question in his voice.

“Yes!” I say in most excited voice.  “Let’s go! He wants to see your friends at church.” I smile like an idiot at him nodding my head. The ‘assumptive close’ we called that in sales.  He keeps peering down at me like he wants to come and begins to lightly kick his foot on the banister.

“We’ll go to McDonalds after…okay?” I say, trying not to sound like I’m begging.

He doesn’t answer but he starts to walk slowly down the stairs.  Good enough for me! I grab Jenna’s hand and walk to the door to keep him moving that way.  I hand him Thomas and we walk out.  I’m already tired and we haven’t even gotten there yet.

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#48

*

“Let’s go guys. It’s time for Church School.” I yell up the stairs as I stuff my binder for into my bag.

“Noooo…I dunt wan go!” Ryan yells out from his room.

Jenna skips out of her room down the hall with a big smile.  She has always liked going to Church.  I am often amazed at how good she is—good to her core.

“Okay mommy, I’m ready for church.” She smiles at me and I smile back briefly.

“Okay, go wait by the car we will be there soon.” I turn back to the stairs and try again.  “Please Ryan, it’s time to go.  I have your m’s…” Silence.   “If you are good, we will go to McDonalds after church school.” I say in my best encouraging voice.

“Noooo!” He yells again.  I sigh and try to think of another tactic.

‘Church school’ is a simple name we created for Ryan rather than calling it CCD: letters that don’t really mean anything.  I had to look it up when Dan couldn’t remember what it stood for: Catholic Catechist Discernment.  Which is just a fancy way of saying: learning about being a catholic and then deciding to be one.

I check my bag of tricks to make sure it’s all ready.  I have made a portable schedule and taken pictures of every part of the church, and the teacher.  I have m & m’s, oreos, a train, a ball, and a slinky.  I have been trying to modify the typical first year catholic program for him.  It’s not been easy trying to make it systematic and fun at the same time.  All the activities involve things he could care less about, coloring, cutting, gluing and then there’s the God thing.  Explaining God to an autistic kid is tough, heck explaining to an adult is just as hard.

We started the year okay, but have gotten progressively worse.   He now realizes there is no actual gain for him.  Autistic children are very driven by what makes them happy, and this doesn’t make him happy, therefore he doesn’t want any part of it.  The picture schedule doesn’t help as much as it should, my bribes no longer work, and earning stickers for candy isn’t working either.   I dread Wednesday’s now because I know how draining it is.  I end up chasing him almost the whole class and by the end of the hour and half…one of us is screaming or crying, or both.

This is an area I don’t want Dr. Hunter’s group to help with.  I have some sense of pride that I can do this.  I took the class to be a CCD teacher and I’m going to do it.  But, I realize more and more I’m not really a teacher.  The other kids are great and I try to help “teach” the class, but Ryan is what takes all my attention.   I feel bad for Amy, the real teacher.  She is actually a teacher by trade so this comes second hand to her.  I think she thought she was going to get some help with me this year.  Boy did she place her bets wrong.

I spend so much time explaining to 8 year-olds things about Ryan they don’t really care to know but I think helps.

“He likes to hide under tables, isn’t he silly?”  I say in a funny voice to one of the girls who is kneeling down looking at Ryan with a puzzled look on her face.

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#47

I know they won’t approve it, and in my mind our journey with the school district has ended.  I feel bittersweet.  I don’t want to separate my kids now that I have had them at the same place; I don’t want two school schedules, two drop off times, two pickup times, two different holiday breaks.

But I also can’t bear to have Ryan go through another school year with doubts about the aide and their training  even though we write in the IEP the aide must have training, we know it us just semantics “training” can be a one-day seminar to them.

I am relieved to be free of the monthly meetings that accomplish nothing.  We openly discuss his issues, shortcomings and offer behavior plans that are never looked at.  When we go back to the next meeting nothing has been done to “fix” his issues.  Whatever progress he’s made has happened at home with us and Dr. Hunter’s therapists.

I am glad to be free of the fear they could change his aide at any moment.  The language is clear in the IEP they have the right to change.  And they have.  It was like a revolving door for a period of two weeks.  The aide assigned to us had some personal family issues.  And instead of putting herself out for two weeks, she called in everyday, leaving the district little room to provide the same aide.  It wasn’t their fault and I did sort of feel badly for them scrambling each day.  But I did not appreciate the repercussions it had on Ryan.  It was the beginning of his downward spiral.  A beginning to what made us consider ending his career at public school.

The clincher for me was after the Thanksgiving break.  I put their backpacks in the closet as usual for the weekend.  And as it was a long weekend it was in there awhile.  I hadn’t realized how visually significant that was to Ryan.  When I got the backpacks out on Sunday he started to cry.  And in his “broken” verbiage he pleaded to me.

“No school…no school. Backpack in closet. Backpack in closet.” He wailed.

In his short life, he had never tried to persuade me so vehemently with words.  There were many times he used his fists or legs to show disproval, but this was really communicating with me.  I felt my heart rip in two at the dichotomy of this: my baby was conveying his feelings so well! My baby is begging me to not take him to school…

“Well, that’s it. What do you think?” Dan says bringing me out of my thoughts. He leans back in the chair and stretches his arms over his head.

I sit silent still rummaging through my thoughts.  I don’t have the energy to sum up all I’ve been thinking so I just shrug and think for a few seconds.

“I guess it’s what I expected.  Just glad it’s out there.  It feels like we’ve been lying to them or something.” I confess to him.

“Yup, we put them on notice and now we just go forward with what we planned.” Dan nods as if confirming his own words.  Then he stands up. Well, I gotta get going.  I’ll see you later.” He leans down and kisses me and walks out.

Yes, what we planned.  We. What WE want…yes, it feels good to be back in control.  I smile a broad smile with satisfaction.

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