Since last month when I reflected on how little people actually know my Down syndrome son I’ve had other thoughts come to mind about how different perspectives can be had on almost every subject or event.  A person might be sitting on a bench enjoying what feels like a perfectly beautiful day when the sun shifts just a little and all of a sudden the same repose on the same bench becomes uncomfortably warm and the day doesn’t feel quite so lovely.  So what is real?  I think whatever you are experiencing at the time is the real thing – because it’s your experience.

My husband was ill most of last week and had gone to bed early one night while I stayed up to get some things done.  As I wrapped up and left the room I’d been working in to go to bed we crossed paths in the dark of the kitchen at 1:44am.  He couldn’t sleep anymore and had just gotten up.  We’ve done the same thing more than once at 3 or 4am.  Same time, same green lights of the clock on the stove but for me it was late at night, for him it was early in the morning.  Which was it really – the end of the day or the beginning?

What is real depends on what you are personally experiencing.

Years ago there was a group of women who got together often for their young children to play.  I wondered why they didn’t ever include me.  I had a toddler, I thought, I fit right in.  But I stood back from it once and I realized why.  I had a toddler, I thought, but he was 15 years old and weighed 150 lbs.  We were experiencing the same things:  needing to follow the child if he wandered off, packing snacks that would please him, attending to him if he tripped, keeping track of his shoes and socks . . . but it wasn’t actually the same experience, was it?  From their point of view I am sure it never occurred to them that I felt like a part of their group.

Joe on horseWith my son approaching 20, I feel like I am part of another group, but it turns out that I don’t really fit in this one either.  The parents of my son’s contemporaries are now crossing the bridge to becoming empty nesters.  And even though I have experienced our older children moving on from my home, I see that I can only have a hint of what those parents are going through because I am not and will not personally experience it.  I don’t have a way to truly see all ways the pieces fit in that experience even though I think I understand it.  I can only imagine what it is really like.

Last month I wrote about coming to appreciate that everyone’s experiences are worthwhile for them.  That everyone’s distinctive experience through life is important for the very reason that it is unique.

There is no other way to experience life for any of us except uniquely.  

So this month I am realizing that there is also not a “best” way to do or see a lot of things, no “best” way that the sun “should” rest on your shoulders or mine.  The goal should be just to be present in our own experience and try to find the pleasantness in whatever way things are at the time.

“Keep it real” was once a common phrase.  I like that.  But what’s real for you and what’s real for me, even though they are all intertwined and happening at the same time, can be very different.  Somewhere in the back of my mind there has always been this determination to maintain that we weren’t so different from other families:  we have 3 children who pretty much always want 3 different things and they are growing up.  That’s it.  But if I look back I have to admit that much of our life has been different from others and that it will be different in the future.  What feels so exciting for me right now though is the realization that there is no better or worse way to go.  It doesn’t matter that the sun feels different to you than it does to me today – it’s not better for you or worse for me – it’s just life.  It’s just sensory input that knits with who we are and comes out as each person’s own experience.

I am reminded of a quote once used by Gordon B. Hinckley:

“Life is like an old-time rail journey—delays, sidetracks, smoke, dust,

cinders and jolts, interspersed only occasionally by beautiful vistas

and thrilling bursts of speed.  The trick is to thank the Lord for letting

you have the ride”  (Jenkins Lloyd Jones, “Big Rock Candy Mountains,”

Deseret News, 12 June 1973, A4).

Down Syndrome Days might be different but still sweet

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

Considering this analogy in light of what I’ve been thinking brought a picture to my mind of myself and those around me set into that quote . . . we could be sitting right next to each other yet having completely different experiences on such a trip and there’s no room to either envy or condemn anyone for the way their ride is going.  In the end it’s not the variations on the journey that matter, just that we all get along and arrive safely together.

About Jane Thurston

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