Topsy-Turvy Times

I got a phone call last Thursday afternoon, soon after I had gotten home from running errands.  I saw that it was from Barb’s cell phone.  Barb, who works at Aaron’s day group, often lets Aaron use her cell phone to call me.  Or Aaron often uses her cell phone even without permission so that he can call me and tell me something about his day, and then insist that Barb and I need to talk…and we laugh every time about that as we talk for a minute and make Aaron very happy.  So I was sure that this call was just another call from Aaron as I answered the phone.

But it wasn’t Aaron.  On the other end of the line was a staff from Paradigm who was using Barb’s phone to call and tell me that Aaron had fallen during a seizure.  Aaron was standing when he suddenly fell, seizing, and had hit the cement floor.  She said they were sure he would need stitches in his chin.  She was right.

I left for Paradigm as quickly as I could, thankful that our old Great Dane was beyond caring about the groceries left around the kitchen within his easy reach.  I walked in and found Aaron surrounded by Barb and the nurse, sitting in a chair with paper towels being held on his chin.  He was alert, ready to tell me all about his injury and ask if we were going to the doctor.

Which we did.  We went to the hospital nearest our house, out in the country, where the ER wait is next to nothing and the care is good.  The girl at check-in put an ID bracelet on Aaron’s arm…his arm on which he wears his watch, way up high.  There is plenty of room on that arm for both bracelet and watch, but Aaron doesn’t think so.  Immediately when we sat down in the waiting room, Aaron had me take off his watch.  I knew that here, as is true everywhere, Aaron’s way of doing things would be the way that things would be done, if he had any say in it at all.

He would sure enough need stitches, we were told.  No surprise there.  Aaron was taking it all in stride.  He doesn’t panic, thankfully, but he has questions during times like this, wanting to know about the process and the procedure…would he feel it…how many stitches would he need…and could he go home after this was all done.

When things were quieter, as we waited for the doctor and Aaron leaned his head back on the pillow, I looked at him and felt so sorry for all he goes through.  I couldn’t linger long there, though, in those thoughts because I knew I would cry and I knew that my crying would greatly bother Aaron.  He doesn’t have the emotional feelings about life that you and I have.  This is to his benefit, really.  But I do have those emotions, especially as his mother.  Looking at his split chin and his scuffed, swollen cheek just brought home to me the fact that life is hard for Aaron.

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Aaron doesn’t enjoy the pain he experienced.  He doesn’t like his seizures.  But Aaron also doesn’t complain about it or seem to feel at all sorry for himself.  That’s what I mean about the fact that he doesn’t display the emotional feelings about his life that others might do. He’s mostly concerned about the facts.  Will stitches hurt?  How many stitches will I have?  Can I go home afterwards?  What’s for supper?  When can I wear my watch again?

Not – why do I have to be the one with seizures?  Why can’t I drive like others do?  Why do I need so much help all the time?  Why is life unfair to me?

I’m SO thankful that Aaron doesn’t express those feelings…that they don’t even seem to be on his radar.  Once in a long while he’ll say something telling, though, like the time he asked me what went wrong with him.  Or is God mad at him and gave him seizures.  But those thoughts are verbalized very seldom.  Aaron is mostly about the here and now, and about living life in the routines that matter so much to him.  Predictability and sameness in his days are far more important to him than weightier matters such as the fairness of his life.

Gary and I are left with those weightier matters that are heavy on our hearts.  And I was feeling it as I watched Aaron flinch several times as he endured the stitches.  He told his Aunt Sandra about it that night as they talked on the phone.

“That doctor put on the numbing medicine and then he put on the stitches!” Aaron told her.   Somehow he can always make me smile.

But by the end of the evening, as I told my friend Sarah, I just wanted to crawl off in a corner and have a good cry.  That wasn’t to be, though.  As soon as Aaron got in bed later that night, within five seconds after I left his room, he had another seizure.  They happen so quickly!  Thankfully he was laying down in bed for this one, safe from falls.  I was in bed myself as soon as I could after that, very tired…too tired to take time to cry.

The next morning I sat at my quiet time desk, early, wondering what God would show me from His word.  He didn’t disappoint me.  He never does.  I’m reading through II Samuel – again – using a devotional commentary written by Dale Ralph Davis.  In chapter 7, God was explaining to David why he would not be the one to build Him a temple.  And this phrase, read so many times before, jumped out at me as I read it…and then read what Davis had to say.

God was speaking: “In all the places where I have travelled around with all the sons of Israel…”

God lived in a tent among His people as they wandered in the wilderness.  As Davis says, “Do you see what God is saying about Himself?  He is the God Who travels with His people in all their topsy-turvy, here-and-there journeys and wanderings.”

The God of the universe travelled with His people while they spent years in the wilderness…years spent there because of their sin and disobedience.  Davis continued: “That is only a pale glimpse of the condescension of the covenant God, the God Who will not enjoy rest until He gives His people rest , the God Who stoops down to share the hardships of His people, the God Who is not ashamed to say He has been ‘travelling around in a tent’ with them.  See how close He is to you!”

On my tired, sad morning as I hurt for Aaron once again, I was overwhelmed with joy for what God had shown me.  God never lets me down, especially when I need Him the most!  I don’t deserve His kindness to me but I sure did thank Him for His hand on my shoulder that moment…His arm around me and His promise to be with me so fresh in my life as I sat at my desk.

His presence doesn’t necessarily take away all pain or grief.  But He sure does pour comfort over me.  And the certainty that He has a purpose for all that goes on with Aaron fills me with peace.

It’s not a peace based on my feelings.  It’s a peace based on my God.

I felt that same peace as we realized over the weekend that Aaron had probably damaged a back molar during his fall.  I took him to our dentist yesterday, who confirmed that the tooth was broken beyond repair.  Off we went to an oral surgeon, who thankfully was able to extract the tooth right away.  And there I sat once again, watching Aaron sit in another exam room for yet another procedure.  I listened to his questions that he asked the dental staff and that he asked me.  I watched his eyes focus an all the items in the room, processing each one in the way that he always does.  I hurt for his fear that he expressed.

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But I also thought of my travelling God, and how He was right there with us in that room.  I was thankful for that, SO much!  Thankful, too, for the sweet nurse who told me about her young son with seizures, and how we talked about prayer and our faithful God.

When all was done, Aaron was done…ready to lead the way out the door.  Ready for his large chocolate milkshake from Sonic – with NO straw!  Ready for his mashed potatoes and a few deviled eggs for supper.  Very ready to show Dad his tooth and the roots, placed in the little pink tooth box that he can carry around and proudly show to everyone.

Ready to take a walk, in his pajamas, with Gary and Jackson.

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Ready to bring me his treasure that he had found, and that Gary had explained to him.

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Ready to touch my heart with his lopsided, numb grin as he showed me the dandelion seeds.

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Ready to be used by God once again to show me so much, in ways he doesn’t even know.

A Gift on Atha’s Birthday

Today is my friend Atha’s birthday.  It should be a very happy day of celebrating for Atha, her family, and for me.  Atha and I should be going out to lunch one day this week to celebrate our birthdays that are close together, paying for each other’s lunch while we laugh and while we share some heart-to-heart time.  But none of this will be happening today, or this week, or ever again.  At least not happening with Atha present.  Atha is in heaven now, and has been for nearly three months.

Is that even possible?

I wrote about my dear friend Atha after her memorial service.  Here’s the link in case you missed it and would like to know her better.  This Is My Friend  She was……she is……so worth knowing.  I can’t believe she’s not here now.

I still hear her voice clearly in my head, and her wonderful laughter.  I had lunch today with Atha’s daughter, Sarah, and I saw Atha in Sarah’s movements……the way Sarah held up her index finger as she talked……the way she opened her eyes so wide and moved her head…….her laughter.

I have so much I’d like to tell Atha.  I deeply miss our conversations, whether in person or more often, on the phone.  She was my best porch buddy, where I would sit as we chatted on the phone……my iced tea by my side……until the mosquitoes would drive me inside.

I still hear her words of advice, mixed with southern charm and sometimes a dash of sarcasm, depending on the subject.  I hear her words of comfort during the hard times, and her words mixed with the fire of resolve over injustices or wrong that either of us were enduring.

And I will always hear, and never forget, one of the most impacting things she…..or anyone……ever said to me.

“You are established in your purpose, Patty,” she said to me one day.  I wrote about that, too.   My Purpose

I will carry that with me always.

I’ve been missing her more the past few days, probably because of her birthday.  The special days are always hardest.  This past Saturday evening, for some reason, I just wanted so much to go sit out on my porch and talk to Atha.  I was so sad, and the tears came.  So I went up to my table that holds my Bible and I sat down, opening the pages, and reading here and reading there as I asked the Lord to give me a word that I needed.

I ended up in Isaiah 46.  God was speaking to Israel but principles are there for us as well.  Listen to verses 9-10:

Remember the former things long past, For I am God, and there is no other.  I am God and there is no one like Me, declaring the end from the beginning, and from ancient times things which have not been done, saying, ‘My purpose will be established, and I will accomplish all My good pleasure.’

I looked at that after reading it, and I said to myself, “Wait.  What did that just say?”

So I read it again.  Yes, there it was!  Atha’s words to me were spoken by God to me as well!!

Atha said, “You are established in your purpose.”

God said, “My purpose will be established.”

Isn’t that just awesome and amazing?!!

God has a purpose, and His purpose WILL be established.  He WILL accomplish all of His good pleasure.  He will accomplish His plan, according to His purpose that He has established……and in which He IS established.

And I wanted to say, “Well, Atha……looky there!!”…….to borrow an old childhood word.  Looky at that, would you?

Wasn’t God SO extra good and loving to show me those verses when I was so sad?

So I thanked God for reminding me of Who He is, and that He has a purpose even for the pain.  I don’t understand it……I may not even at this point really like it…..but His purpose will be established.   It will be accomplished, whether I see it or understand it this side of heaven or not.

Verses like this become memorial stones to me, so beside that verse I wrote, “Remembering Atha, June 2016.”

Atha would absolutely love this.  I wonder if God told her how He leaned down and spoke to me on Saturday evening, using her words that are His words.

It was just all wrapped up together like a beautiful package, perfect for this birthday week.

Happy Birthday, Atha.  I miss you, I love you, and I am so happy that you are…..and always will be…..my friend, Atha.

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What Dad Taught Me in Death

 

I’ve heard it said that our parents are the most important teachers that we will ever have.  I would agree with that statement, for as we grow we are constantly watching our parents……..listening and absorbing and learning through their words and deeds.  Hopefully the lessons learned are good ones.  My parents were very beneficial in my life in more ways than I can count.  Yet some of the lessons that I treasure the most are the lessons I learned as I watched my dad live the last month of his life on earth.  What were some of those lessons?
 
1.  Know When to Ask For Help
 
Dad was diagnosed with lung cancer in 2000, and with liver cancer in 2004.   In September of 2008, dad was put into Hospice care.  We knew that no more could be done for him medically, so as he declined I told him and Mom to let me know when they wanted me to come and help them.  I got that call on November 2, and in a few days I was on a plane headed home.  I was fearful of what I would find and how I would handle all the emotion of what was ahead, but I was very thankful that I had the opportunity to go and help my dear parents.
 
2.  Don’t Stop Thinking of Others
 
Dad had always been very kind and sweet to others, and loved reaching out to help people.  This continued even as he deteriorated.  I quickly learned that the real reason he had wanted me to come was that he was  worried about Mom.  He knew that she was physically more frail than she had ever been………..emotionally drained………and that she was showing signs of progressing dementia.  He was more concerned about me helping her than of me assisting him.  In fact, when I first arrived he resisted my help in several ways.  I understood this about him……his independence and his desire to maintain his privacy.   She was his first concern, even though he knew he was losing his fight to live.
 
 Later, when he finally allowed Jan and I to assist with his toileting needs, I found him crying one day as he sat in his wheelchair.  I knelt down and asked him what was wrong.  Through his tears, he told me that he was sorry to have to make us help him in that way.  I was so amazed at him…….at his selflessness and his kindness.  I assumed he was crying from embarrassment, but his tears were not for him…….they were for us.  He told me that he was sorry that he had to make us do this……..sorry for any embarrassment that we might be feeling, but not feeling sorry for himself.  I have never seen such love and concern as I saw in him at that precious moment. 
 
3.  Keep Your Routine
 
For as long as he could, Dad continued to get up early in the morning and to stay up as long as he could.  He needed help but he did not want to lay in bed all day.  He wanted to eat at the kitchen table, sitting there in his wheelchair and eating oh so slowly, often with his head bowed and his eyes closing.  Mom and I would speak to him, and he would perk up, slowly raising his head.  He would manage another few bites and some soft, slow conversation before slowly nodding off again.  Yet he was determined to keep going and to keep his schedule for as long as he could.
 
He also wanted to read the mail and the newspaper every day even though his eyesight was failing.  It was hard to see him struggling to read but he was not to be deterred.  He finally had Mom make an appointment with his eye doctor, even as we knew that this doctor visit would be impossible.  We didn’t tell him that, though…….we wouldn’t take away that hope that he had.
 
We would watch Little House on the Prairie videos at night.  Dad wanted to still be in charge of the remote – just like a man!  He would slowly push the volume button but he had a hard time controlling his movements, so the volume would shoot up sky high.  As he tried to correct it, the volume would go to mute.  He was frustrated but finally relinquished the remote to me and Mom. 
4.  Pay Attention to Details
 
When I first got to their home, Dad was managing to walk with his walker.   He was very, very slow…….walking with me by his side, ready to steady him when he faltered or wobbled.  Dad was always very meticulous about things and this trait continued.  He wanted his sweater on and liked it when the sweater matched his pajamas.  As he would slowly walk from room to room, he would sometimes stop and just stare down at the floor or the carpet.  Then he would ask what that spot was on the carpet, and as I looked down, sure enough I would see a bit of a leaf or a string.  I would laugh as I bent over and picked it up, and Dad would smile as I teased him about being so picky.  Yet those small details were still very important to him.  
 
5.  Mind Your Manners
 
Dad was always polite and proper, never crude or inappropriate.  I guess that’s one reason why the five of us children enjoyed teasing him.  He was great fun but he did have boundaries.  One morning as we ate breakfast, Mom……….well………..she had some gas.  She laughed and said,  “I farted!”   Dad very slowly raised his head, looked at her, and softly said,  “Passed……..gas.”   Mom and I cracked up, and Dad gently smiled – satisfied at his correction and realizing the humor of it.
 
He was always careful to say thank you when any of us helped him in any way.  Close to the end, after I had gone back to Kansas, Jan was rubbing his back and very quietly he said to her, “Do…..not…..do…..that.   Please.”   He didn’t let his situation rob him of his manners.
 
6.  Keep a Sense of Humor
 
Dad loved to laugh and smile.  He was a delight as he loved to tease in a kind way, and also was often the willing recipient of much good-natured ribbing from all of us.  Shortly after my arrival, we had to get him a hospital bed.  He was not happy about this and was especially unhappy about having the bed rail put up at night.  We had to insist, though, and he finally resigned himself to this fact.  One night as I raised the rail, he told me, “Don’t put that rail up.  I’ll remember you in the hereafter!”  And then when I walked in his room to help him out of bed in the mornings, he would greet me by calling me his prison guard or the great emancipator or other funny names having to do with my control over his freedom. 
 
One day he jokingly said, “I’m sorry for every mean thing I’ve ever said about you.  I have to stay on your good side!”  And when we bought him silly pajama pants he went along with the fun.  One day when Jan and I teasingly asked him which of us was his favorite, he immediately looked straight at his hospice nurse, Amy.  Every day there was humor from this wonderful man, even as he was suffering.
 
7.  Show Love
 
Mom and Dad were very close, especially after they both retired.  They were hardly ever apart.  When Dad had to start using the hospital bed, it was the first time in nearly 60 years of marriage that they had slept in separate beds.  We pushed his bed very close to their bed, and at night Mom would lay there with her hand between the rails of Dad’s bed.  They held hands or she would rest her hand on his arm…….still together and still close despite this circumstance. 
 
There were times that I would be holding Dad up as he stood, and there would be a pause.  I would turn to look and find that he had put his frail, skinny arm around Mom’s shoulders and was pulling her close to him.  I felt like an intruder to this moment of intimacy, and the tears would spill down my cheeks as they embraced.
 
In the midst of these days, there were times of stress.  One day Mom and Dad were facing one of those frustrating moments.  I waited in the living room until it was time for me to help him to the couch.  I sat there and laid my head on his shoulder, telling him I was sorry for how hard it was at that moment.  He smiled his sweet smile, very slowly raised his head, and said, “Smooth………it………over.”   I’ll never forget those wise words. 
 
8.  Always Pray
 
Dad continued to pray for as long as he could.  His walk with the Lord all of his life was of primary importance to him, and that never diminished even as he was weak and full of pain.  One of my dearest memories of my time there was of his quiet, halting prayers before meals.  He continued to lead us in prayer for as long as he was able.  He rarely asked anything for himself, but thanked the Lord and then made requests for others.  When my niece, Ruth, had a tumor removed from her spine, Dad was heart broken for her.  He would always pray for Ruth, sometimes with tears.  Always thinking of others………..that was my Dad.
 
9.  Be Ready to Go

 

Dad was afraid to die.  This fact puzzled me at times, although I do understand.  It’s just that Dad had such a close walk with the Lord and I was surprised at his fear.  However, as we talked I realized that he was afraid of leaving Mom…….both for her sake and for his………both of them without the other for the first time ever.  He was looking forward to seeing Jesus, but wondering what he would say to his Savior.  Dad liked having everything thought out and orderly, and this dying process was anything but orderly and known. 
 
Finally one night, John spent some time talking alone with Dad…….assuring him of things about heaven and answering his questions.  This comforted Dad greatly, and later that night Dad shared these things with Mom and me.   Our hospice nurse had told us that often a person needs to be released to die, so that night through our tears we told Dad that it was all right for him to go on to heaven……….that we would be fine and most important, Mom would be well taken care of.
 
 
A few days after that conversation, on Dec. 4, I tucked Dad into his bed at night.  I adjusted his oxygen and did  all the other things I had done so many times over that past month as I got him settled.  But this time was different.  I was leaving early the next morning to fly back to Kansas and to my family.  Dad knew it was time for me to go, but I think he was afraid.  Jan and John would be there, but I had been with him full-time for a month and he had come to depend on that.
 
As I leaned down to tell him good night, the tears fell.  I kissed him, and then he asked me if I would come back after Christmas.  I assured him that I would, even as I knew that it was unlikely he would be there at Christmas.  One of the hardest things I’ve ever done was to kiss him that last time and walk out of his room.  I went home to Kansas the next day, and Dad went home to heaven five days later.  Oh, we miss him! 
 
But I am ever so thankful for that month with him and with Mom, and for so many special memories shared and lessons learned.  What a hope we all have, too, as we know that we’ll all be together in heaven one day.  I didn’t get to see Dad again as I assured him I would, but I do have the assurance that I WILL see him again………..for eternity.
 
And I want to thank him for all that he taught me in life, but especially for what he taught me in death.
            

Matters of the Heart

Aaron is now 27 years old.  I know that he is a man, a grown man, and that fact is very hard to imagine.  28 years ago Gary and I were anxiously awaiting the birth of our first child.  I had made all the yellow gingham nursery curtains, bumper pads, changing table covers, and decorated with yellow, fluffy duck decorations.  Everything was as I wanted it.  And even though I went into labor 3 weeks early and Gary had just changed out of his flight suit when he rushed me to the hospital, we were really ready – for the most part – or so we thought.  What new parents can ever be really ready for the responsibility that awaits them?  And what new parents can ever comprehend the depth of love that washes over you when you first hold that little part of both of you?  Aaron was so little and perfect and beautiful.  And my radar screen was still showing sunny weather with not a storm in sight.

When Aaron had his first seizure and was diagnosed with Epilepsy, and than years later was diagnosed with Autism, we were completely unprepared.  We never, ever expected such a thing to happen to us.  To someone else, yes.  Someone we would read about in a magazine, or hear about from a friend, or receive a prayer request for at church.  The reality of this event in our lives with our Aaron was just so unexpected and unwelcome.  And as I said earlier, when I got home from the hospital after his Epilepsy diagnosis, I cried my heart out with tears for Aaron, for us, and with pleas to God for His grace and strength.

I had a choice to make and I chose to focus on what I KNOW.  And what I know is that God is sovereign.  God is in control and none of these events surprised Him or confused Him.  God loves me and God loves Gary, and God certainly loves Aaron.  I cannot and will not ever try to explain the ways of God.  There is no unfairness with God, I do know that.  So instead of wasting time and energy trying to explain the why of our situation, my choice was to trust the Who in our lives.  And that would be God.  I know from my walk with Him for all these years and from reading His Word, Who He is.  I know that His sovereign plan is best even when He doesn’t choose to reveal it all to me.  I trust Him and I love Him and I have found Him always faithful.  Those things I know.

While in Leavenworth, God gave me Psalm 18:29:  “For by You I can run upon a troop; And by my God I can leap over a wall.”  I just love this verse!  It’s my theme verse in so many ways.  Oh, the walls that I’ve run into in our life with Aaron!  I’ve shared many of them in the past few posts.  So many times I’ve run into walls, beat my head against walls, beat my fists on the walls, tried to climb walls with my own strength – but by my God, I can LEAP over the walls.  What a promise, fulfilled in so many different ways in so many different situations.  So I also know that with God, I’m a wall leaper!

But there are also some things I feel, and feel deeply.  These feelings come from within my mother heart.  I think of my heart as having various doors that open when needed.  Doors of love, of wisdom, of encouragement, of laughter, and on and on.  But there is a door that I rarely open because it is too painful.  That is the door of my regrets and wishes for Aaron.  I do not live in regret or in unfulfilled wishes for Aaron, but occasionally those thoughts slip in or that reality hits me in my heart.  Once after Aaron started going to the job skills school, he came home one day and said, “Mom, I’ve noticed something.  All the kids at that school have problems.  What are my problems?”  I struggled not to cry as I tried to talk to him about Epilepsy and Autism.  He was satisfied and seemingly unconcerned, but I knew he was pondering these issues very personally now.  And it broke my heart.  I remember when Andrew got his license and later came home with his used truck.  We had purposely not made this a big deal because Aaron was often jealous of Andrew’s life.  But Aaron looked outside and saw the truck, so he asked if that was Andrew’s.  I said yes and Aaron said, “I wish I could drive.”  Little glimpses like that into his heart made that door of my heart start coming open.  There are times for tears, but not time to wonder about what could have been or might have been.  Living in defeat is not God’s plan for me or for Aaron.

And there are so many reasons to be thankful.  Gary led Aaron to the Lord when he was 6 years old.  Aaron has that understanding.  He can walk, and run, and see, and talk (can he ever!).  Things could be so much worse.  He can read and understand, and even though he can be sooooooo irritating sometimes, he also makes us laugh – a lot!

In closing I want to post a piece that has always spoken deeply to me and I hope it will to you, as well.

 

“WELCOME TO HOLLAND”

By Emily Perl Kingsley, 1987. All rights reserved.

 

I am often asked to describe the experience of raising a child with a disability- to try to

 

help people who have not shared that unique experience to understand it, to imagine how it

 

would feel. It’s like this………..

 

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans.  The Coliseum.
The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in
Italian.  It’s all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.
Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say.  “What do you mean, Holland??  I signed up for Italy!  I’m supposed to be in
Italy.  All my life I’ve dreamed of going to Italy!”
But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you
will meet a whole new group of people you would never have met.  It’s just a different place.  It’s
slower-paced than Italy, less flashy than Italy.  But after you’ve been there for awhile and you catch
your breath, you look around…………and you begin to notice that Holland has windmills and Holland
has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy………..and they’re all bragging about
what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where
I was supposed to go.  That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away………because the loss of that dream is a very,
very significant loss.
But………if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to
enjoy the very special, the very lovely things………….about Holland.

 

 

 

 

 

 

 

 

 

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