World Down Syndrome Day, 2018

I realize my blogging the past few weeks has been spotty, at best.

In fact, this is my first post this month.


I wish I could give a solid reason why, but ultimately it’s a matter of searching. Searching for what I want to devote the majority of my time and energy to and searching for the best use of my abilities.

I could not, however, allow today to pass without acknowledging it. Because lost in search or not, today remains one of my favorite days in the year.


Today is World Down Syndrome Day. It is a day I hold dear and have written about many times:

World Down Syndrome Day, 2017
World Down Syndrome Day, 2016
How to Spread Awareness

I wish I could convince the whole world of the importance of this day, but since I have you here, I’ll start with you.

Music penetrates the soul, of this I am convinced. As I drove Jonathan home today, braving yet another Nor’easter, we both sang unashamedly at the top of our lungs to the Joseph and the Amazing Technicolor Dreamcoat* soundtrack. It was one of my favorite songs, A Pharaoh Story, which tells of the unlikely ability Joseph had for telling the meaning of dreams; a talent eventually making him second in command over all of Egypt.

*One of Jon’s go-to ride-along CD’s.

As Jon’s voice cracked, I listened for the thing which has been occurring more and more with him when we sing together.

Emotion. Deep, deep emotion.

Once, having caught him in such a sweet moment, I asked if he was crying and he quickly explained to me, “My eyes are sweating.”

A few months ago, after a friend of Jonathan’s from church passed away suddenly, we were driving and the song, So Long, Farewell, from The Sound of Music came on.

Who would know this song could mean anything more than children begging their parents to let them stay up late? Not me.

As it worked its way towards the end, to the continued goodbye being sung back from the children to adults, Jon stopped singing, and looked out the window. We reached our destination and he quickly went in, found a tissue, and took care of his tears. They wouldn’t stop and, after cautious questioning, he opened up and told me he was missing his friend. I didn’t know this person very well, but in the minutes which ensued I found myself hugging Jon, sobbing with him over his loss, and grasping at explanations on how to say goodbye to those we’ve loved and lost.

There is so much about life which can be learned from someone like Jonathan, yet the thing which I believe separates him most from the rest of us is his love.

Jon pie in face, 2017

Jon loves hard. This becomes ever more evident to me each time I sing with him. Each time he allows his eyes to sweat for someone taken from us too soon. He clings to love. While many of us allow ourselves to get carried away with the stresses of life, easily losing focus on why we do the things we do, and what the point of this whole rat race called life isJon’s focus has been unchanged.

*It’s all for love, isn’t it?

I’ve never known anyone else to love others with such shameless and continuous effort as Jon. He embraces the commandment given by Jesus before he went to the cross in John 13:34-35:

“A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.”

I wonder what our world might look like if more of us got over ourselves and became more like Jonathan. If we not only embraced, but took the time to understand what real love looks like.

It’s loving the beautiful and the ugly, the rich and the poor, the perfect and the broken. It’s loving in unusual places. It’s loving when you don’t want to, when you don’t have the time or when it feels artificial. It’s loving in spite of yourself.

For World Down Syndrome Day, 2018, no matter how grumpy this awful weather has got you, be more like Jonathan and give love.

Phone Pictures 009


4 thoughts on “World Down Syndrome Day, 2018

  1. Jessica, That. Is. So. Beautiful. i read it to myself and thought it was beautiful. then i read it aloud to my husband, and i could hardly get through it cause it is so emotional. knowing “our Jon” as i do, i can vouch for everything you’ve so wonderfully expressed. i thank your Mom for allowing me to “emotionally adopt” your little brother, and thus, proudly speak of “our Jon” and miss him terribly since our move last year. Jon’s smiles and his hugs contain more love than is possible to even put into words…yet you have done so. Thank you for this writing–straight from your heart, the wonderful photos, and for sharing “our Jon” with so many. and now i need a tissue for my sweaty eyes too….

    Liked by 1 person

    1. Bettiann, Thank you so much for your sweet comments and for reading my blog 🙂 I love how much you love “our Jon” and know he cherishes his relationship with you and your husband.


  2. Hi Jess – I enjoyd reading this – your bro. has touched so many, hasn’t he? He’s got a better quality life than many people, though I know he ha his struggles, too – don’t we all?!

    On another subject, we’re always touched to recieve your Christmas greeting, and to see your pix. Forgive me for being a very poor responder!!! this gave me an excuse to do so, so we trust that you and dear Lance are still doing well. Rog and are – we have much to be thankful for, in the midst of everything. So dear one, many, rich blessings to you and Lance!
    We love you, Soni – for Rog, too

    Liked by 1 person

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