Autism Touches Every Aspect Of Your Life

Autism sucks. At times it contributes to immense suffering for both the person with autism and his/her family. Sometimes it just does. Period. End of story.

Frankly, I have it easy if you consider the many behaviors that encompass the entire spectrum of people with autism. There are those people who cannot speak. or toilet themselves or self-harm. My sons have none of these issues. We are fortunate.

But sometimes I get weary of the constant pushback.The whole I say “yes”, so he says “no”. The fifty pokes to my arm everyday. The constant giving of some of the deepest parts of myself and getting very little back in return. The feeling that I am doing too much, or not enough, and either way believing whatever it is I am doing; I am most definitely not getting it right. Sometimes it is downright discouraging feeling that your choices are limited, as is your pocketbook, in your ability to get your children the help that they need. And for those of us facing mental health issues along with autism the chances to obtain needed services decrease even more until the quagmire you are in looks a lot like quicksand and it feels that way too.

Yes, I know that my boys are teenagers and some of this is normal teenage behavior but often it feels like it is teenage behavior on steroids and the doses are getting larger by the minute.

Over the years, I have heard comments such as “This too will pass.” Will it? When? Or “You are building character.” Seriously? We have enough character in this house to write our own sitcom. We don’t need anymore. So now, after all those years of worrying about offending others; I no longer put up with those people who “give you the look” or make”kindly” suggestions on how you could improve your children’s behavior. To them I suggest: you are not fighting the daily battle so you have no say. Keep your thoughts to yourself. I don’t need them and neither does anyone else who is doing their best day in and day out.

Maybe someday things will get easier for our kids. There will be less bullying. There will be more services. Schools will do what is right and give kids what they need to reach their full potential instead of fighting parents every step of the way. But until that time, parents are here engaged in a daily battle for their kids rights and it is sometimes beyond exhausting.

So the next time you see a special needs family don’t judge. Just give them a smile or a kid word and know they are dealing with more than you will ever have to. Then go about your business thankful that your family is doing well.

 

 

 

So Be It …I Found Happiness

After all that has happened in my life I decided I needed to take a break from blogging. I needed to center myself and become really grounded so I could do the work that I needed to do.

The first thing I did (we did) was move. That said, the new house is in my name only and is not part of community property. I felt I needed to do this to protect myself and my children should B go off the rails again. It makes me feel secure and I am proud of myself for insisting on this safety measure.  I also put some other measures into place that has ensured that I am taking care of myself and kids.  All in all a good deal and I came out ahead of being divorced. A 30+ year marriage is not something I wanted to leave behind especially with the dynamics of our family. Besides I do still love the big lug and I know he loves me regardless of the past. Doesn’t mean that everything is hunky-dorie but it does mean we are both still trying and that is something!

Needless to say, moving involves a lot of change which all have managed fairly seamlessly and with a few tears. Change is hard but also it shows you what you are made of. It offers new possibilities and allows everyone to “reinvent” themselves to some extent. Honestly, reinventing your life reveals surprises that you never considered before and I welcome them with open arms. Come on world…show me what you’ve got!

I have been working hard with my therapist’s help to decide who I want to be and what I want from these coming “golden” years. Not there yet but getting close so it is time for me to plan. I feel stronger and more confident now and am able to go with the flow without anxiety. I am settling into myself and it feels wonderful like a warm sweater on a crisp fall day.

I am enjoying making this house my home and am happy that our old house just sold. Good riddance to the pain and sadness that I felt in that house.  I am infusing my life and likes into every corner of the soul of this place. I am putting in a garden again and even though the “dirt” is hardpan clay and rock upon rock, I find a wield a pickax with the best of them.

The wildlife is expansive. Deer take bread from our hands. Fox run amuck. Opposum waddle through. And the skunks reek havoc. The first week we were here, the dog, who was protecting our son, grabbed a skunk by its tail and shook it, twirled it around and around and then threw it against the stone wall. Needless to say the entire time he did this he was being sprayed. Then he was bitten by it after cornering it. We tried everything to get rid of the stench but even 5 weeks later there is a slight after-smell on our brave pooch.

I have been stringing up hummingbird feeders and I now have great friends who visit everyday. In the morning when I water, these mystical creatures stand behind the spray so now they are getting a daily shower. I never knew you could see joy on a hummingbird’s face but I swear you can!

Our relationship is much better. Sitting on the deck watching the sunrise over the mountains together drinking coffee helps. So does watching the boats ply the waters, laying in a two person hammock and taking time to explore this new land around us together. Less stress also has contributed to a greater sense of well-being.

One of the things that I have decided to do as an act of faith in my relationship is not blog about it anymore. I have so many more wonderful things to write about…so why beat and dead horse to death. I want more positive vibes in my life and in order to have them my mind has to be in a place that welcomes and honors them. Talking about my “almost divorce” only serves to fixate me on the past and does not allow for me to be open to a future full of promise. And at this point in my life I want to be open to everything that might come to me.

So I leave you with one of my feathered friends enjoying a shower. (Okay…I haven’t figured out how to do that yet! Some other time!)

Peace to all.

 

Saying YES To The Ring

I have been pondering for the past couple of days how to write this post. I have started it, deleted it and started it again many times. For at this point, what I am about to write is embarrassing, very confusing, and probably tiring to all who read my blog.  Frankly, I know that if this on-and-off again relationship was happening to a friend or my daughters I would say, “Get the fuck out! You deserve a man who wants all of you all of the time!”

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Yet, sometimes life is not that cut-and-dried no matter how hard we try to make it so. Over thirty years of marriage is a long time together. It is doubly hard when you have two boys with autism and who do not do well with change. Add to that three children who have already lost their original families and splitting up becomes fraught with minefields that just are not present in most families.

Now to tell you this particular story I have to take you back to October. It was then that B asked me what I wanted for Christmas. At that time I flippantly told him a commitment ring but frankly I thought that the possibility of receiving one was nil. Winning the lottery had better odds. And anyway, who doesn’t like a ring, right, so what was the harm in asking?

Fast forward to Christmas night. As we were winding down from the days festivities I told B I thought we should tell the kids tomorrow that we were separating. Tears came to B’s eyes and all of a sudden he called the kids down to do THE board. You see, every year on Christmas day and July 4th, we measure our kids to see how much they have grown (seems we will need a longer board for Andre next July.) Then, just as the kids were about to go upstairs B told them to wait and proceeded to say. “Hey, guys, there is one more present here and it is for your mom.”

With that, he walked over to his briefcase and pulled out a jewelry box and in it sat a woven silver and gold ring. Nothing elaborate (that is not who I am) and nothing too expensive (not me either). As I looked at the ring in shock he said something to me and the kids along the order of:

“The silver in this ring represents our Silver Anniversary (25th) while the gold represents striving toward our Gold Anniversary (50th). In this ring there are little breaks and holes that represent life and how during our lives we have to navigate through them, around them, and out of them; to get back on the path we have chosen. So I am giving your Mom this ring to show her that I am committed  and will continue to try working together to reach our Golden Anniversary.”

My first thought: Maybe he really does love me…and tears

My second thought: I am not sure I want this. Maybe it really is time to be out on my own.

My third thought: Why did he say this in front of the kids?

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Luckily, the next day was Tuesday, the day I see my therapist. She said:

“I’m confused.”

That made two of us.

So we talked about the conflicting feelings this brought up. About how for the last week every time we talked about leaving and splitting up our family we both cried. How our guts were both twisted in knots and how discussing dividing children, assets and animals was devastating. And that in this heartache we had gotten closer at least for the past few weeks but that it should be viewed as temporary.

In the end, I decided to accept the ring…for now. Instead of deluding myself into thinking this ring is a piece of jewelry that signifies B’s commitment to me for life; I have decided to view it as a day-to-day pledge until I decide otherwise.

Last night we went to our joint therapist and I asked for clarification regarding the ring, the commitment and why he said what he did in front of the kids.I will say that I received some very well thought through answers to my questions and that we both acknowledged that we have a long way to go to save this marriage if it is even possible.

At this point I have no real answers about life or the status of my marriage. What I do know is that every day we manage to make it is one more day our children have had a chance to grow older and more mature. It is one more day that we have successfully re-committed to working hard and to trying our best to listen to what is in the others heart and act accordingly. And it is one more day that we have attempted to let love win, move towards acceptance of both ourselves and the other, and its one more time that we have had the chance to try to find peace in a relationship that once had little.

Sometimes life is hard.

Sometimes life is isn’t.

And maybe, just maybe, given a little more time, the hard times will decrease and the good times will grow more frequent and blossom. And maybe someday I will realize good times and bad are just part of life and that is just the way it is and I won’t take it personally. And maybe, just maybe when the good times are abundant I will be able to rejoice in them knowing that I have done everything humanly possible to make them happen….with or without him.

 

 

 

Death Of My Marriage

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Yesterday was the day that we decided to meet for lunch to exchange lists regarding how we would like to divide our property, arrange child custody issues, and the like. We have decided to try to forego lawyers and see if we can work this out between the two of us.

We slept the night before holding hands and when we woke up B tells me, “Maybe we should go back to the belief that divorce is not an option,” so when we went to the restaurant for lunch I half expected that he might give me a piece of paper that said I DO NOT WANT A DIVORCE but he came fully prepared. I guess there is a little part of me that is still floating down DE-NILE. A part that does not want to enter the raging, swirling currents of divorce that could at any time capsize my raft and suck me under the torrents of tears that seem originate at the mouth of this river.

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These days I find tears are always threatening to leak out of my eyes at the most inopportune times. Paul came downstairs and found streaks from tears that I quickly wiped off my face but he saw them and asked what was wrong. Thank goodness I am still wearing this arm sling because it hides a multitude of emotional sins that are bubbling at my surface surprising me as the burst forth when least expected.

“I’m okay, sweetie. My shoulder is I just hurting me right now,” has become a great response when my sad and raw sentiments threaten to take me down to places in which I do not want my children to see or dwell.

After Christmas we will detonate their world by blowing up all they believed to be right and true to smithereens. They will never be the same and I am afraid that my two sons with autism will regress/rage as a way to handle the major changes that their lives will undergo. Change is something that is very hard for people with autism to endure.

I also feel terribly guilty. As adoptees my children have already lost the first parents, their first country, their culture and their language. We were suppose to be their Forever Family and we have let them down. Paul’s therapist tells us his biggest fear is ending up alone with no family and I am sure it will set off feelings of abandonment for him. This is one of the things I am finding it difficult to find peace about and find the compassion to offer forgivness towards my husband destroying our lives together.

Last night B and I got into bed. We held hands all night and we both cried on and off. It was a night in which sleep eluded us but sorrow did not as it swept us up in its tight grip and kept any sweet dreams at bay.

Today is a new day…I think I will go back to sleep.

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13 And Counting

I remember the first time I saw Gracie. She was sitting on her foster mother’s lap, so tiny and delicate, that she looked like a doll. She was a preemie so everything about her seemed fragile and small. I fell in love with her right then and there as I stared at the tiny 3×4 inch photo in my computer screen; engraving her sweet face on my heart forever. Truly, it was love at first sight and I was bound and determined that she would become our daughter. I thank my lucky stars that my dream came true because everyday with Gracie has been a delightful dream with a mixture of happiness, joy, and a pinch of awe thrown in for good measure. She truly is amazing!

Today Gracie turns thirteen. It is hard to believe that I will never again be raising a mere child. Instead, I am guiding young adults towards the time when they leave the nest…hopefully for good.

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Since Gracie is a now an official teenager, it means I have four teens living in my house. Maybe I should say co-existing, as war could erupt any minute when you are stepping through emotional teenage land mines which are scattered, undetected, here and there. Gracie assures me that she will not act like a teen but she is already rolling her eyes and using THAT tone of voice which indicates that somehow I have become the absolute dumbest person ever to live on this planet. Forget the 55+ years of experience, the college degrees and my affable personality…I am soon to be regulated to the status of something below pond scum.

While I am excited about someday becoming an empty nester (finger crossed) I do have to admit I miss those times when my children thought I could do no wrong, when they believed I was smarter than G*D, and when the little things I did brought them such pleasure. Those were simpler times though I didn’t recognize them as such. I often viewed them as chaotic with all the meltdowns that two children with autism could bring. But now… well, even the meltdowns don’t seem quite as bad as when I was in the midst of them and I can look back and be proud of how I handled some situations that would tax the patience of a saint. Not to say I handled them all well but I did GOOD ENOUGH and that is just fine with me at this point in the game.

Today is one of those momentous days. Time and perceptions will shift for both Gracie and I as the label of TEEN is applied like a gooey sticker to her soul. May we each grant the other grace and dignity in the coming years as she grows wiser and my brain cells shrink in number. May we create memories that sustain us and may we see the best in each other instead of the worst. For the teenage years are upon us…may we both survive them with patience and our sense of humor intact! And may Gracie happily survive the impact that autism has on a family and a sibling..she has done a remarkable job thus far.

Happy Birthday My Sweet, Talented, Gracious, Fun-Loving And Hard-Working Baby Girl! You are my Superhero!

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Dance

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Tonight I chaperoned a high school dance. The girls were glitzed and glammed, each out doing one another in the hair, makeup, and dress department.  The boys….well they were typical  teenage boys…nerdy, sweet, and 100 years behind the girls in just about every way imaginable. Most of them sat together and played video games while the girls stood around whispering to each other, laughing, and talking the talk. Meanwhile the boys who weren’t gaming, looked somewhat green around the gills, as if they were in intense pain trying to outdo one another to impress the girls with puffy-chest macho displays. Frankly, it’s a wonder that the two sexes ever come together at all.

After spending the first half of the evening checking the kids in (what do you mean you forgot your parental permission slip) I decided to head over to the dance floor in hopes picking up some new steps. Unfortunately, watching teenage boys move to the grove is like watching an elephant attempt to play the kazoo while dancing the lead in Swan Lake…there is NOTHING that can make it look pretty. Hips go one way while butts go another and I swear I saw a couple of heads do a 360 while sitting squarely on their shoulders. But the worst thing was the fact that not one of them could keep tempo to the music. It was like watching a little old man crossing the street using a walker…one speed only… with head bent and body stooped their bellies almost dragging on the ground. The ones still moving upright were sweating like Trump’s Communication Director when the President is in front of a microphone… never sure what ungodly thing might happen to destroy all their carefully laid plans.

Yet, with all the hormones on high alert things stayed sweaty but calm and everyone was having a good time, chaperones included. Something about the unchanging ways of nervous teens brings you back to your own school dance and you realize just how far you have come!

Of course, there is always some sort of drama. At our school dance this is the End Of The Night Song. It is the one and only slow dance that the deejay plays the entire night. Stomachs tense and butterflies alight and the girls begin to giggle as the time draws near. If the truth be told no one wants to dance the last dance and everyone is crushed if they don’t. As the first notes of Fade Into You began, I was surprised to feel a tap on my shoulder. When I turned around Paul was standing there.

“Would you like to dance, Mom?” he asked strong and sure in his choice.

“Me?” I asked.

“Sure. You’re the prettiest girl here.”

And as I stepped into his arms I knew without a doubt that all those years of hard work raising two children with autism had paid off.  I was obviously doing something right in this life and was finally reeping the rewards.

 

 

WE

 

We have built houses together

Planted a vineyard and gardens

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Raised six kids together

We have survived your mother

The death of parents

And your brother

We have moved

Numerous times for your career

Starting over again and again

Just knowing each other

In a city of a million faces

Finding comfort and love in that

And we have stuck together

Through so much adversity

Pain and sorrow

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We have traveled the world together

Had much happiness and joy

Done things as a couple

That brought us closer

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We have struggled

Raising two boys with autism

Put their needs ahead of our own

Done everything possible to give them

The best chance for a good life

So why it is now

After all the hard years

After all the time we have sweated and pushed

And fought the school system

After life and death

Hardships and pain

You want to abandon

Our future

And all the good times

We dreamed about

For so very long?

We’ve slogged through

The Rough Times

Taken so many wrong turns

But you don’t want to share

In the best that is to come…

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The walking along the beach

Holding hands

Visiting Grandchildren

Kayaking the rivers

And taking art classes

Working to save the river

And the seals

Old age sex

And wrinkles

And watching with a tender heart

Fingers intertwined

When one of us takes our last breath

Being there for the other

As one passes to the other side

To the unknown

The other left grieving and lonely

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We’ve been through the hard times

Why can’t we share the reward

Of all we worked for together?

When life is finally getting easier

Why should a future wife

Get all the benefits

Of our hard work?

I do not understand

I will never understand

And don’t expect me to…

Don’t ever expect me to!

 

 

Yesterday I had a private therapy session with our third and final marriage therapist. He was highly recommended by my therapist and she believes he can help because he does in depth therapy examining both partners pasts and seeing how they effect the dynamics of the relationship. He looks at attachment in childhood and how that influences attachment within the marriage.  I think he is a good fit but I was exhausted after our session. I felt like I had run a marathon and got run over by a truck at the end. Working on psychological/relationship issues is hard work if you are honest with yourself and others.

Recently I have been reading the book Hold Me Tight by Dr. Sue Johnson. The book jacket says ” Forget about learning how to argue better, making grand romantic gestures, or experimenting with new sexual positions. Instead, get to the emotional underpinnings of your relationship  be recognizing that you are emotionally attached to and dependent on your partner in much the same way that a child is on a parent for nurturing, soothing and protection.” It is an interesting book and I see B and my relationship on so many pages and it saddens me. But we both keep trying.

 

 

Thoughts on “Maybe” Divorce

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“As you become more attached to yourself you will become less attached to the outcome,” my therapist says with a smile.

Sometimes I wonder about this statement. Although it seems true enough as I continue this journey of the “maybe divorce” sometimes I wonder if this attaching to yourself, this honoring your self and your desires, really means at some point that you just dial back the caring…maybe you just begin to not care anymore because the fight for keeping your marriage has cost you too much personally. Your anxiety has increased to the point that everyday you wake up wondering “if this is the day.” And while once I believed that this thought might kill me, now, sometimes, I just wonder if it would be a relief for it is difficult to live with a man who no longer loves you the way he wants to and the sadness plays out like recessed shadows etched deep into his face.

I know when this began two years ago I felt like the world was coming to an end. It seemed as though my heart was being ripped out of my chest and I couldn’t sleep at night. After all this time my anxiety about divorce and what it would do to my children has decreased but is it because I am working really hard on integrating all aspects of myself and discovering more about who I am or is it because I am shutting down? Perhaps I see the train wreck in the distance, so I move away, because I don’t want to witness the carnage firsthand. I also don’t want to deal with the repercussions that it might have on two boys with autism and one with mental health issues much less the fact that four of my children are adopted and have already suffered so much loss in their young lives.

And so I continue to work on myself. To find corners of sunlight and to open the shutters wide to let the sunshine flood into my life. I work to make myself more aware of what I am doing and why I am reacting in the ways that I do. I am practicing ways of building up my resilience and incorporating peaceful ways of thinking as a habit that I can rely on to keep me centered. And I am trying to learn not to allow negative self-talk rule my head and my heart even though it still wants to.

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So if this work, if all this trying to find better ways of attaching to myself, is going to make me wiser, happier and more peaceful; I am all for it. For I am becoming a better me and I am finally doing all of this psychological work for greater self understanding of what makes me tick.  And if the “maybe” divorce comes to pass I think I will be in a much better position to retain my own dignity and grace during the process. And for me, that is what is important.

So be it.

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Rare Days

Some days just turn out better than you think they will. B went home with two of the kids while Andre stayed with me. This can be a bit of a challenge because basically Andre likes to be left alone…completely alone. Here we are at the ocean basking in the coolness of the water’s fresh breeze and Andre just wants to stay in his room all day. As a person with autism, finding a spot to feel comfortable is his main priority. Dealing with people and the newness of places and situations are the crux in his craw. I did manage to get him to walk along the cliffs one afternoon but he complained the entire time and made the trip somewhat miserable. He does that when he is doing something he doesn’t want to do…he makes it taxing and a chore in hopes that you will never ask him to do anything like that with you ever again.

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So today, I woke him up and told him we were going to a town about two hours away to take the train. He told me he didn’t want to go on the train but wanted to visit the museum. Unfortunately, we got there 10 minutes after the museum closed so instead we went to lunch, walked around town and went into some shops. It really wasn’t his kind of day but on the way home he said, ” I really had a good day with you Mom. Thank you.” Needless to say, I almost fainted for he rarely lets you know if he appreciates something much less tells you he enjoys your company. It was one of those rare moments that is so surprising and lovely that it suddenly feels as if life has picked you up and carried you away to Nirvana. Everything is right with the world and your place in it and after a weekend in which B talked separation, it was such a nice place to be.

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Later this evening I went down to the Lodge. It was one of the situations that you are trying to talk yourself into doing. Should I stay home or leave. Which will it be? The stay at home option almost won out but I eventually, after a heated debate with myself, chose to go to the bar. I took my drink outside to one of the comfy Adirondack chairs and parked myself in it to watch the sun disappear over the ocean while pinks, golds and yellows filled the sky. Flocks of pelicans flew in V formation past the cliffs while Sid the Great Blue Herron strutted his stuff. The temperature was perfect, the scenery divine and I had the place to myself…until a tall good-looking man about my age appeared out of nowhere. As it turned out he was from the local Buddhist temple complex and as we sat and talked I became “enlightened.” I have always strayed to the edge of Buddhist philosophy for years while attending Christian church at the behest of my husband putting my own religious convictions on the back burner. The talk that this gentleman and I had soothed my soul and it felt nice to be appreciated and admired by a nice man again.

Yes, some days take you by surprise. Today was one of those rare and glorious days and it felt just like a day when my garden is in full bloom!

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http://odiyan.org/

 

The War Of Words

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Recently, I have been thinking back to the days when the boys were young. Those were the days and many of them I would never like to repeat. They were stressful with meltdowns and words that took a cruel aim to the heart.

“I hate you” “I wish you were not my mom” “You’re a whiney little jerk” “Mom, he called me a butt.” Those kinds of things. Normal, yes, but the frequency at our house was 100 times what was normal. It was exhausting.

I remember at one point trying to get the boys to think before they said something. Hard to do when you are seven and in the heat of the moment. Hard for me to do now at 55+ and if I am honest; I have never been a model for saying quiet well-thought-out words.

During these early days of chaotic boyhood, a friend once  told me what she asked her kids when the War of Words was going on. I thought it was genius and wished I had done more of it as they grew up. She would ask her kids:

Is what you said kind?

Is what you said helpful?

Is what you said loving?

Often times just by asking these questions I found I could bring a temporary respite to all the chaos. It was a blessing. It taught my kids that words have meaning and repercussions too.

Recently, I was thinking back to those times and I decided that those questions of yesteryear were valuable not just for kids but for me too and I have been trying to be mindful before I speak by asking myself these questions before spouting off. I have also added two other questions to ask myself before responding to others:

Is what I am about to say true?

What is my motivation (honest) for saying what is on my mind?

Admittedly, it is hard for me to remember to ask myself these questions before talking. Often, I fall far short of where I would like to be. But usually, if I just pause before speaking, I can do a quick inventory in my head of the answers to these questions and decide whether my response is:

True

Honest

Loving

Kind

Helpful

 

If what I am about to say is not any of the above; I am trying to learn to shut my mouth and keep it that way. As a person who has shot from the hip most of her life this is a real learning experience for me. A challenge akin to climbing Mt. Everest. It is not easy. It takes a little bit of awareness and planning. But every time I succeed in being mindful I know I am getting to be one step closer to the person I want to be which gives me hope that maybe one day before I die I will master this ability to speak mindfully and to shut my mouth when needed. But somehow I suspect that it might take my deathbed to figure it all out if even then. Yet, I keep trying because I know for the sanity of all involved that when I am kind, loving, honest, helpful, and true I give the best of myself to those who deserve only the best of me.

Amen (so be it)

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