There is Blessing Here

When people who are sitting directly in front of us at church resist the temptation to turn around and stare at us, we notice.   Alexa keeps up a steady stream of excited sounds when she’s in church and we’ve grown used to people turning around to see who is making all that racket.  When they don’t, it’s a pleasant surprise.

For a few months now, I’ve been noticing a group of young people from Korea who tend to sit around us in the sanctuary.  Apparently they like to sit towards the back also. I’ve watched their heads and marveled at how they just keep staring straight ahead no matter what kind of noise is coming from behind.

This was never so obvious as on Christmas Eve.  Alexa stayed in for the whole service.  She was terribly excited and altered between loudly exclaiming, “Merry Christmas!” and “Santa Claus!”  I had to remind myself that keeping quiet when she is excited is almost physically impossible for Alexa to do.  I tried telling her, “That’s too loud!  Whisper!” and she did try but it came out more like a dramatic stage whisper, “That’s too loud!  That’s too loud!  Whisper!!!”

Out of desperation, I came up with a little ditty, “Let’s practice being quiet – that means making no noise.”  As I spoke the words slowly into her ear, she turned to look at me with dancing eyes, bobbing her head to the rhythm of my new little song.  It was working so I repeated it a few more times.  She seemed enthralled.  I stopped.  She exclaimed, “Merry Christmas!  Santa Claus!”

At the end of the sermon I touched one of the people from Korea on the shoulder.  “God has a special blessing for people who put up with sitting in front of my noisy daughter, you know,” I said and they smiled sweetly. I thought, “No, I really think he does.”

Intrigued about their polite behavior, I stopped one of the women as she was leaving and asked about the group.  She explained that they are mostly students and that they live in community here.  I asked if it would be appropriate for them to come to our house for dinner sometime.  She got a concerned look on her face, “You mean all of us?” “Well, yes!” I replied.  “But there are 20!”  “I think we could handle that,” I told her.  “I would just really like to hear your story.”  She smiled and softly said, “We’d like to hear your story too.”

All I knew was that her name was Claire.  For the next few Sundays I looked for Claire but couldn’t find her.  I gave two different Korean guys my name and number and asked for them to have her call.  Each time, I told them we wanted to have them over for dinner.  Each time, they got a horrified look on their face and said, “But we have 20 people!”  “Well, I’m getting a little bit afraid, the more you point that out, but I really think we can handle it.”

Finally Claire and I connected.  So on this past Sunday after church, smack in between two snow storms, 20 beautiful people trudged through our garage and up our basement stairs.  (Because huge snow drifts covered all other entrances, it was the only way into our house.)

They came in and spread out, curiously exploring every room.  “This house looks like an advertisement for Pottery Barn!” one of them exclaimed.  Another commented, “Oh look! There is a fire in the place!”  One person carried in a huge tin of giant baked potatoes.  Another brought in a second batch.  One person had cookies, one chips.  Claire came up with a large bouquet of beautiful flowers in her hand.  Many, many times we heard, “Thanks for having us!”

Somehow we got everyone together in the dining room.  In keeping with our family’s tradition we held hands and sang the Doxology.

“Praise God, from whom all blessings flow
Praise Him, all creatures here below
Praise Him above, ye heavenly host
Praise Father, Son, and Holy Ghost.
Amen.”

After we started eating, Greg Pak and his wife Susan arrived with their two small children.  Greg has been the interim preacher at our church – we’re big fans of his – and he had to preach that morning so they were late.  They, like the others, began to pour out their appreciation to us for having them.

After repeatedly hearing that Steve made the best chicken chili and that I made the best chocolate chip cookies, we began to feel like we were floating on air right inside our little home, we were so uplifted.  Claire took me aside and told me that the way my eyes look when I am with Alexa touches her heart as a mother.  The kids were in awe of Steve and what he had done to the house.

Later everyone found a seat in the living room.  At Claire’s suggestion we went around and introduced ourselves.  The supporting adults were a well-educated, impressive group, the kids utterly charming.  One girl shyly told us that tomorrow was her birthday.  We loudly sang her the birthday song.  We asked each other questions and laughed at honest answers.  They wanted to know more about Alexa – that what she has is autism and that her special talent is twirling sticks.  We wanted to know more about them – that they do like snow because of snow days and that there is a 13 hour time difference between here and Korea.

We learned that Claire and her husband (who was in China that week) had started the organization, BNM – Building the Next Millennium.  Kids from Korea come to get a more balanced education – not just the strict academic focus which is the norm in their country.  Many of them were involved in sports and art.  They all go home during the summer months but return for the school year.

It isn’t easy but it is rewarding work.  BNM wants to be more than just another Christian organization.  They want to build something that lasts, that has a positive influence for generations to come.

I noticed that Alexa was looking tired and she was starting to make manic noises.  “Could we sing a song together?” I asked.  “Alexa would really love that.”

Greg sat down and started playing a song we didn’t know.  Suddenly they all began singing in Korean and as they sang, each person held out both of their hands towards us.  As we looked around the room trying to take it all in, Claire slipped out of her chair and came over to where the three of us were sitting.  She started whispering the words of the song, “Everyone is born to be a blessing, everyone is born to be loved, this is our blessing to you.”  Tears trickled down my face.

We hugged and made promises to continue our new-found friendships.  They put their coats on and trampled back down the stairs to the waiting pile of boots.  Greg hung back for a moment.  “You know,” he said to Steve and me, “there is a Biblical principle at work here.  Where there is suffering, God promises to at least match that amount of suffering with blessing.  There is great blessing here.”

I was surprised that I felt relief when Greg used the word, “suffering.”  He said it as a matter of fact and it is.  Just look into Alexa’s face when she is anxious and confused.  Yes, there is suffering here.

You would expect the result of suffering to be constriction, the closing off of the human spirit.  But I’ve learned that suffering can do the opposite – it can have the effect of opening and expansion.  I’ve tried to understand why that is.

Just looking at our little family, I see that where there is suffering, there is also need.  People who have need in their lives have to stay open for divine or any other kind of help to come.  Any words of encouragement or acts of support, any sharing of the things that truly matter in this life.  We need wide pathways for love and compassion to travel on.

A long time ago, we asked a young couple with two children who were new in town to come for dinner.  Years later, the woman told me with tears in her eyes it was something she will never forget.  I asked her why and she told me, “Please don’t take this the wrong way Ali, but you had every reason not to invite us.  Still, you were the very first ones who did.”

Without realizing it, we had already learned what Greg pointed out before he left.  Where there is suffering, God at least matches it with blessing.  And all we can do with blessing is let it flow.

Under Construction

My brother Mark is a great storyteller.  I could listen to him telling stories until the cows come home.  I say that because Mark and Vera live in Indiana and recently bought a farm.

The other night he called.  “You won’t believe the meeting I just went to!”  I settled myself into a cozy chair.

I’m not really clear on how Mark got invited to this meeting in the first place. He was talking to his friend, an Amish farmer, and the conversation turned towards goat’s milk and cheese, and before you know it, he was invited to an important meeting about goats that very night.

So Mark picked up his friend and they drove to a house where another Amish farmer lived, and before you know it, there were twenty other Amish farmers in the room.

When Mark tells a story, he fills it up with small but important details.  Like, at first he didn’t shake the women’s hands because he thought that was proper etiquette, but then after watching the other men shake their hands he went back and shook the women’s hands after all.

There he was, the only “English” person among all these Amish farmers at a meeting with the one stipulation of being interested in goats.  At first the farmer who had invited Mark wondered if he had misstepped by inviting this non-Amish man who did not actually own any goats to the evening’s event, but it became clear that he was being well-received.

According to Mark, the host had a voice as deep as James Earl Jones and with his low rumbling voice he told the group he had just been to the hardware store.  While he was there, the conversation turned towards goats.  They were talking about a company who makes machinery for the goat business, and this man asked if they could look the company up on the store’s computer since Amish people don’t have computers in their homes.

“Now Mark,” the James-Earl-Jones voice boomed out, “I’m not sure but I think it is really bad when you look up something on the computer and it says,’Under Construction.’ What do you think Mark?  That’s bad isn’t it – is that really bad?”

“Well,” Mark answered, trying to choose his words carefully.  “I wouldn’t say that it’s really bad when a website says ‘Under Construction’ but it does sort of make you go ‘hmmmm.’”

“Oh I like that Mark!” the host thundered and putting one finger on the side of his face tried it out for himself, “Hmmmm.”

Before the night was over they were planning a road trip to Iowa with my brother driving a large rented van.

 

*************

 

I feel like my life, in some literal and figurative ways, has been under construction lately.  Like I’ve been spending a lot of time just looking around, going “hmmmm.”

I think after you go through a death of someone dear, it takes a while to choose to be among the living again.  Every day I get up and part of me looks back, missing my mom.  The other part of me tries to look forward.  It is this part that struggles, but I think it’s normal that it’s hard.  I’m told that I really will feel better after time.

The path to healing and the secret of knowing where to look is something I am learning from Alexa.  I’ve always said she’s my most profound teacher.

It is 6:59 pm, her shower is done and she and I are sitting on the sofa.  She’s got her PJs on.  I hear her say “Goodnight Brian” to the anchor of NBC News.  She points to the remote control and tells me “Wheel of Fortune”, and I turn the channel from 7 to 4.  I reach over to get a blanket so that we can get warm and snuggle together.  When Alexa sees the blanket she throws her legs up over mine and leans back against the pillows.  I put the blanket over both of us.  Our heads draw together and she looks into my eyes.

I have learned to hold this look until her eyes break away which is after quite a long time usually.  I see both her eyes dance from one of my pupils to the other and then back to the first one again.  She is grinning and makes a laughing kind of sound.  There are no words being said between us because our eyes are saying everything.  “Joy, joy, joy,” say her eyes.  “Love, love, love,” answers mine.

Somewhere in the deepest part of my being, someone whispers, “Just look at now.”  These are good days – perhaps even the best – because we are together.  Maybe it’s not about looking backwards or forwards but learning to just look at now.

My Girls

On Sunday morning Steve told me, “Your girls are up to something.  I think you and Alexa should wear something nice.”  By “my girls” he meant “The Alexa Team” at church – Suzanne, Marnie and Johanna.  When we started attending Free Christian Church I called Kathy, the Children’s Minister.  “Do you have a program for children with Special Needs?” I asked.  Years later I would find out the truth – that they did not have such a program but she thought they should and so her answer to me that day was “yes” anyway.

“The Alexa Team” was created.  Kathy called Johanna who is the mother of three typical daughters.  What Kathy didn’t know was that Johanna had studied Special Ed.  So, Johanna was the first to come on board over ten years ago.  Then she and I met Suzanne at book club one night and Suzanne asked if a person needed to know anything about Special Ed to volunteer. “No, not necessarily…” I ventured, knowing Suzanne’s spunk and spirit would be a good match for Alexa.  So, Suzanne came next and she has also been deeply committed to our family during these past eight years.  Then Marnie joined the crew.  She is Alexa’s primary care doctor.  The qualifications don’t get much better than that.

Alexa stays in the sanctuary for the music and then one of these women take her out during the sermon.  They read to her, listen to music and give her snacks which have been stuffed into their purses.  Sometimes they come back in for communion or for the closing song.

This Sunday after the music was finished, at the time when someone would normally be taking Alexa out, Johanna appeared behind us with a big plant in her arms.  She sat down in our row next to Marnie and Suzanne.  “What’s happening?  What’s happening?” I asked nervously.

The pastor spoke.  “Ali Watt, we need you to come down to the front – right down here – and your friends will be coming down with you.”

When the pastor says something outrageous like that, the named person has two choices – either cooperate and start walking towards the front or run like heck out the back door.  Believe me, I briefly considered both before following his directions.

Well, the whole thing was mortifyingly embarrassing and I didn’t deserve it at all, the way Suzanne and Marnie went on about the kind of mother I am while Johanna stood next to me, holding the heavy hydrangea.  All I could do was shake my head.  “Make it stop.  Make it stop!”  I was silently pleading.

I’ll tell you what did feel natural though and somehow very right – when they started talking about Alexa.  “Alexa is a bright star in our lives.  She is the most authentic person we know.  She is honest with her feelings.  She exemplifies Matthew 5:37 – “let what you say be simply ‘Yes’ or ‘No.’ “

As she was saying these words I looked up and saw Steve sitting in our usual back corner with Alexa standing next to him.  Even from the front I could see that she was beaming.  It did feel right in that moment for me to be standing arm and arm with these strong, God-loving women.  “You’ve got us all, Alexa,”  I thought.  “We are all on your team.”

Suzanne ended by saying that the plant was given to me in honor of my mother.  There was a new wooden stick for Alexa to twirl which was signed by many of our friends in honor of her turning twenty-two.  There was even a little wooden truck for Steve that said “Take a Ride,” Alexa’s most frequent request.  Attached to the bottom of the truck was a gas card.

Suzanne knew this Mother’s Day would be hard for me – the first since my mom died – so this is what she decided to do about it.  Wrap our family up in love, wrap me up and tell me I am a good mother.

Which is exactly why I think maybe – just maybe, my mom was also involved with this ridiculous scene at church.  I remember talking to her on the phone between my frantic trips to Michigan last November.  “It’s just that you are the BEST mother!” I wailed, unable to contain my grief.  Her voice suddenly became clear and strong. “No,” she insisted, “you are.”

This is the phrase I want to give to Suzanne, Marnie and Johanna.  This is the praise I want to sing for all the amazing women in my life.  This is the encouragement which echo’s all the way from heaven, I am sure.

“No, you are.”

You are.

We Are Blessed

 

We are blessed!

Be A Blessing

When Alexa gets out of the van in the afternoons, she happily walks with me into the house and says, “Then, take a ride.”  Whatever she decides to do first – have a snack or watch some youtube, she wants me to know that next we will be taking a ride, no negotiations.

I often drive with her to the beach and then make a big loop back to our town.  I know she likes this route because she says, “This way,” when we’re facing the beach and it’s time to turn.

On Monday, we were making our way back towards Amesbury when we stopped at a traffic light.  There was one car in front of us with two people in it, a boy and girl.  The boy was driving.   The girl had a short, blond ponytail.  I watched, transfixed, as the boy stopped the car and their two heads met in the middle for what turned out to be a lengthy and involved kiss.

I wondered how long I would have to wait behind these two lovebirds, but when the light turned green they broke apart and drove on.  Just as I was putting my foot on the gas pedal I heard Alexa say from the backseat, “Kiss the girl.”

I didn’t think she had seen the kiss, but obviously we both had been staring at the couple.  I laughed out loud.  What a perfect place to put that line from a song in “The Little Mermaid” movie.  “Come on and kiss the girl!”

I wanted to know so badly what she thought of that kiss, but the idea of her seeing it sort of pained me.  Those kids looked to be about her age.  Because of her autism, there is so much of life that she misses out on.  Usually we can go our own way in ignorant bliss, but sometimes there life is – staring you in the face when you’re stuck behind a car at a traffic light.

****************

I am grieving for my mom.  I miss her so much.  Those days spent with her in hospice haunt me.  Not “haunt” in a bad, scary way but in a tender, hurting way.  The gentle throbbing of a wounded heart.

Her absence seems so large.  When my dad died suddenly 16 months ago, it felt like he hung around for a little bit.  We felt a whisper of his presence for a while.  My mom, on the other hand, worked hard to get to heaven.  I remember watching her trying to focus her eyes as she reached her arm straight up, lifting her body only to fall back on the pillows.  “I can’t reach it,” she weakly said.  When she finally made it there, I think she never looked back.  I think she ran right in and kept on running as far as she could go.  That is why I don’t feel her around me.

My brothers and sisters and I decided to put a basket out at her Memorial Service filled with stamped, colorful cards.  My sister made a sign that said, “Be a Blessing.”  We wanted people to take a card and send it to someone like my mom had done so often – to encourage, to uplift, to be a blessing to someone else.

****************

Life does not pause for the grieving.  I am sitting here with mounds of paperwork because Alexa will be turning 22 on April 2nd.  This is a big birthday because it signifies a move out of the educational system and into the adult system of services.  It calls for a celebration, but I’m not sure I am up to having a big party yet.

Steve and I have been talking it over, trying to decide what to do.  Last night he came back from tucking her into bed and told me he had asked Alexa what she would like to do for her birthday.  He said, “Do you want to have a party?” “Party.  Yes.”  “Who would you like to come?” The first person she named was a caregiver that used to work for us but whom we haven’t seen for quite a while.

We’ve had wonderful people come into our lives through a family support program in our state.  We stay in touch with some but it is natural for their lives to change, for them to move on.  Usually I take it all in stride but last night it just seemed like one more reason to grieve – the fact that my daughter doesn’t know how to make friends of her own.  She has our family friends and people from the program who are paid.  I don’t mean to sound ungrateful but there is a huge part of life she is missing out on and sometimes I worry about whether or not she knows.

I’ve been hearing about other mothers who mourn this for their children.  One story was recently on the news.  A mom asked her Facebook friends to send her son who had autism a card for his birthday and added it was all right to “share.”  He got cards from all over the world.

I understand this request completely because we parents of children with autism need society to be aware that friendships rely on communication and our kids struggle hugely with that.  Alexa loves people and wants to communciate.  You can tell by the way her eyes dance when people make the effort to engage.

I wonder if it is time to be a blessing to more people with autism. I wonder if there should be a movement of sending them birthday cards. A beautiful symbol reaching across the communication gap saying that there is a world of friends who care.

If you want to be a blessing to Alexa, please send her a card for her birthday. Musical cards are her favorite. She keeps them in a special basket and opens them often. They produce the sweetest of smiles.

Alexa Watt
7 Old County Road
Amesbury, MA 01913

I will end this blog with these borrowed lines from Helen Keller:

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

Blessings upon blessings to you!

My Authentically Awesome Day Spent With Noah

Noah is a thirteen year old friend of mine.  He is at a point of transition in his life which has put him between schools with a solid week off.  His mom, my good friend, lined up some people to do things with him while she was at work and asked if I could check in on Wednesday.

When she asked me to do this I had a fleeting moment of wishing Noah was a girl.  I know what to do with girls.  I mean, I can always take them shopping.  I don’t know anything about 13 year old boys except what I can remember from my brothers.  Teenage boys are completely out of my comfort zone.

This morning (Wednesday) I googled, “Fun activities for 13 year old boys.” Up popped the usual stuff – activities even I would have thought of.  They were all too expensive or involved long periods of time spent out doors.  I glanced through the window.  It was snowing again.  I had to think of something else.

Mindful of how inadequate I felt about spending time with Noah, I got a piece of paper and made a list:

“beach

hardware store

location of Noah’s choice

Mission: locate 3 items that describe who we are.

(do not talk about it yet)

McDonalds: eat lunch and tell each other the “what and why” of what we got.”

When Noah got in my car, I handed him the paper, wondering if he would think the whole thing was lame.  “This is our mission if you choose to accept it,” I explained. He read the list and shrugged. “OK,” he said.

On the way to the beach we chatted about how his mom does not approve of McDonalds.  I told him I was aware of that and it could be the very reason I chose that place to eat.  I asked him if anyone had ever taken him there before.  Only his grandmother in Florida.  My plan was wicked but perfect.  Noah respectfully suggested, “Maybe we shouldn’t tell my mom.” “I think we should take a picture of you eating and send it to her!” I replied gleefully.  Noah laughed.  “What time is lunch?” he asked.  “Ummm, 12:15?” I said.  That meant we had about an hour to find our things.  Noah and I agreed having a deadline made it more fun, and 12:15 sounded better than 12:30.

We noted that not very many people were outside and the blustering beach parking lot was practically empty.  “Man, we are really nuts,” I said.  “Are you ready?  Let’s make this quick!”

We yelled as we ran down towards the ocean.  Yelling also added to the fun factor somehow.  I saw a small piece of driftwood and lifted it out of the sand and snow to inspect it more closely.  Yes, this would do just fine.  I ran out to Noah who had stopped at the shoreline with waves furiously crashing around him.  He stooped down and picked up a handful of shells.

“Done?” “Done!  Let’s go!”

We ran back to the car and cranked the heat.

“I could say a really mean joke about that piece of driftwood you got but I won’t,” Noah said.  “Oh come on, tell me!”  “It’s really mean,” he warned.  “I can handle it – tell me!” I insisted.

“You got that piece of driftwood because it’s old but light – it’s been floating around in the ocean for years.”  I pretended to clutch at my heart.  “You’re killing me here!” I hollered.  “I told you it was mean,” he said.  “But there was a compliment in there too!  I said it was light and so it could float and stay on top of things!”  “Yeah, right,” I grumbled.  “I know.  I’m old.”  I told him exactly how old I was.  He told me he didn’t think I was that old which made me feel better but only slightly.

Next on the list was Home Depot.  “You’ll probably guess what I’m going for first,” I said.  “Paint?” Noah asked.  I nodded.  “Now let me say a word about price.  Whatever we buy has to be 5 bucks or less – preferably less, as in free.”  Noah said he was thinking he should get a snow blower.

When we got in the store he pointed to a rider lawn mower.  “Very funny,” I told him.

I went straight to the paint chips and then looked at the packets of seeds.  Noah met me at the front.  “What did you get?” I asked.  He pulled out a lighter.  I wondered if I had thought this activity through enough as we went to pay.

I asked Noah where we were going next since it was his choice.  He told me to drive to Walmart.  The whole process was repeated.  We ran back to the car.  It was 12:13.  McDonald’s was a few minutes away but we decided we were close enough to say we had reached our goal.

The poor boy said something about ordering a whopper.  I told him that whoppers were at Burger King.  We both stood in the restaurant aghast as we saw the calorie count listed next to each item.  “I don’t think I should order a hamburger…” he said, clearly distrusting the beef.  “I guess I’ll get some chicken nuggets,” he offered only when I told him a frappe was not a good lunch choice.

“OK, let’s start!” Noah said when we sat down with our food.  I thought he meant digging into the fries but he was looking at the bag of stuff we’d brought in.

He instructed me to go first.  I hauled out my piece of driftwood.  “Look at this – do you see anything in it?” I asked.  Noah guessed, “Something beautiful?” “Yes,” I answered. “But more specifically, I see a deer.  Now do you see it?” He shook his head.  I pointed to the nose and antlers.  “This says who I am because I like to see beauty in different things – you know, not just the obvious.”  “Cool,” Noah answered.  He pulled out his shells from the bag.

“These shells are me because they are strong and beautiful but resistant.  They get pounded by the waves but still, they continue to prevail.”  I stared at him with my mouth open.  “Noah!  That is profound!  We’ve got to write this stuff down!”  I searched through my purse for a piece of paper.  Noah handed me his napkin and I jotted down some notes.

Next was my paint chip.  I pointed to a color called ‘Cantaloupe Slice.’  “Peach has been my favorite color for a really long time.  It is me because it’s part of orange – a strong, happy color but it’s toned down a bit, you know?  Strong but also soft.”  Noah nodded his approval and pulled out his lighter.

“Well, at first glance this seems fiery,” he said, “Not to mention dangerous,” I thought.  Noah went on, “But when you take it apart, it’s complex and cool inside.  That’s me.  I might seem all fiery but inside I’m complex and cool.” Later he told me how he knew this – he had actually taken a lighter apart one time.

“Noah, you are amazing,” I said.

I grabbed what I bought at Walmart.  It was a plastic bag of roots.  “Well, I was looking for tulip bulbs because I am Dutch.”  Noah asked me how the two things were connected and I explained that tulips were grown in the Netherlands.  “But you are supposed to plant tulips in the fall so I had to go to Plan B.  See what these are?  Bleeding hearts.  My heart is….” Noah began to roll his eyes.  “Wait!” I said.  “I got bleeding hearts because my mom died and I am sad.  That is a good reason, don’t you think?” He agreed solemnly that it was a very good reason.

Noah pulled out his Walmart purchase – nerf gun bullets.  “This is me because I might not always start the trouble with my sister but I am always a part of it.  You know, like I might not be the one who has the idea to jump off a bridge, but I would be the one to think of doing a flip while jumping off the bridge.” I wrote down his words.  “Attempt to do a flip,” he corrected himself.

I sat back.  I had taken this kid to McDonald’s and bought him a lighter and nerf bullets.  Now we were talking about jumping off bridges.  I really wasn’t looking very good at this point.  “Do you think your mom is going to be mad at me for buying you a lighter?” I asked and he said, “No. We’ve got lots at home.”

As we got back into the car I told him about the time my brother blew up a frog.  We got serious for a minute and I asked him if he was worried about the whole school situation.  He said he thought things would turn out the way they were meant to.  I told him I thought so too.  He asked me if I wanted to hear a really great quote he found from Albert Einstein. “Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

“Wow,” I said.  “That is a great quote for everyone,” thinking of how I tend to dwell on the things I cannot do.

I dropped Noah off back at his house.  “Thanks Ali!  I had fun!” He said as he got out of the car.  “So did I, Noah!  Remember, next time you plan the activity!” I told him, wondering what would happen if I spent more time with people who I considered out of my comfort zone. I was pretty sure I’d be a better person if Noah was any indication of what we had to learn from each other.

Later that day I got a call from his mom, my good friend.  “I can’t believe you took my son to McDonald’s!!!!!” she began.

 

Peeking into Heaven

Like Catholics visiting the Vatican and Muslims making their way towards Mecca, so did Steve, Alexa and I go on a pilgrimage last weekend.

Our pilgrimage took me running down a block in Brooklyn, NY, at 8:00 on Sunday morning trying to keep up with Steve who was pushing Alexa in her wheel chair over the uneven pavement of the sidewalks.  It had all three of us rushing to catch the G train, getting off two stops later and then walking a couple more blocks until we found Smith Street.

It had us standing at a corner waiting for the light to change, looking at the storefronts around us for what might really be the doors of a church.  Three people joined us, waiting for the light to change.  I noticed they were wearing dressy clothes.  “Are you going to The Brooklyn Tabernacle?” I asked them. “Yes!” they said and pointed, “There it is!”

I told them we came from Massachusetts to hear the choir.  “Our daughter just loves the choir, we all do.”  “Well, I hope the choir is singing today,” one of them said.  “They usually do at this service, but don’t worry if they’re not here.  The Brooklyn Tabernacle Singers are just as good.  You won’t be disappointed either way!”

We pushed Alexa through the doors and into the sanctuary which looked like an elegant old theater that had recently been redone.  Alexa was immediately intimidated by the size of the space, so she jumped up and headed for the door.  Steve and I put our arms around her.  “No, we’re going to sit down.  You can do it.  Look up there!  I see people in the choir loft!  The choir is in the house!”

The man from the street corner touched Steve on the shoulder and pointed to the stage.  “They’re here this morning!  Bless you!”

It was the first of many “Bless you’s” that were offered us during the next two hours.  Six times we counted different people, mostly men in suits, going up and down the aisles welcoming people, shaking their hands, saying, “Bless you.”

Alexa was still nervous.  She asked me for candy and I gave her one piece after the other until I worried that too much sugar wouldn’t help the cause and switched to sugar-free mints instead.  I rubbed her back and arms.  “It will be OK, Alexa.  We’re going to hear The Brooklyn Tabernacle Choir sing!  You love them!”

Announcements were flashing up on a large screen.  One said that if a child was becoming disruptive, parent’s were welcome to take them to a special room with a monitor so that they could still hear the service.  I was quite sure this was meant for babies but thought maybe it might be a way for Steve and me to listen to the sermon.  We’d be fine for the worship part of the service, but there was no way Alexa would be quiet the rest of the time.

People were standing up talking all around us.  The choir ran through a couple of songs.  It was a huge, thrilling sound – just a small taste of what we were going to experience.

Finally the lights dimmed and people found their seats and sat down.  The 280 voice choir stood up and came to life.  Belting out a song, they were accompanied by a band and some stringed instruments over to one side.  The whole auditorium jumped to their feet and sang along.  The air was so filled with music that the music had no where else to go but into your bones, into your heart.

I felt my eyes fill with tears and looked at Steve.  His eyes were filling also, we were both so moved by the sound.  They were singing a song we didn’t know.  Alexa’s eyes darted around.  Next came a song that was more familiar to us.  Alexa started to relax.  I saw a hint of a smile.  She even started clapping.

All around us people were swaying to the music, lifting up their hands, singing as loudly as they could, adding shouts of “Hallelujah!” and “Amen!”  We were in the Promised Land.

Alexa turned her body so she could watch both the choir and the other worshippers.  Her smile was wide and radiant.  She yelled out her contribution, “This is wonderful!  Wonderful!  Chitty Chitty Bang Bang!”

After a couple of lively tunes, the choir suddenly swung the audience into the chorus of a slower song.  Steady and sure, the words seemed to reach out and embrace our little family.

“You alone are my strength, my shield
To you alone may my spirit yield
You alone are my heart’s desire
And I long to worship thee.”

It was Alexa’s all-time favorite Christian song.  “As the Deer.”  Such an old song, really.  It was written by Martin J. Nystrom in 1981 and was based on Psalm 42.  We hadn’t sung it in our own church for a quite a while.  Now we were singing it with this 6-time Grammy Award winning choir in this special, holy place.  It felt like God himself had come down from heaven and was saying, “Alexa, this one is for you.”

“As the deer panteth for the water
So my soul longeth after thee….”

I couldn’t help it, tears started streaming from my eyes.  Alexa turned to me and tried to wipe them away as they fell.

The pastor came to the podium and asked the choir to sing one more song as parents brought their babies forward for a Dedication.  It was time for us to go.  We slipped out the back doors and started looking for that room with a monitor.

No one we met in the hallway seemed to know what we were talking about.  Finally someone walked us to an elevator where a woman stood with a large tray of muffins in her hand.  There was a “hostess” tag on her dress.  We told her what we were looking for, she looked at Alexa and cheerfully said, “Follow me.  I’ll take you to someone who can show you where to go across the street.  You can bring your daughter there and then come back.”

What in the world?

The elevator went down.  The door opened.  “Now, there should be someone standing right here.  Where is he?” she wondered out loud.  Suddenly a large man appeared in front of us.  She told him to show us where to go.  He understood but Steve and I had no idea where they were taking us.

The man opened up a small side door that led outside.  We seemed to be at the bottom and back of the building we had entered originally.  He pointed across a street we didn’t know.  “See that flag over there?  That’s where you need to go.  Are you coming back?”  We couldn’t say.  “Well, if you want to come back, just knock on this door and I’ll let you in.”

We crossed the street, entered the building where we were met by still more strong looking guys wearing suits.  One certainly felt secure around here.  We told them we were looking for a place to bring our daughter.  A guy stepped forward, “I’ll bring you up!  Are you registered?”  We explained that we were just visiting from out of state.  “Well, follow me, I’ll show you where to go.”  It seemed to be a recurring theme around here.

He took us to an elevator and we went up two floors.  We walked around a corner and he pointed to an open door.  A man and woman were standing in a room along with one younger child.  The room was painted to look like a bright blue sky with a yellow sun and birds flying around.  The three of us walked in, confused.

The woman greeted us and said, “Why don’t you tell me a little bit about your daughter?”  I took a deep breath.  “She has autism.  Pretty severe.”

The woman smiled at me reassuringly.  “This is my field.  What kinds of things does she like to do?”

“She likes videos and music.”

“And snacks,” I told the man while the woman scrounged around in the closet.  “Do you have snacks?”  “Yes,” he said.  “We have plenty of snacks here.”

“Alexa look!  We’ve got all the Veggie Tale DVD’s!” the woman said.  Alexa looked at them, reached out to choose one, then changed her mind and dropped her hand.

“What she really likes is The Brooklyn Tabernacle Choir,” I said.

“Well, we’ve got them too!” and she pulled out one of their DVD’s.  She whispered to Alexa to get her attention, a trick one of Alexa’s best teachers taught us long ago.  Clearly, this woman knew what she was doing.

She turned to me and asked, “Does she have any behaviors?”

“Yes,” I told her truthfully. “But I don’t think you will see them here.  It’s just – if she tells you to put something away, I would do it.  That means something is bothering her.  She has lots of OCD issues.”

“No problem.  Is she bothered by loud sounds?”

“No.”

The guy told us his name was Kenya and had me type his name and number into my phone.  He went to write my number in a notebook.  ‘What is your last name?” he asked.  I glanced at his paper.  He had written “Sister” and was waiting to hear “Watt.”  I smiled.  That’s right, I am Sister Watt.

“You guys go back and enjoy the service.  We’ll be fine here.”

I looked into Alexa’s eyes.  They seemed to be saying, “You kids get out of here!  Leave me alone for a while!”

Feeling incredulous, Steve and I went back across the street and knocked on the little door.  It opened immediately.  After a couple of wrong turns, we found our original seats again and sat down, relieved that the sermon hadn’t started yet.

The service was humbly presented, relevant and meaningful in our faith tradition.  There were a few more hallelujahs and amens, some more bless you’s.  There were prayers and heads bowed in quiet contemplation and then more tears as the choir sang again.  Way above their heads I saw three words beautifully carved from wood, “GOD IS LOVE.”

The pastor concluded by telling everyone to turn around and hug somebody.  Steve turned around and a small, older woman opened up her arms to him.

“I’ve been praying, wondering if I should tell you something,” she told us.  “Tell us what?” we asked.

“The minute I saw your daughter, God put her in my heart.”  These last words were uttered with such deep conviction, I instinctively grabbed her hands.  “I mean it,” she said.  “He put her in my heart.  I am going to be praying for her.”  She explained that she was in Education but not in Special Ed.  She told us a little bit more about herself.

“There was something about your daughter,” she said.  “I could feel the spirit of God when I saw her.  I could feel it.  I’m telling you, he put her in my heart,” she said again.

Looking straight into my eyes, she said.  “God is going to heal your daughter.  Jesus sets the captives free.”

“Well, I’ve never been one to demand healing for her from God,” I tried to explain.  “But lately, I have been praying – so it is interesting that you are saying this to me right now.  I have been asking God to give her more healing, if that makes sense.”  The woman nodded her head.  “She needs more healing because she still struggles so much,” I continued, thinking of how uptight she was about our bags being at our friend’s apartment, where we had spent the night.

Traveling with Alexa is always stressful.  All of our bags have to be together, touching each other all the time.  Nothing can be moved.  When it is, she becomes very anxious and tries to lash out.  Yet she loves new experiences like walking around the city and taking train rides.

“Well, she is in my heart now and I will be praying too,” the woman said again.  She wanted to write down Alexa’s name.  We exchanged names and phone numbers.  I thought to ask for hers because if God does something drastic I am going to want to give her a call.  I snapped a picture of her with my cell phone as we were leaving.

Steve and I ran around the building, trying to find where we had dropped Alexa off.  We flew through the door and up the stairs to look for her.  She was calmly standing next to the woman we had met before.  Both of them were beaming.  “We had the best time!”  The woman said.  “I took her downstairs to a room with noisy kids and she just loved it there – she didn’t want to leave!”

We didn’t want to leave either.  It felt like we had stood on our toes and peeked into heaven where we could take deep breaths of blessings, where love is strong and hope, a tangible thing.

Pretty Girl

Yesterday morning at 8:20 I was sitting, bleary eyed in an office chair outside of Dr. Prince’s office.  Alexa was standing across from me.  She was chattering happily.

Not with words I could identify about anything specific, just cheerful, happy words.

Suddenly she reached up to touch the little clips holding back her thick, wavy hair sweeping to one side.  I watched her as she tried to pull them out, intrigued.  It looked like she was primping.  I never saw her primp before.

“Pretty girl,” she said.

I stood up and helped her get the clips out.  “Yes, you are a pretty girl,” I told her, my fingers smoothing back her hair.

“Pretty girl,” she said again and smiled.

I put the clips back in and she reached up to touch them, this time leaving them in, just checking on their placement, perhaps.

Alexa and I had a tough week.  We experienced some set backs.  Hormones were raging and things are always changing and an intense episode of aggression happened on Tuesday afternoon.  Alexa became anxious when I was writing something down and I just didn’t stop fast enough.

I was pretty distraught.  My friend Suzanne came over to be with Lex and me until Steve got home.  Lex was happy again when Suzanne came through the door, but my face was red from crying.  She ate burnt pizza with us, helped me start a knitting project and had us all laughing again in no time.

She had just gotten back from a missions trip to Mexico with our church which deeply moved her.  Steve and I teased, “Our family is all the missions trip you need.”

Later that evening Dr. Prince called.  “I can’t believe I let that happen!” I told him.  “I am so well trained!”  “Ali, this has nothing to do with how well trained you are,” he said.  “All we can do is set the right conditions for health to take place – we can’t make it happen.  That is as true for Autism as it is for Epilepsy or Diabetes or any other medical situation.  Things happen and they are out of our control.”

As I was putting away my botched knitting work and checking my email one more time, Steve was watching “America’s Got Talent”.  I heard them questioning a contestant and then heard the contestant start to sing.  I stopped what I was doing and walked back into the living room.  Steve and I stared, spell bound, as this big burly guy sang a song he loves to sing to his wife.  “Wow,” we said to each other with tears in our eyes.

I went into the bathroom to get ready for bed.  I washed my face, still humming the tune.  Steve and I read like we always do before turning off the lights.  He fell asleep immediately but sleep eluded me.  I got up, got a drink of water and realized the words of that song were still playing in my head.  I tiptoed into Alexa’s room and got under the covers.  I felt the sturdiness of her warm body against my back and felt her gentle breath on my neck and let a few of my tears fall on her pillow.

The words of the song were my words for Alexa tonight.  The words of the song were God’s words for me.  Whatever difficulty of life we were caught up in at the moment, love would always have a tighter hold.

Make You Feel My Love
by Bob Dylan

When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven’t made your mind up yet
But I would never do you wrong
I’ve known it from the moment that we met
No doubt in my mind where you belong

I’d go hungry, I’d go black and blue
I’d go crawling down the avenue
There’s nothing that I wouldn’t do
To make you feel my love

The storms are raging on the rollin’ sea
And on the highway of regret
The winds of change are blowing wild and free
You ain’t seen nothing like me yet

I could make you happy, make your dreams come true
Nothing that I wouldn’t do
Go to the ends of the earth for you
To make you feel my love.

The Self Inside

I remember riding around with Alexa when she was five years old, thinking:

“There has got to be a way for me to get it through her head that she cannot hit people.  She cannot pull people’s hair.  No matter how upset she is, she just cannot do it.  The world will be cut off to her if she does.  She knows better, she is capable of more, oh God, please help me communicate this to her!”

These were my thoughts, pretty much verbatim, tonight as I drove her home.

Today there was an incident involving a stranger who had change in his hand.  Alexa needed that change put away.  She took it out on the caregiver who was with her.  In a public place.  My worst nightmare.  Oh God.

I am reminded of another mother I know who has a son with autism, who has an issue with coughing.  He gets upset and/or aggressive any time someone coughs.  Somehow this woman has weathered cold after cold.  Can you even begin to imagine fighting the instinct to cough?

We parents of children with autism have learned to so tightly control what happens at home.  But once in a while the truth hits us again: we cannot control other people.  We cannot control the world.  Yet, we desperately want there to be a place in this world for our children.

At my last C.A.B. (Citizen’s Advisory Board) meeting with the D.D.S. (Department of Developmental Services) someone mentioned a new drug being tested for O.C.D. (Obsessive Compulsive Disorder).  I know, a person could get lost in the initials of such things.  “Please, oh please bring this new drug on,” I thought.

If I could sum up in one word what I am feeling right now it would be, ‘Determination’.  Just like I felt when Alexa was five years old.  Then, as now, I mustered all the determination I could gather and poured myself into guiding my child towards being a fully life-participating adult.

I am older now and it seems I have always been tired.  There are setback days like today, so what keeps this determination going?

The fact that I can still remember.  Sixteen years ago, when I was riding around with Alexa in the car, some part of me remembered what it felt like to be five.  Today, although we are both older, some part of me remembers what it felt like to be twenty-one.  The uncertainty, the expectations, the self you showed to the world versus the self you knew inside.

So my determination continues because growing older means growing, period.  I hold onto this truth for my daughter.  I see the self she tries to show to the world but I also see the self who is struggling inside.  Sometimes they are at war with each other.  I am putting all my bets on who’s inside.

Making a Memory

Steve’s eighty-something parents are arriving here tomorrow.  We can’t wait.  Alexa keeps saying, “Grandpa and Grandma!  Grandpa and Grandma!”

They know to come when she is still at her day program, Coastal Connections.  They know they have to quickly put their suitcases in the bedroom before she gets home.  We will remind them about putting away any stray plastic or paper bags.

I’ve been watching her this week, trying to gauge how she will do with this upset in the household.  Last night I noticed she’s been leaving the canvas basket filled with her CD’s and two car sticks in our living room, touching the cabinet in which the other CD’s are stored.  This breaks my heart.

Usually she keeps this basket close to her, in her bedroom.  The two car sticks are the two small cuts of wooden curtain rods left over from our dining room.  (Alexa twirls heavy sticks in a fascinating rhythm – it is her special gift in life.  These particular sticks were deemed safe for the car – “car sticks”.) Recently, she became aware that her favorite Karaoke  CD’s were kept in the living room and now I can see that she is torn about where her CD basket really belongs.

“Hey Alexa, do you want to keep the Karaoke CD’s in your room?”  I suggested.  She answered, “No!”

“Why not?” I asked.  She echoed, “Why not?”

“Yeah, why not?” I insisted, thinking it was a really good idea.

But she stood there flipping a Karaoke CD in her hand and repeated her favorite go-to answer, “No!”

Oh dear.   She’s up to re-arranging things.  I wonder if this is precisely  how my friends feel when I come over.

Alexa’s world is about to be upturned.  I know from experience it will be stressful but it will be worth it.  Steve and I will guard his dear, aging parents from Alexa as they try to take some clothes from the bedroom to the bathroom (a very short distance).  We will count with Alexa at various times as they gather up their things.  We will try to distract her when they are looking for some object that can’t be found.

Because there is the flip side.

We know that Grandpa will make his funny noises – created especially for Alexa.  We know that she will belly-laugh at this.  We know that come Sunday morning, Grandma will be ready before we are, playing hymns on our piano.  Alexa will stand watching her, enthralled.  We know that cocktails will be lifted as we celebrate being together, “Cheers!”  We know that getting stuck in beach traffic on a late Saturday afternoon won’t be a problem with four adults singing old songs to Alexa as long as we’re in the car.

Ants can keep on marching for quite some time, you know.

There is a cost of being together but it is worth it.  Since when doesn’t love demand some sort of price?  So we pay it, certain of a rich return on our investment.

“What, what are you doing?” asks the Grandpa in the original Parent Trap movie as his granddaughter takes in the smell of his tobacco and peppermint.

“Making a memory,” she profoundly replies.

Alexa loves these lines.

We’ll be making some memories this week.  I’ll let you know how it goes.