The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read.  Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award.  Yes, you read that correctly.  She did this in front of all the other students and their parents, including the parents of this young boy.

OK.  You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable.  To do it in this fashion is heartless.  And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table.  The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary.  The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

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When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion.  Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing.  It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house.  He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind.  So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention,  soon realizing that Aaron had disappeared but had not gone back into the house.  I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house.  He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys.  After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage.  “Here, Mom!!!” he exclaimed.  Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose.  Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight.  So, I took the little Dandelion and instead thanked Aaron.  When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug!  If you know Aaron, you know how unusual this was!  I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed.  I told him to come with me and we would put this special flower in some water.  This made Aaron very happy!  When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase.  Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

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I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion.  Yet, in no way was Aaron’s intent any smaller than Gary’s.  Both were full of love, expressed in two different and yet two very sweet ways.

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This is Aaron.  He does, in the midst of his often perplexing and annoying ways, show us his love.  He shows love on his terms and in his times, not usually on ours.  But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart.  It’s beautiful to see!

You notice I did say that Aaron can be annoying.  Aren’t all of our children, at times?  Yet never would I publicly shame Aaron as this teacher did to her student.  Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying.  It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should.  Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills?  It took him a while to wind down from that, just when I am most tired, but what did I expect?  There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow.  I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

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Our special children…ALL of our children…will open and thrive if given the opportunity.  A little water and some light totally changed my little Dandelion.  He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

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Just like our Aaron.  If given the chance, he can shine along with the biggest and the best.  It’s just going to be in HIS way, and I need to know that this is a good thing.  A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments.  He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new.  It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too.  And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

 

Holding Nora’s Hand

Nearly 20 years ago, Gary retired from the military and we moved to this house in this neighborhood in Kansas.  We’ve lived here the longest that we’ve lived anywhere and grown roots that we never dreamed would go so deep.

We hadn’t met our next-door neighbors yet when one day the kids and I were out working in our yard.  It was a hot summer day.  There in the driveway at the house beside us knelt an elderly man, our yet un-met neighbor, pulling weeds in the hot summer sun.  He was kneeling in his gravel driveway, working hard on those weeds, all the while coughing like crazy.

I was worried about him, so I told our three children to run over and see if they could help him.  Off they scurried, only to be told no and thank you.  We were sad that he didn’t want the help and worried about his coughing in the hot sun, but no is no.

Time went by, as have many of my memories.  I don’t recall how we broke the ice with our neighbors, but I do know that they loved our white German Shepherd, Rainey, and they eventually learned to welcome us and our children as their new neighbors.

Thus, we slowly came to know Don and Nora Kelly.  I distinctly remember that first Christmas, standing on Don and Nora’s front porch holding our simple covered plate on which we had placed some home-made Christmas goodies.  Don was totally surprised to open the front door after we rang the bell, and to see all five of us there with our smiles and our Merry Christmas wishes as we handed him the plate.  He was embarrassed and awkward as he thanked us, and then said, “But we don’t have anything for you.”  We told him it wasn’t necessary and that we just wanted to wish him and Nora a wonderful Christmas.

The following Christmas, our doorbell rang one day and there stood Don, a smile on his face and a gift bag in his hand.  We exchanged Christmas gifts every year from that point on, for fifteen years.

Don and Nora were very private people, still not wanting to ask for or to receive help from any of their neighbors.  They did, however, learn to take the garden veggies that we shared with them every summer.  I also learned that Nora absolutely loved my homemade rice pudding, so I would sometimes surprise her with a big warm bowl full…and remind her that she had to share with Don!

Don’s hearing wasn’t the best and he never would get hearing aids.  Nora loved to talk…and talk…and talk.  I knew never to go over if I was in a hurry to get away, because Nora had lots and lots to say.  Don would smile and then disappear, leaving Nora and me to talk.  Well, leaving mostly Nora to talk and me to listen.

Don and Nora were very close.  They went everywhere together.  I never saw Nora drive.  When they were out shopping or eating, wherever they walked, they always held hands.  Always.  People who didn’t even know them recognized them as the cute old couple who were always holding hands.  There they would go, little tiny Nora dressed to the nines and with her long gray hair pulled back in a ponytail…and very tall Don, usually in a suit with his hair still dark.

Sometimes I would run into them at our local Dillon’s store.  We would stand in the aisle, Nora talking up a storm in her little shrill voice, with Don beside her smiling as usual.  The last time I saw them there, I snapped this picture of them as they walked away.  Hand in hand…always.

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That Christmas, in 2013, I went over to their house as usual with our Christmas goodies.  Don answered the door.  He didn’t look well.  I stepped inside as he took our gifts and then said that he would get Nora to go downstairs to get ours.  I thought that was unusual.  Nora soon came with their gift and told me that Don wasn’t strong enough to go down the stairs and back up.  He had been sick, she said, and she was worried.

Things went downhill quickly from there.  Their other neighbors, the Tuflys, were also keeping an eye on Don and Nora.  One day they told Nora that an ambulance was coming to take Don to the hospital.  They had called one to come, and despite Nora’s objections, Don was soon admitted to the hospital.  When he finally came home days later, he was under Hospice care for advanced cancer throughout his body.

Nora insisted on caring for Don at home, though she was weak and exhausted herself.  But Nora was a tough wife who refused to let Don die anywhere but at home.  Our two families on each side of them helped…a lot…and three months after returning home, Don was gone.

Poor little Nora was left alone.  After being married to Don for 68 years, she was suddenly all alone in her big house and all alone in her many big decisions to make.  She had no hand to hold.  It was sad to see.

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She so wanted to be with people all the time.  She loved coming over to our house, including spending time with Aaron even when he got impatient with her.

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Both of us neighbors stepped up to help her with the housework, yard work, shopping, doctor appointments, and the many decisions she needed to make about her future.  Eventually, we helped her sort through every room and closet and drawer of that big house as she got ready for an estate sale and then a move to a retirement center.

Five months after Don died, we moved Nora to her new home.  What a huge transition this was for her!  Nora, I learned, was extremely afraid of being alone.  But alone she was, and she knew she had no choice.  Her inherent stubbornness stood her in good stead as she adjusted to not only this very new life, but a new life without Don by her side.

I had no idea at the time about what Nora would need, but I did know that she needed to be seen by her doctor about a wound she had gotten on her leg.  She was sent to the wound center, where she initially needed to be seen several times a week.  I reluctantly made the appointments for her, not sure how I was going to manage both Nora’s schedule and taking care of our special need’s son, Aaron.  Yet I couldn’t just walk away and leave Nora stranded.

Things grew after that.  Nora needed compression socks, special lotion, wrappings, and more doctor appointments.  Her eye doctor visit came, with a referral to a retina specialist.  She needed a new family practice doctor, along with an ENT referral and soon had to be seen by a podiatrist.  And don’t forget her normal dental visits…medicines to fill…insurance…hearing aids to buy.  It was too much for Nora to manage and understand on her own.

In a way, I became the daughter that Nora never had…and she became the mother that I never got to care for in her old age.  We got into a routine of sorts, Nora and me.  We were getting into a groove, you might say, bumps and all.

It hit me one day that I was now the one holding Nora’s hand.  From the very beginning of our outings, she would hold my hand as we walked.  Part of her reason was that holding my hand gave her stability, but I learned that holding my hand also gave her security.  She knew she wasn’t alone.

Nora needed me, but she had to learn to share me.  She especially had to share me with Aaron.  This meant that her appointments had to be scheduled around his doctor visits, and around the fact that I had to take Aaron to his day group every day and then pick him up.  I never knew about Aaron’s seizures, of course, so there were times I had to cancel a fun day or a doctor visit day with Nora.  She learned to adjust, but oh it was so hard for her to do that.

Nora also had to learn to trust me.  Trust was not an easy thing for Nora.  I learned that fact quickly on the day she was called back to see her doctor and I offered to watch her purse for her.  I got a big NO from her on that one!  Over time I knew that if Nora and I were to be together as much as we were, then I would need to earn her trust.  With time, that happened, and it filled me with joy that she would trust me with so much of her life.  And she even let me put my hand in her purse to help her find things – a HUGE no-no when I first got to know her.  When she let me hold her credit card or hold her purse while she was in a restroom, I knew I had truly arrived at full trust!

Our relationship continued to grow beyond doctor visits and trips to the grocery store.  We shared with each other our lives, our disappointments, our worries, our joys.  Nora gave me advice gleaned from her many years of living, and I tried to give her encouragement when she was scared and worried.

As time went on and we grew closer, Nora would also reach for my hand in more personal ways.  When I was driving, she would hold my right hand and tell me that she loved me.  As we sat in doctor’s waiting rooms, holding my hand gave her comfort.  And if we had a disagreement or she was upset, she would take my hand as she told me she was sorry.

One of the best things that we shared was our love for God.  Nora would pray the sweetest, most heart-felt prayers.  We nearly always prayed before we ate, and Nora really wanted to pray before seeing a doctor.  She was always the most panicked before those doctor visits – even before getting her teeth cleaned!  But prayer was a big part of Nora’s life, both praying out loud together and asking me to pray for her at home while assuring me she was doing the same for me and my family.

Nora wasn’t always an easy person to be around.  Our personalities were mostly opposite of each other.  I could make her laugh, though, and those times were so much fun.  It was good to see her relax, to enjoy life, to laugh, and to have something positive to remember.  She especially loved just riding, looking out at the pretty Kansas scenery as we drove up to Yoder or as I purposely took the longer, country route back to her apartment when I could.

She loved it when I took her to see the graves of Don and their son, Jim.  We made sure that there were always flowers in the vases…also making sure she could always buy them for half price at Hobby Lobby!

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And oh, how she loved eating out!

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Nora definitely made me laugh.  Did she ever!  She had the funniest sayings and such a spunky attitude.  She said whatever she thought, but she could get by with it at her age.  Servers in restaurants and the employees in stores we frequented enjoyed her so much.

Nora was very, very thrifty.  She never wanted to spend a dime more than was necessary.  I became very proficient at sneaking more money on the table for the server’s tip because Nora rarely left enough.  Once when we were in TJ Maxx, her favorite store, she insisted on me picking out a sweater as a Christmas gift from her.  Here’s how it went:

 

Nora:  Now, Patty, pick out anything you want and don’t worry about the price.

Me:  Nora, you don’t have to do that.

Nora:  No, I WANT to do it.  Now get something and don’t look at the price.

Me:  Are you sure?

Nora:  YES!!  Get whatever you want and don’t even think about the price.

Me (finally holding up a sweater):  I like this one.

Nora:  How much is it?!

 

HaHaHaHa!!!!  That was so Nora!

I have many funny stories that I could share about Nora.  Sad stories, too, as this past year Nora began to greatly decline.  When she first moved to her new home, she was alert and mostly healthy and so pretty.

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But last year, I noticed her increasing tiredness and confusion and weakness.  I talked her into getting a wheelchair to make our outings easier.  She would fall asleep while we were shopping, or when I would do her nails.

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Her vision was getting worse, and even though her retina doctor wasn’t sure if treatments were helping her, she insisted on continuing with them.

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She would call me, and others, at all hours of the night.  She would wander the halls of her assisted living center during the night and was very confused about what time it was.  But she kept pushing on, not wanting the increased help that was provided and not wanting to discontinue our outings.

On May 1, I picked Nora up for what she called a “fun day.”  That meant no doctor appointments or anything else stressful.  We went to our new Cheddar’s for lunch.  Nora had never been there, so she was excited.  She ate a bacon burger and fries, loving every bite.  Then we went to TJ Maxx, where she bought two big bottles of perfume.  I think she bathed in the stuff!  Finally, to Dillon’s for a few of her essentials, where the wonderful employees there greeted her and made her feel loved.

On our way back to her apartment, she took my hand as I drove.  “Patty,” she said, “I don’t think I thank you enough for all you do.”  I assured her that she did.  “No,” she said, “I don’t believe I do.  I just want you to know how very much you mean to me and how thankful I am for all you do.”

At her apartment, she sat and watched as I put her things away, opening her perfume bottles for her as well as her other items.  I showed her several times that her credit card was indeed in her wallet in the pocket of her purse, and that the zipper was shut.  I put her receipts where they belonged and her mail, and once again went over her medicines with her.  All the things we always did.

I could tell, though, that Nora wanted to talk so I sat down beside her.  She told me that she just wanted to be loved, so we talked about that.  I assured her of my love for her.  She wanted to talk about heaven, so we did.  There were some personal things said, revealing some of her hurts in life.  I put my arm around her.  I tried to comfort her as best I could, but she knew I was leaving soon.  She always hated my leaving and being alone again.

That day, while we were out, she asked about all my children…each one by name as best she could remember.  She asked if they were happy.  Before I left her that day, she told me that she was so glad my children were happy.  Then our last words were what they always were.

“I love you, Nora,” I said.

“And I love you, too,” she replied.

Then a kiss…because Nora always wanted a kiss goodbye.

On Sunday, May 5, Nora called to ask me to cancel her retina appointment on Tuesday.  She told me she was sick, so I told her I would make an appointment with her family doctor, but she said no.  Before we hung up, she told me that she didn’t think she would make it through this.

I had a full day on Monday, so I wasn’t able to go see her.  I planned to go on Tuesday to check on her and to try to talk her into seeing her doctor.  But on Monday night, shortly after 11:00, I awoke to hear my phone vibrating over and over on my nightstand.  I clumsily answered it.

The nurse on the other end identified herself.  I immediately thought that Nora must have fallen and that she was on her way to the hospital.  But it wasn’t that.

“Patty,” she said.  “Nora passed tonight.”

It was so shocking.  So fast.  If only I had known on that Monday how quickly Nora was going downhill, I would have gone to be with her.  I would have held her hand until the end, but instead she died alone.  I know it’s not my fault, but I do have regrets that I wasn’t there the way she would have wanted.

There were many other regrets that ensuing week for all of us who knew and cared for Nora.  Nothing was done in the way that Nora had carefully planned with me several years earlier.  Each of us have had to come to terms with this, and to say goodbye to Nora in our own ways, the best that we can.

I’m thankful for my years with Nora…for the good times and the hard times, even.  I’ve seen clearly that sometimes God plops a person right in your lap, out of the blue, for you to care for and love.  For me, it wasn’t only that I could help Nora.  Nora also helped me in ways I am still discovering.  And helping Nora was also a huge way that I could serve God.

I was privileged to hold Nora’s hand.

And I am sure that I will always hold Nora in my heart.

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Included

Last night, I peeked into Aaron’s room and saw this:

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THIS…is Aaron finishing The Meg movie by watching the credits.  He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away.  He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said.  “It won’t be long!”

To Aaron, the credits are a part of the movie.  He will not end a movie when most of us say that a movie is over.  No.  The movie is over only when the credits end.

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If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently.  It’s not the first time we’ve seen him start this thing, but it’s the most recent.  It’s not something that we can touch or see, but it’s something that we definitely hear.  And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago.  We were eating breakfast on a Saturday morning on our patio.  Gary prayed before we ate.  One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew.  He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right?  Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron.  Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later.  And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation.  He also has a blind spot when it comes to seeing how he is affecting others at times.  But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her.  He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game.  He doesn’t ask her about her life but gets his satisfaction by doing all the talking.  Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him.  He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew.  Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch.  Just the two of us.  Talking.  Uninterrupted.

But then we heard the door in the garage close.  Aaron popped around the corner.  We were caught!

There Aaron stood, talking and talking and talking.  Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

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Our brains freeze and our minds wander when Aaron talks non-stop.  Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about.  It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard.  Grapes!  It was fun to see the picture as we’ve all wondered if the plant was a grapevine.  Gary and I were happy!

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Then yesterday, she sent a picture of their first onion harvest from their backyard garden.  And again, we were happy.

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But Aaron was not happy.  Once again, he sensed more enthusiasm from us about Andrea’s life than his.  And once again we were doing damage control for much of the evening.  UGH!!

This morning, Aaron was up and on his computer at 4:30.  That’s 4:30 A.M!!!  I got him to go back to bed, but he was up again not long after.  And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed.  But not where he could hear me.  He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing.  I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said.  “Do you want some eggs and bacon?”

He did.  So later, there we were, sitting at our kitchen table eating eggs and bacon.  I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing!  And as we ate, I was able to assure him that he IS included in our lives.  Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening.  Asking questions.  Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress.  AIM.  Girl face statues.  Titanium Man.  The frozen ship.  The brain controls that make you dizzy.  And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered.  “Like her grapes and onions!”

I wanted to laugh but knew better.  And I know better than to think that this inclusion and being loved business is settled.  I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

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Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

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This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

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He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

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This past Saturday, he asked if he could help me with some pruning.

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He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

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His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

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No More Dog

Yesterday was the day that Gary and I have talked about and dreaded for so long.  We had to say that final goodbye to our precious Great Dane, Jackson.

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What a beautiful and wonderful dog he was to our entire family!

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In 2007, Andrea really, really, really wanted a dog…a BIG dog!  Gary and I really, really, really weren’t sure.  But finally, we said yes and the rest is history.  Jackson was born in May of that year, so he lived a good and long life of nearly 12 years, surpassing the normal life span of a Dane.

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After a few years, Andrea moved to Texas for grad school, and stayed there for career and now marriage.  Jackson stayed with us and enjoyed visits over the years from Kyle and Andrea’s doggies.

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Aaron loves animals and Jackson was his special friend.  Patient, kind Jackson tolerated Aaron’s noises, Aaron’s behaviors that sometimes scared him, and other behaviors that pleased him – like Aaron’s knack for sneaking him table food and doggie treats.

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Jackson also at times showed concern for Aaron’s seizures, such as in this picture shortly after Aaron awoke from a seizure.

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Many of you have asked how Aaron handled this loss of Jackson.  Gary and I talked so much about how to tell Aaron when the time came.  For months, Aaron knew that this possibility might become a reality.  We talked about it a lot, but when our decision came, and the appointment was made, it was hard to tell Aaron that the “maybe” was now going to happen the next day.

We told him at supper on Monday that on the next day we were having to put Jacks to sleep.

“I don’t want to put him to sleep,” Aaron said.  We told him that we agreed but we listed all the reasons it was necessary.  Aaron was mostly quiet about it then.

As I tucked Aaron in bed that night, he said again that he didn’t want to get rid of Jackson, as he put it.  But Aaron knew it was not going to change, much as we wished it could.

The dread hung over us all day yesterday, like a gloomy cloud.  I wondered what Aaron would do when he got home from his day group, knowing that in a short while we would take Jackson to the vet.

“Can I give Jackson some treats?” Aaron asked.  So, I told him to go ahead and give him all the rest of the chicken jerky treats in the bag, which were mostly small pieces, but to give them to him slowly.  Of course, this happened.

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Jackson was thrilled!  And so was Aaron, most definitely!

The time came, much as we wished it wouldn’t.  Gary and I got Jackson ready to go, making a potty stop in the yard.  I ran up to Aaron’s room while Jackson sniffed outside.

“Aaron,” I said.  “It’s time to take Jackson.  Do you want to say goodbye?”

“No,” Aaron flatly said.

I told him that I understood and said we would see him soon.

Gary sat in the back of the van with Jacks, keeping him from falling as he was so prone to do.  I pushed the button to close our garage door and was backing out of the driveway.  Just as I got on our road, I looked and saw that our garage door was opening.

“Good grief!” I said.  “We don’t have time for this!”  I thought our door was malfunctioning.

So, as I pulled back into the driveway, with the garage door opening, I saw legs.  And as the door fully opened, there stood Aaron in the middle of the garage…right at the open door…his right hand in the air, waving back and forth.

Bless his heart, he had indeed wanted to say goodbye.  I will never forget that image of him standing there waving his hand to his buddy.

I opened the side van door, and Aaron walked outside.  He stuck his head in the door.

“Bye, Dad!” he said.

He couldn’t bring himself to say the words to Jackson, but his eyes darted nervously to look at his friend.  Then Aaron backed up, eyes still looking at Jackson.  And as he started to walk away, he looked back one more time, still with scared eyes focusing on Jacks.

It was incredibly sweet and sad and broke down all my tough reserves as I cried all the way to the vet.

And Jackson, in what seemed like one final way of expressing his opinion of all this, pooped in the van!  Served us right…right?!

When we got home and sat down to supper, Aaron did another amazing thing.  He didn’t seem to mind at all that we had some tears, and if you know Aaron, you know how shocking that is.  Aaron hates for anyone to cry.  If I just sniff my nose, he instantly asks if I’m crying.  He thinks crying is weird…but in reality, tears make him very uncomfortable and he doesn’t know what to say or do.

Later, after supper, Aaron and I sat down to watch some television.  He was snacking on his new bag of Chex Mix.  Suddenly, he jumped up and walked to the kitchen, returning with another of his bowls.

“Here, Mom!” he said.  “I’m giving you some Chex Mix!”  He proceeded to pour me some in the bowl he had gotten and bring it to me with a big smile on his face.  And even though I didn’t really want it, I would never have said no after I saw his happy face.

You see, Aaron loves to share with people…most of the time.  But sharing his food or his movies or his treasures…whatever he has…is Aaron’s love language.

And it was like he wanted to share a snack with me because I was sad.  Kind of like he shared all those jerky treats with Jackson earlier, except I merited a bowl.  Then he kept bringing me the bagel chips and the “twirly crackers,” as he calls them, that he doesn’t like…dumping them in my bowl with all the excitement he would have if he was giving me something of huge importance.

But this was of huge importance because it showed me that he cared that I was sad.  Empathy doesn’t always come easily to Aaron, but on this night it did.  So I ate the crackers that I didn’t really want so much, more for him than for me.  Yet it WAS for me, too, because it was like a good medicine for my heart in so many ways.

Aaron, last night, agreed with our sadness and he showed it in the way that Aaron does…not with words or deep conversation…but with his actions.  He tolerated our tears, and he shared what was important to him at the moment.  I never tasted any better Chex Mix than what I ate last night!

This morning, after Aaron ate his huge pile of scrambled eggs that I made him for breakfast, he put his plate on the kitchen counter.  Little pieces of egg were on the plate…little pieces that ordinarily would have gone in Jackson’s food bowl for him to eat, much to Aaron’s great delight.

“I was almost going to go out and put those in Jackson’s bowl,” I said to Aaron.  “It’s hard to think that Jackson isn’t here.”

“Yeah,” Aaron replied.  “No more dog!”

And he walked off with that, making his chuckling noise that isn’t a laugh.  It’s like he’s satisfied with what he’s said…not necessarily happy but satisfied.

That’s the bottom line if I ever heard a bottom line.  Just get to the point with Aaron.  Say it like it is.  Put things into facts, place them in a category, and move on.

But I know he thinks deeply and he feels deeply.

That goodbye wave and my Chex Mix will remind me of that for a long, long time.

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My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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Aaron’s Bowl of Normal

Walking through the family room the other day, I noticed something red sitting on the end table beside Aaron’s favorite chair.  I knew he had left his bowl of Hot Tamales on the table, but there was something else.  I stopped to look, and this is what I saw.

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Aaron had set aside these two Hot Tamales.  This is nothing new, so I knew exactly what it meant.  It meant that Aaron realized these two Hot Tamales were a different shape and size than his normal Hot Tamales.  To Aaron, they don’t fit into the bowl of regular candy.  They are not the norm.  They must be separated from the usual candy, sitting there until all his candy is finished, and then thrown away.  He will not eat them.  They are unacceptable to him. 

Our Christmas holiday is still a warm memory to me.  However, not every memory with Aaron is warm and fuzzy.  Those unusual Hot Tamales help explain our family dynamic perfectly.

Aaron both loves, and somewhat dreads, our Christmas celebration.  He loves the anticipation of opening his gifts.  He looks forward to time off from his day group…time to be at home relaxing and filling his days with whatever he wants.  He likes seeing what food I am making, hoping that some of his favorites are in the mix. 

However, Aaron’s autistic mind is also very aware that his structured schedule is about to change.  He knows that he will soon need to share his ordered world with Andrea and Kyle…with their three dogs…and with Andrew.  He even must share his bathroom, for crying out loud!  In his mind, he is already setting aside some of these daily issues much like he does his unacceptable Hot Tamales.  They are not the norm, so they are cast off mentally as being unpleasing…yet in this case, necessary.

Aaron in many ways looks forward to our family being together for Christmas, just as he looks forward to eating his candy that is poured into one of his ever-present bowls.  But soon comes along those pesky interruptions into his ordered life…interruptions that are very difficult for him to sort and to deal with properly.

Christmas Eve is most often the time for what Andrew calls “Aaron’s Annual Christmas Meltdown.”  We say this with a smile when Aaron doesn’t hear us, but we also say it with some dread for what might come. 

Two of our best Christmas traditions occur on Christmas Eve.  My favorite is the Christmas Eve service at our church.  Each year we ask Aaron to come, and each year he turns down our offer.  The large crowds…all the talking with strange people…some of the louder music…and having to sit quietly for such a long time…are all very stressful to Aaron.  We understand this, and we don’t push the issue.  We know better.  But each year I’m sad that our picture in front of one of the beautiful Christmas trees does not include our full family.

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When we get home from the Christmas Eve service, our other fun Christmas tradition takes place.  Christmas Bingo!!  Otherwise known as the usual cause for “Aaron’s Annual Christmas Meltdown.”  Our Christmas Bingo is fun and loud and unpredictable.  Aaron greatly dislikes loud, unpredictable fun…which to him is NOT fun!  This is why Aaron shuns parties of any kind.  He says that people act weird at parties.  Never mind that on any given day one may hear Aaron clapping or saying outlandish things as he watches a show or scratching himself openly in Wal-Mart.  Aaron sees his actions as totally fine, but when Gary acts goofy as he announces each Bingo card, Aaron’s frustrations grow and grow.  Add to that our laughter and joking, winning or NOT winning each round, prizes that disappoint…well, Aaron’s bowl of normal is quickly being emptied and he is usually simmering as the game progresses.

This year, Aaron joined us after we had played a couple rounds.  He hovered near the table, observing us and seeming to need time to gather his courage to sit down at the table.  Aaron usually targets one of the guys, especially Kyle since he is new to our family and Aaron still isn’t sure it’s OK that he married Andrea.  He targets Andrew because Aaron has always been somewhat jealous of his brother.  And he targets Gary because Gary is Dad, and Dad is acting way too silly. 

When Aaron sat down with us to play, we all quietly decided to try to make the game as non-silly as possible.  We also decided to be as quiet as possible when announcing that we had a Bingo.  However, this plan ultimately made us laugh even more…as quietly as possible but still not quiet enough for Aaron. 

But something else was also going on with Aaron.  Andrea later said it very well.  Aaron knew that things were very funny because we were all laughing, but he couldn’t figure out what the funny things were.  There were many comical moments, but none made Aaron laugh.  He was focused and intense and struggling very hard to keep from being angry.  There was nothing worth laughing about in Aaron’s mind.  Instead, he was wondering why we were all laughing at the gifts and at each other’s comments, and as we see every year, his tension was mounting and his fun meter was doing way down. 

My heart went out to him as I just watched him sitting on the opposite end of the table from me.  He had just won a prize and was so very seriously opening the little box. 

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He loved getting a Bingo, and I found myself wanting him to win every time.  But life isn’t like that, and I knew he needed to once again learn to be a part of our world…loud and puzzling and frustrating and disappointing as it is.  He can’t remove the parts of life around him that are not his normal.  He must adapt as much as possible, and we must also be allowed to enjoy our family life together with him when we can…when he can. 

There are small ways that we have learned to let Aaron be…to not ripple the water unnecessarily.  Like when he won a bottle of body wash, but it was ladies body wash.  With each other, we would have laughed at this…making fun of the girlie name on the bottle and teasing whichever guy had the misfortune of winning it.  But not with Aaron.  We just kept quiet about it, watching Aaron stash his prize safely on the floor beside him.  And later that night, I found the body wash placed in the shower to be used by him the next morning.  I never said a word to him about it, and he happily used it…and smelled very nice!

We pick our battles with Aaron when we can, happy that he actually made it through this Bingo game without an eruption of anger.  His anger later spilled out toward me after I made a random comment about forgetting to put the ham cheese ball out to eat, saying that maybe we should start our game all over.  That did NOT make him happy…and neither did my hand motions that he copied angrily.  He was so done with that evening!  All of us were picked out of his normal bowl, trust me!

I was happy that his seizure during the night didn’t ruin his Christmas day.  I was happy that he was able to open his presents, though he was heavy-eyed and dreary after the seizure.  I was happy that his other seizure later that day was during his nap, and that he didn’t fall down. 

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And I was especially very happy that our neighbor came over and took our family picture in front of our tree.

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For really, our family isn’t complete without Aaron.  He may want to kick us at times out of his normal bowl, but then he does turn around and let us back into his life. 

And we do the same with Aaron, over and over and over again.  We welcome…we include…we modify…we adjust…we sigh…we go to bed tired – but we do love our Aaron and will always want him in OUR bowls as much as possible.