I looked across a dining table at the mother of my older son’s new roommate. I remember when she learned she was expecting him and how she wept and worried because it was just a few months since she’d had her previous child. She and her husband were only recently out of school and she wondered at the complexity and difficulty of introducing this third child to the mix. How wonderful it would have been if someone could have told that girl how much fun this boy would bring to her life? If she could have known what an absolute joy he would be to her, it would have lifted some of that burden.

It brought peace to me to see the results of her years of work — the realization of hopes and dreams which, at one time, were too distant even to be considered. It reminded me of a story that the apostle Jeffrey R. Holland shared in 1999 about life turning out okay after discouraging times…

Times like when I thought my left arm would become completely useless to me from wrist and hand stingers caused by trying to control the legs of an uncooperative 10-year-old for diaper changes. Times driving kitty corner across town in a rush to take my Down syndrome son to school with him protesting loudly and usually taking off his clothes along the way. I can still hear my older son’s desperate, “Hurry, Mom! Make him go!” when I’d have redress his younger brother in the parking lot. Times like the daily wrenching and twisting as I walked my son up to the classroom door. Then, once I touched that knob, he would straighten up and walk in as calm as you could ever imagine! The teachers would have that look on their faces that said, “Why can’t you ever get here on time?” I would just smile and retreat again quietly, then dash back through town the other direction to try to get my older son to his school on time.

I can picture myself making that drive day after day, saying, “Tell your teacher it’s my fault you’re late, son,” and feeling so worn out at only 8:15 in the morning. I had hope then that one day things would get better, but I had no way of knowing if they would.

Turns out that there are hills and valleys in life. I am glad that this difficult chapter in our lives did come to an end. I’m glad that my older son holds no hard feelings and is now as dear and tender with his brother as anyone could ever hope for.

All of us have experiences when it seems we might not have the strength to keep going. Looking back now, what would we say to our “selves of the past” if we could? I think I’d say to that earlier me (or that my friend might say to earlier her) the same thing Elder Holland says in his story. So when I have a rough day now, I try to think of the future me and imagine her encouraging me the same way. His words give me strength:

“Thirty years ago last month, a little family set out to cross the United States to attend graduate school—no money, an old car, every earthly possession they owned packed into less than half the space of the smallest U-Haul trailer available. Bidding their apprehensive parents farewell, they drove exactly 34 miles up the highway, at which point their beleaguered car erupted.

 

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Pulling off the freeway. . . the young father surveyed the steam . . . then left his trusting wife and two innocent children–the youngest just three months old–to wait in the car while he walked the three miles or so [to where] water was secured . . . and a very kind citizen offered a drive back to the stranded family. The car was attended to and slowly–very slowly–driven back . . . for inspection . . .

 

After more than two hours of checking and rechecking, no immediate problem could be detected, so once again the journey was begun. In exactly the same amount of elapsed time at exactly the same location on that highway with exactly the same pyrotechnics from under the hood, the car exploded again. . .

 

Now feeling more foolish than angry, the chagrined young father once more left his trusting loved ones and started the long walk for help . . . This time the man providing the water said, “Either you or that fellow who looks just like you ought to get a new radiator for that car.” For the second time a kind neighbor offered a lift back to the same automobile and its anxious little occupants. . .

 

“How far have you come?” he said. “Thirty-four miles,” I answered. “How much farther do you have to go?” “Twenty-six hundred miles,” I said. . .

 

Just two weeks ago this weekend, I drove by that exact spot . . . That same beautiful and loyal wife, my dearest friend and greatest supporter for all these years, was curled up asleep in the seat beside me. The two children in the story, and the little brother who later joined them, have long since grown up . . . The automobile we were driving this time was modest but very pleasant and very safe. In fact, except for me and my lovely Pat . . . nothing of that moment two weeks ago was even remotely like the distressing circumstances of three decades earlier.

 

Yet in my mind’s eye, for just an instant, I thought perhaps I saw on that side road an old car with a devoted young wife and two little children making the best of a bad situation there. Just ahead of them I imagined that I saw a young fellow walking . . . with plenty of distance still ahead of him. His shoulders seemed to be slumping a little, the weight of a young father’s fear evident in his pace. In the scriptural phrase his hands did seem to “hang down.”. . . In that imaginary instant, I couldn’t help calling out to him: “Don’t give up, boy. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead–a lot of it–30 years of it now, and still counting. You keep your chin up. It will be all right in the end. Trust God and believe in good things to come.” (Jeffrey R. Holland, “An High Priest of Good Things to Come,” October 1999).

I literally say to myself sometimes, “Don’t give up, Jane. Don’t you quit.” When things look dark, I remind myself that these words could have helped me get through times past, so I let them push me through today, trusting that I will survive. I believe I will find the same results in the unknown future as have truly already come from my anxious and blundering past: “There is happiness ahead—a lot of it . . .”

This post was originally published in September 2014. Minor changes have been made.

Jane Thurston

I’ve thought about that directive so many times over the years.  I felt it put a lot of pressure on me because – shouldn’t an advocate know what they are talking about?  I went to all the meetings.  I heard what the experts said.  But it was so often in such jargon language that by the time they got to where they wanted my assent or opinion, I might be only barely able to ask an intelligent question.  Let alone weigh alternatives or devise an optimal plan.  Then I’d think “but I have to be his advocate”, so I’d make my best guess and keep moving.

I understood the word “advocate” to mean that I should firmly designate which out of many paths was appropriate for my son and then make sure he was allowed to go down it.  I had no training to qualify me to choose teachers or curricula.  I wasn’t able to predict how any given program would affect him.  With all of their background and testing, wasn’t there somebody who could just tell me what to do?  That was the trouble.  There were too many people and too many possibilities of what to do.  

I hardly feel any more educated today about “the system” or available programs established for handicapped children than I did the day I started learning 21 years ago.  I can say that they are innumerable and it is impossible to personally check out every one.  I’ve taken word of mouth from moms and recommendations from experts.  Each time using as my baseline what I thought my son would enjoy.  

I didn’t tell anybody this because I thought they expected me to be using facts, figures and research to make my decisions. But facts, figures and research can make your head spin!  I’d look at what they were going to be doing and just ask myself if he would enjoy doing that.  If so, we’re in.  If not, we’re out.  Not very scientific, so I kept my method secret and merely affected an authoritative air once I’d made my choice.

It wasn’t until high school that an unwitting teacher validated that my way of calculating was okay.  

Joey had been in high school a couple of years when we were once again faced with planning for his future activities.  I knew he would enjoy being a part of the school choir but, given that he doesn’t speak in public, I didn’t think he would be likely to sing either.  And if he did, to what level of success?  Enrollment in the choir class was normally by audition only.  I wasn’t at all sure that the teacher would welcome him.  

Nonetheless as his current teacher and I were going through things I haltingly mentioned choir as an option.  He looked at me with surprise and said “Choir??”  Of course his response was based on facts, figures and observation.  He had only rarely heard any sound come out of my boy’s mouth in the two years he’d been teaching him.  It makes sense that choir would never have crossed his mind.  

I wasn’t bold, but with my little “advocate” commission pushing me on, I ventured: “Yea, he’d think it was fun.”  Instantly he exclaimed: “Well if Joey would think it’s fun, let’s do it!”  Now I was the one surprised . . . was it as simple as that for the teacher too?  

Had I been letting the evaluations and reports drive me into hiding for no reason?  Is that all the data and studies came down to . . . just fancy ways of analyzing what a person might enjoy?  Because I can do that for my son!  

I may not know the percentage of Down syndrome folks who meet certain levels of achievement, or what milestones appear at various IQ levels.  I don’t even know the developmental stage at which a person should be able to hop on one foot for however many number of times.  But I do know what will engage my son’s mind, and I do know what makes him feel happy or proud.

Joey had such a terrific time in that choir!  He felt very much “one of the kids”.  The other students were tremendous to him, and it thrilled him to perform where he’d seen his brother and sister participate before him.  These are things the teacher couldn’t have known.  He wasn’t aware that Joey already knew a number of other choir members.  He wouldn’t have known that he’d heard the applause his siblings experienced.  No amount of clinical assessments could have told him that it would be bliss for Joey to be under the lights on stage with the group rather than be intimidating.  

There are no profiles and no evaluations that take into account the total world a child lives in.  That’s something only moms and dads can offer.  So, come to find out, without any book-learnin’ I had been able to be my son’s best advocate all along. I guess I didn’t know when I’d been up late at night lo these many years that I was studying, but apparently I was.  And life is an excellent teacher.  

We’ve actually taken him out of school now.  The paperwork given to me at the latest meeting showed that he had been sleeping 50% percent of the school day, either at his desk or on the floor.  I said “If he’s asleep half the day – he’s bored!” Truthfully, that’s something this teacher couldn’t have known either.  Joey wouldn’t have told him, nor would he have made trouble behaviorally.  I’d totally expect that if bored, he’d simply check out.  And he had been.

My husband and I considered long and hard before making the decision.  At last concluding that the program wasn’t a fit, so we pulled him.  Let me state here that I’ve taken heat for that verdict from some whom we’ve known for decades.  But I no longer search for a shadow in which to deliberate while making up my mind about my son’s care.  When one woman let loose with her opinion, shook her head at me and said “I’m chastising you!”  Without hesitation, I gave it right back to her, saying with a smile, “Oh, I know you are!  But I don’t have to justify myself to you.”

I’ve come a long way baby!  That’s probably good because we’ve still got a long way to go.  There’ll be many more programs and many more decisions before we’re through.  

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For now, this is like being on a sweet vacation.  We spend our days doing just what we want to do, which includes a considerable amount of Pokémon Go and his usual prodigious artwork.  No deadlines, no bus schedules, and my son is supremely contented and happy.  

My Down syndrome son’s emotional and mental capacities are at about age 4-5.  Possibly what I was looking for in his education would be different if that were different.  Maybe I’d have made decisions that are more predictable to others.  But he’s not, and I didn’t.  Each advocate has to evaluate the data for him or herself.  But take it from me: Moms can know best!  

Jane Thurston

How true is this of people who have no inhibitions?  who feel no social pressure?  who just wake up each morning to a whole blank-slate of a day and begin anew?  

My Down syndrome son has no long-term goals.  He carries no baggage from yesterday.  Each and every moment is just born for itself.  

I mean, why wear a straw hat on top of your cowboy hat?  I don’t know.  

Joey and his double hat.

Why insist on drinking one glass of water and one glass of milk at the same time with two different straws?  No idea.

Drinking milk and water at the same time.

Why walk the bases backwards?  

Joey walking the bases backward.

Why be so proud of yourself simply for trying on funky sunglasses?  

Joey and some awesome sun glasses.

Why make a sculpture out of paper cups and straws and tape it to the floor?

Joey’s creative sculpture.

None of these things make any real sense to me at all.  They are just the brain flowers of my son.  

Is there often someone who’ll pause while shopping just to get in 8-10 seconds for a shave?  Not usually.

But a person who is free to express every thought and who is apparently pretty creative, is likely to do any of those things.  And this person will never look over their shoulder to see if anyone else approves. For this person, every morning is a springtime of the mind.  

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And to my great delight I never know what will grow out of it.

The sun comes up every morning, and we choose what to do with our hours.  Seems to me that despite disabilities or differences each individual on earth is equally as magnificent and intricate as is every flower or stem.  Equally as worthy of observation and regard.  

My springtime wish for you is that you will find a way today to blossom with the freedom that my Down syndrome son feels and enjoy your time making the world an imaginative and beautiful place!

Jane Thurston

Joey trying to make a quick get away.

At 21 my son is physically too big now to lose track of for the most part.  And thankfully, he doesn’t dash off into thin air at random the way he used to.  These days if he goes it’s because he’s got another plan.

For example:  One morning I got a text from his teacher.  They were on a field trip to the local shopping mall doing a scavenger hunt.  While the group was gathered around a kiosk map to determine which was their next stop, Joey had disappeared.  

The teacher was asking if I knew where he might have chosen to go.  A flurry of texts ensued and persons sent here and there at my suggestion looking for him, until the teacher sent back that they’d arrived at their next stop and Joey was there waiting for them.  

Oh, I should have known!  That should have been my first guess.  He’s always thinking.  He’d figured out the answer and went on his way.  I’m sure if he could understand everyone’s concern he would have been incredulous, thinking: “Isn’t this where I was supposed to go?”  Well, yes, in fact, it was.  Because he doesn’t talk to them, the teachers can’t really be expected to recognize that he regularly thinks one step ahead . . . but I should have.  I had to smile.  He is a clever boy.  We often don’t give him credit for all he can do.

Joey in his new glasses, looking good.

Another turn at being smarter than I am exhibited itself yesterday when we visited a big-box store.  I stood him in a certain spot where I could see him and told him to stay right there by the shopping basket while I got in line to get a drink a distance away.  He did stand there quite a while but then I noticed him slowly pushing the basket forward. He passed two or three aisles, pausing and looking down each one. 

At the fourth aisle, he turned in and I saw him put a giant box of fruit snacks into the basket.  Now, as if on rewind, he inched his way – yes, walking backwards – past aisle 3, aisle 2, aisle 1, and finally backing into the very spot where he had started.  Bless his heart, he had stayed right by the basket as requested and still accomplished his clandestine mission.  This time I laughed out loud.  And bought the fruit snacks.

I’m so proud of him for being who he is.  And for outwitting me from time to time.  There are many more such stories, all of which don’t need to be reported here at my expense . . . but when it does happen, I will hear one of these typical phrases “Silly Mom!” or “Oh Mom, you [em]’barrassing me”.  The great smile that comes with them lets me know that he comprehends the way I usually think too.  And that he still loves me even though I am different.  

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That might be the best thing we’ve got going for us as we try to live with and understand each other. Maybe my unique ways are just as enchanting to him as his are to me.  

Jane Thurston

You know that feeling when you can’t find your young child?  Did you flinch and begin to feel that sinking feeling as you read this title?  Everyone knows that first jolt of alarm when realizing that they’re unable to spot their little one.  A friend sent me the following story about her experience with a Down syndrome boy. I felt that horror every bit when I read this tale.

“I took my son and two of his friends to the neighborhood park to play.  As we spent time there, I noticed a cute little boy coming up on his tricycle.  It was a push trike, without pedals.  Then I noticed that he had Downs.  His smile was beautiful!  

 

Soon he was climbing on the equipment with us, and having fun.  But I couldn’t see any adults with him, or anyone who seemed to be responsible.  Then I noticed he didn’t have shoes on, and was missing a sock.

 

He couldn’t or didn’t talk, so I couldn’t figure out his name.  He was wearing a diaper, but looked about 5 years old.  He didn’t have a jacket and it was getting dark and cold. So, I called 911, and we spent time with him to be sure he was ok until help arrived.

 

I knew there was a frantic mom looking for this cute guy.  A kind officer picked up our new friend. And about an hour later I got a call that he was home safe and sound and his mom was very emotional, and upset that he had taken this adventure on his own.  He lives several blocks from the park.”  

You know that frantic mom – you have been that frantic mom (or dad) whether the child is yours or one you were caring for temporarily.  In one way or another it has happened to all of us.  

We have a friend who is a public figure who lost sight of her daughter and executed an agonizing many minutes long search of sidewalks and house and sidewalks again, when they had simply been walking home from school.  I can imagine a whole new level of horror in her beyond what I’ve ever known since this family actually has financial means that might make them a target for a person with ill-intent.  

What happens in those moments?

I used to have a sort of progression I’d go through when one of my children turned up missing.   In the first seconds of discovery was heightened alert, then a grip of fear.  If time went by, the edges of panic swept in, and finally utter hysteria would begin crowding out any rational thoughts needed to address the problem.  

Somewhere between the edges of panic and full-blown hysteria lies the emotional place from which I’d try to formulate the best plan to recover my child.  It’s a crazy place, between panic and hysteria, but we’ve all been there.  

I got so far down that road once that for a long time there was no middle of the road for me.  In the first seconds, I would just skip right from awareness to despair without feeling the other emotions at all.

It wasn’t losing any of my children at a retail store that did it.  Nor when I answered the doorbell at our new home to find a total stranger holding my son and asking “Do you know where this baby lives?”  Not even when realizing I had left the garage door open again and running as fast as I could through the house to close it before my Down syndrome son could run out into the street again.  

Or even at an amusement park where I just began telling every uniformed person I could see that my daughter was missing and pleading for help.  Eventually we actually had to retrieve our daughter from the lost and found.  I don’t recall even thanking the kind woman who had taken her there.  It’s a pretty primal instinct, that of rescuing one’s child.  I had shut out everything but taking her back into my arms.

How much panic can there be?

No, the “missing experience” that changed me was after a huge Christmas party when my Down syndrome son was about 10 years old. We had looked everywhere in that church.  My son has always liked to squeeze himself into small spaces so we had searched every single windowsill, under every table and behind every curtain.  

Finally, I was asked “Jane, are you ready to call the police?”  and I said “He is not in this building.” Outside was a dark vacant lot.  And beyond that a freeway entrance.  All sorts of thoughts had gone through my head.  Just then a woman grabbed me by the wrist and pulled me to my knees saying “Let’s pray.”  We did.  

The next thing I knew someone (I can’t even remember who now . . . I was pretty focused again . . .) was walking toward me holding my son by the hand.  The story went that the place was pretty much cleaned up with tables and chairs all back under the stage on racks that slide into 30-foot long by 4-feet tall & wide concrete caverns that house them.  A man was folding tablecloths in the now quiet room when through the doors to one of those enclosures he heard a muffled sound.  

The gentlemen nearby opened the doors, pulled out the tray of tables and called into the darkness for my son.  No response.  Again.  No response.  A former football star and now caring grandpa, Eldon Fortie, got down on all fours and crawled through dust and grime into the deepest, darkest recess of the bunker to find my son sitting quietly, unafraid.  He said “Joey, do you want to come out?”  And they crawled out together.

It was a miracle you know.  My son rarely makes a sound outside our family circle.  It’s no surprise he wouldn’t have called out for help – especially as he seemed perfectly content back in his little corner. Just the kind of place he likes to be.  But in that instant a sound was made, and a man who was barely aware that anything unusual was going on heard it.  

Eventually we’d have found him, I know, if police had come in with dogs I suppose.  It was a gift to me that it didn’t take that long.  

I left that experience unable to ratchet up slowly from alarm to blind panic.  Ever after that if my son went missing my mind and heart would go from 0 to 60 in a split second.  I can feel it again as I write about it. Though now when I get to that edge of reason I can circle back to the best help one can have in those circumstances:  pray.

The sweet breeze of a happy ending

Years before we had lost track of my son as a 6-year-old at the beach.  Friends had spread out looking for him and of course it was approaching nightfall, when we heard over the loud speaker: “Would the parents of Joey please come to the lifeguard station?”  They told us that he had appeared in their office (up an open-air 25-step flight of stairs, mind you).  They asked him his name —- and he told them.  

Reminding the reader that he virtually never speaks to people outside our family.  (There are people who have known my son for years, who really care about him, and who he knows well, who have never heard him speak.)  To speak his name . . . clearly . . . to a stranger . . . when asked?!  That had been a miracle too.

All kids give their parents these scares.  So, there must be a lot of miracles happening to happen when needed.  I’m glad that my friend “just happened” to be playing at the park on that cool evening when someone’s Down syndrome boy had disappeared on her.  

It’s an enormous amount of stress for parents who, over a longer than “normal” period of time, keep track of their children who might never learn to understand boundaries.  The freedom the child feels feel must be grand.  While those who watch over them carry a burden for two.  

What can be done to help it?  How to cope with it?  All I can say is: pray, and keep checking.

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In times past I checked the whereabouts of my son about every 15 minutes.  Even inside our own home, approximately every 15 minutes I would stop what I was doing and glance into whatever room to be sure he was still where I thought he’d be.   Also, if I were away from him I’d find myself looking up or being mentally prompted to verify his location.  Then look at a clock to discover that it had been only about 15 minutes since I’d last done so.  I’m sure that the unknown mother my friend helped that night does the same thing.  Still, little legs can go a long way in 15 minutes!

Finding a child might take a miracle.  Coping with the weariness of vigilance might take a miracle.  But I know that miracles happen.

Jane Thurston

One of the reasons we’ve been content to simply watch and wait to see what would become of him came to me on the same morning that he did.  His birth was scheduled, with a team of specialists standing by and transplant directives signed.  

Then early in the morning as we prepared to leave for the hospital I had a specific quiet moment where I knew that this child was looking forward to his own arrival on the earth. And he was supremely happy about it!!  I said to myself: “Surely he knows what he’s coming to . . . if he lives 10 minutes or 10 days it must be okay . . . so we’ll just see how it goes.”  

The first time I set eyes on him, except the brief glimpse as doctors rushed him out of the delivery room, we were both laid out flat on wheeled tables with tubes and sensors coming and going.  He weighed 9lbs. 15 oz. so when people in the NICU (neonatal intensive care unit) asked “Which one is yours?” we felt almost boastful pointing to him and answering: “That big pink one.”  Anyone connected with the NICU will know what I mean.  Not many babies in there are half that weight or possessed of as much natural color.

Thus went his first 10 days.  Then of course 10 years, and now more than 20.  His health is great and he is bright and clever.  Which brings me to another reason we’ve enjoyed having him in our home all this time – his personality.  He doesn’t show it much outside our family.  Maybe we treasure it all the more because it seems like a shared family secret.  Even through the “terrible twos” (which lasted from age 5 to 15) he has always been ready with ways to show us that he is still quite happy at being here.  

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Little things that occur on a daily or weekly basis are permanently exciting to him.  Truthfully, I can answer the same question the same way literally half a dozen times a day and he’ll be just as pleased with the sixth answer as the first.  Additionally, when he pulls a trick on someone there’s a glinting self-satisfaction in his eyes that runs very deep.  When the trick’s on me and I hear that bemused, somewhat disgusted “Mom-mmmy!” –  I haven’t always been fooled but it makes him so happy that I go along.  

Many of his peers are the same way.  Joy in the moment, and unafraid to let anyone know about it, is a trademark of the eternally uninhibited.  The slide show at an awards banquet for his Special Olympics Golf Team is an example.  A cheerful Olympian, probably 30+ years of age, saw himself in a photo and called out with whole-hearted glee: “There’s me!”  Every time thereafter when his face would appear he’d shout with equal verve: “There’s me again!”  And the next time, and the next.  I had to smile thinking – these kids sure get a kick out of seeing themselves on the screen.  Contemplation brought me to the conclusion that this feeling is likely not unique to those “kids”, but the ability to let it gush out might be.

My Down syndrome son is having a pretty good time in his life.  For people like him the world spins much the way they choose for it to.  And at their own preferred pace.  That’s not a bad gig if you think about it.

How are things in your life?  Are you letting yourself enjoy whatever is going on?  Did you get to do this recently at your local store? . . . Seriously, didn’t you want to?

Jane Thurston

At Christmastime, we remember the reason for all the world’s joy.  And celebrate the day He became a small boy.

In our church a person’s membership record includes the date he or she was baptized.  I’ll never forget the moment I laid eyes on my Down syndrome son’s record and next to the heading “Baptized” it said “NOT ACCOUNTABLE”.  That was a terrific moment – connected to my son, in bold type, in actual fact: saved.  Christmas is a celebration of the beginning of the life of Christ, before He had actually done anything that would be able to save anyone from the consequences of the things they do that separate them from God.

Joey’s drawing of Christ

When I saw those words on my son’s record I was reminded that there was nothing my boy could do that would make him ineligible to return to God.  At 20 years old, he still doesn’t have the capacity to really know good from evil, therefore he is not accountable for those things he might do or say that are contrary to God’s way.  To see that in print lifted my spirit and increased my respect for this little child who had come to our house without the ability to communicate or use his talents the way most of us do.  One of our books of religious instruction explains it this way:

“Wherefore, they cannot sin, for power is not given unto Satan to tempt little children, until they begin to become accountable before me” (Doctrine & Covenants 29:4)

I am reminded at this time of year of my own need to be reconciled to God through what I can learn from Jesus Christ, and most importantly what Christ has already done for me including the day He was born into this world.  He came to learn what it is like to inhabit a physical body and He succeeded in a way that none of us can, by never making any choice or committing any act that was contrary to what God would want him to do.  

He came because we need to learn the same things, but we cannot meet the same standard of behavior.  In His atonement he felt what we feel and took upon Himself the burden of our stumbling.  Though I am accountable for the things I know and choose to do, my Down syndrome son, and all little children, have not that responsibility placed on them because of what they don’t know.  Until and unless they know right from wrong their Father in Heaven holds them blameless.  What a gift!  They are saved and safe.  

And me?  The greatest gift in the world has been given to me too . . . if I acknowledge the sacrifice of Christ for me, and try to do as He taught, I can be saved from the effects of my inevitable wrongdoing as He suffered for those burdens in the garden and on the cross, so that I can be held blameless too.

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“For God so loved the world, that he gave his only begotten Son . . .”

“. . . and with His stripes we are healed.”

John 3:16 & Isaiah 53:5

Jane Thurston

Love

Emily writes: “I love my brother Joey and I know he loves me too.  I can feel it even though he doesn’t say it directly.  When I am at home I will often hear him from another room call out ‘Sissy, you cute’ or ‘Sissy smart’.  He loves me even though I live far away and we don’t get to see each other very often.  Pres. Thomas S. Monson taught the principle that ‘Heavenly Father’s … love never changes.  

It is not influenced by your appearance, by your possessions, or by the amount of money you have in your bank account.  It is not changed by your talents and abilities.  It is simply there.  It is there for you when you are sad or happy, discouraged or hopeful.  God’s love is there for you whether or not you feel you deserve love.  It is simply always there.’ (New Era, Nov 2013) I know that concept can be real because that’s how I feel about Joey.  His love for me (and my love for him) is simply always there no matter the circumstances or the time that passes.”

Forgiveness

“My love is also there for him no matter what Joey does.  Big or small I will always love him, and am able to always forgive him. One time when I was in high school I got a big surprise. It was a Saturday night.  My mom and I left to fill up the car with gas before the Sabbath.  We left Joey in the family room watching TV with my dad and our other brother.  We were gone about 30 minutes. When we got home I went to my room and found that Joey had trashed the place!  

It was like a tornado hit.  Everything that had been neatly organized was now all over the floor.  The sheets were off the bed, the drawers (and even trash) were dumped out, earrings and shoes were found from end to end in the room, and not with their mates.  I cried.  I did not know what to do!  Eventually we cleaned up and got the room put back together.  And I forgave Joey.  Even though that experience was stunning and dramatic, I forgave Joey.  I didn’t hold on to feelings of hurt or anger.  And in time we could even laugh about it!

Remembering this experience with Joey makes it is easier for me to understand the Savior’s ability to ‘freely forgive’. When we turn to the Savior to repent we receive a truly blank slate in return.  Elder Allen D. Haynie articulated this principle: ‘I testify that the Savior will never turn away from us when we humbly seek Him in order to repent; will never consider us to be a lost cause; will never say, ‘Oh no, not you again’.’ (Ensign, Nov 2015)

Joe does lots of little things, and sometimes big things, that can be surprising and exasperating, but I will always forgive him because of how I love him.  I forgive Joey just as completely as the Savior forgives me.”

Service

Another story from her relationship with Joe parallels how the Savior feels our love through our service to others. Pres. Henry B. Eyring has said, “When we offer succor to anyone, the Savior feels it as if we reached out to succor Him.” (Ensign May 2015)  He described it in a parable about a king honoring his citizens for all they’d done for him. “For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in.”  The people were a little surprised, asking him when they had done all that for him and his response was: “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (see Matthew 25:34–40)

Feel the love Emily has for those who attend to her Down syndrome brother in her words: “I feel so happy when people serve Joey!  A few years back I saw a picture on Facebook of Joey and a boy from our church at a dance.  They were dancing and it was clear they were having a great time.  The caption of the photo said, ‘Me and my best friend Joey Thurston’.  

Seeing the love and compassion that boy had for my brother made me feel so much joy. The service rendered to my brother felt like service rendered directly to me.  When someone reached out to him, I felt the benefit as if it was someone reaching out to me.  Similarly, the Savior feels great love when we serve those around us.  He feels joy in the action as if we were serving him directly.”

Eternal principles in everyday life

My daughter has an eternal perspective about her relationship with her brother.  She has figured out how her everyday life melds with the eternal.  She says:  “I love Joey and that will never change.  I love him so much that not even his biggest offense could ever come between us. I feel deep love when people love and serve him.

The Savior loves us and that love will never change. He loves us so much that not even our biggest offense could ever come between us.  He feels personal divine gratitude when we love and serve others.

Sometimes I feel sad that I can’t talk to Joey and that I can’t have a normal, grown up conversation with him. But then I think about a future time when we will both be on the other side of our life on earth.  I will be able to know his full story.  What will we talk about?  What will he say?  How will we feel?  What a great reunion it will be!  

In the same way, I wonder: when we all meet the Savior, what will we talk about? What will we say?  How will we feel?  What a great reunion that will be too!”

Final thoughts

I recently came across something I had jotted down 6 months before our 21-year-old Down syndrome son was born.  “I had told 4 year old Emily that our new baby would have some problems and be different than she and Stephen.  She’d asked good questions about it and seemed more disappointed that it is a boy than any other of its limitations.  

Later that night we were outside and she came running to me with her arms outstretched.  I picked her up and swung her around and she said ‘Mommy, I just know I’ll love our new baby.’  I asked her what makes her know that.  She said: ‘Because he’s my little brother’.”  And she has proved herself as good as her word.

To read more of Jane’s articles, click the picture.

This might be another real-life story that teaches how we can trust that the Savior is immensely forgiving and has an unfailing love for each of us.  Conceivably we might find it just as natural for Him to say that He does so “because he’s my little brother”, or “she’s my little sister.”

This time of year, we commemorate the beginning of the greatest example of love and forgiveness and service to ever walk the earth.  That being the day we first saw Him as a little boy.  But we knew He would always be our older brother.  And that He would grow up to become the Savior of the World.  How could we help but sing for joy, and say “Merry Christmas!”?!

Jane Thurston

The inside of Joey’s foot.

One of life’s “if I’d known then what I know now” moments can be explained here.  When I went for the amniocentesis that would tell us for certain whether or not our expected baby would have Down syndrome I did not know that one of the physical traits differentiating Down syndrome people from the rest of us is a greater than normal separation between the big toe and the next one.  If I had, I would have been able to see that marker on the accompanying sonogram.  Once I learned of it I realized that probably the professionals in that room had all recognized it immediately.  Wish I’d known then what I know now . . . I could have been saved two weeks of anxiety waiting for the genetic test results to come in.

Recently I had to get my son’s foot x-rayed for an injury.  So I asked the doctor if I could take a look.  I wondered if it would show why the big toe is so far from the other toes.  Boy does it ever!  And this also explains why he wears out the insoles of his shoes right in the middle.  Something I’d also been curious about.  

Shoe Insert

I don’t know how the gene pool works.  But there are things that are set in stone (or in bone) that package us each into the remarkable being’s that we are.  I don’t know how certain microscopic entities dictate the shape of eyes, the length of a femur, toes and fingers.  What about the size of nasal passages and tongue, muscle tone, or mental capacity?  Which little gene caused my son’s bones to grow so solidly into this particular configuration?  And how is it that this gene set is stronger than race or heredity?  I’m a believer in intelligent design – and this design is simply fascinating.

It takes about a year for the facial features of Down syndrome to become fully expressed.  During that time in my life when people would tell me I had a cute baby I would feel the need for a disclaimer.  “He’s Down syndrome.” I would say.  With a quizzical look they would respond “I know.”  I couldn’t be sure if it was obvious because his face was so adorable to me.  Somehow I didn’t want them to be on the hook for a compliment that they might want to take back if they had the facts.  

To read more of Jane’s articles, click the picture.

Now when I see a baby or youth with Down syndrome features I see that it is recognizable right away.  And they are as beautiful to me as any other innocent face.  I have new eyes.  Though they might look the same as all others with their genetic makeup, I know that they have an individual personality.  I know that behind that possibly dull look there can be a twinkle.  I know that they are not scary because they are different.  In fact, those differences can be pretty darn interesting. It’s in the genes!

Jane Thurston

When my older son was small I used to write a letter to my mother once a month.  Included in the letters were his novel statements which we eventually ended up calling Steveisms.  To this day, if any of us read through them that person will shake their head and say “Oh that is so Steve!”

Joey and the Vaccuum cleaner

So here is a photo essay that speaks to my Down syndrome son’s particular way of doing things.  They represent moments in time that illustrate his way of thinking.  I don’t know that there is anything to be learned from them other than perhaps that even people who don’t appear to have much complex thought going on can have a considered point of view.  Expressed in comportment over and over again, one’s personality will come through . . .  

One day our vacuum wasn’t working very well.  I told my son that we’d need to take it to (the proverbial) “man” to get it fixed. I left it in the hallway and he kept passing by looking sad.  I guess he related it to what it’s like to not feel just right and need to go to the doctor.  When I was ready I found where he had set himself up to give it comfort with a blanket and by patting it and staying near until it was time for us to leave.

Another time he came to me announcing that he wanted to go somewhere.  I looked up as he revealed that he had put his clothes on backwards.  He seemed quite proud of himself.  I didn’t particularly have any errands to run, but he was anxious to go out and be seen in what he apparently thought was a clever display.  So I cooked something up and we proceeded into the public square.   

Joey’s backward’s outfit from the front.

The backwards outfit from the back.

Joey loves Pokémon.  The number of ways he has configured, carried, sketched, and examined his cards defies pen and paper.  This photo communicates a bit of the fascination he has with organizing his world and his cards.  A batch of cards we just bought gets matched up with a book.

Pokemon cards

If at any time we are leaving the house he must be given fair warning.  He has to have time to pack up supplies.  Always including paper and pencil or crayons (and these days, iPad).  He’s gotten very good about planning for what he’ll need – even in the dugout.   

And anything is likely to happen if he wants to create a moment of surprise!

Joey being silly

 Or he can wear himself out completely making puzzles with Dad. That’s serious work!

Puzzles are hard work!

Joey doesn’t like crowds or to be asked to fall-in with a group.  It’s so typical of him to go to a place apart, and to literally turn his back on whatever he’s trying to avoid.  Needless to say, that can complicate some situations.

He also doesn’t like loud sounds.

These headphones are a staple at any sporting or cultural event.  

The standard only changes when there’s a roller coaster to be found!

Other events aren’t nearly so exciting. Zzzzz.

And why on this Sunday did he choose to wear every single tie from his closet?  I don’t know, but it’s just “so Joey”.  (notice the pencil, papers, and iPad)   

People have asked if it is awkward or embarrassing for me when my son does these unusual things in public places. Instead of that, these events are so common to me that I forget anyone else might even be noticing.  But I should remember that he is also doing this as a 20 year-old.  That probably makes us stand out.

Perhaps it makes a difference that I know he is not doing any of this out of ignorance.  I’m actually quite impressed with his creativity.  I mean, nobody’s modeling this kind of stuff for him.   These are ideas and intentional plans he comes up with on his own.  

To read more of Jane’s articles, click the picture.

It’s very different from many years past when we’d literally be chasing him through the aisles of a store or event.  I’d finally reach him, catch him by the arm and he’d start yelling.  We were certainly noticed in those days!  What he does today can be amusing (in those days I was definitely not amused).  Because of that things are much better now – though still unpredictable.  If we do get noticed, I suppose I’d assume that people recognize it for what it is – it’s just his personality coming through!  

PS You may have detected the same beach towel wrapped around Joey’s body in some of these pictures . . . that’s a tale for another day . . .

Jane Thurston