Faster than you can say trisomy 21, everything changes

I won’t pretend to have the corner of the market on perspective.  In fact most of the time my perspective is pretty off-base, usually focused squarely on moi.  But yesterday morning I was jolted back to reality when I heard the tragic news that one of “our” kids with Down syndrome had passed away in his sleep overnight.  At the ripe old age of 12.  I felt punched in the gut as I heard the news from a friend via Facebook and I don’t even know the family.  But because we shared common connections in the Los Angeles area and because the disability community truly is a pretty small world in general, I felt a tremendous loss.  I still feel it.  A hollowness inside.  Like I can’t quite catch my breath. 12 years old.  A precious little guy with an infectious smile and his whole life ahead of him.  No doubt he had brought his family countless moments of joy, laughter, and deep, deep love that mere words, at least my words, fail to adequately describe.  If you’re fortunate enough to either have a child with Down syndrome, or you have a sibling or a close relative with Down syndrome, you know what I’m talking about.  (At the risk of sounding elitist, our kids with Trisomy 21 are different in the most amazing and blessed ways.)  Even though I didn’t have the privilege of knowing his mom and dad personally, I’m going to guess that this boy, like every other baby with Down syndrome, was single handedly responsible for rearranging their priorities in life at the cellular level from the moment he was born.  And I have no doubt that since that day their definition of love has deepened in ways they couldn’t have imagined.  Now their incomprehensibly tough mission will be to carry on his legacy without him.  These people I’ve never met, but with whom I have shared a pretty special path in life, will now never be far from my thoughts.  My heart will probably always ache when I think of their precious gift who left them and us far too soon.  Dance with Jesus sweet Tim.  You will never be forgotten.

Fast forward 12 hours later on the same day and we were once again confronted with how life can change in an instant.  My husband and son were getting ready to run a quick errand to the grocery store so I was brushing Hayden’s hair in the tv room (#445 on his list of my son’s all time favorite activities) when my mother-in-law came into the rec room and said that one of the neighbors had come to the front door saying that there was a policeman out in the court with Hayden.  And we were like, “Um, not so much—he’s right here watching the basketball game on tv”.  So Jeff went out to check it out and at almost the same time, my gut said, “It’s Max.  Go outside”.  So out I went, and sure enough, it was a little boy named Max, who also happens to have Down syndrome and whom my daughter and I had met at the park around the corner about a month ago.  It turns out Max and his mom live really close to the park too and our kids are in the same Challenger baseball league.  And as God would have it, our kids played against his team the other night and his mother and I were able to kvetch and get caught up with each other after the game, so Max was fresh in my mind and I could still feel the sweet hug that he had given me. (Let’s call “fate” what it is:  God given moments in time where seemingly pointless events happen that, when later considered, were really opportunities where God was trying to show us who He is:  The Creator who desires more than anything to have a relationship with us and He’ll use all sorts of crazy circumstances to bring that about.)  So is it just fate that you’re here wasting your precious time reading this?  Hmmmm

It turns out Max’s mom had stepped out for a short while last night and left his older brother in charge.  Nothing new there, the older brother had probably watched Max a hundred times before.  Only this time Older Brother fell asleep on the couch and out the door went Max.  It just so happens the local middle school down the street was letting out from a dance and Max joined the kids who were walking home in the breezy and cool not-quite-twilight evening. Max chose his walking companion well because he followed a boy who lives in our court and who happens to be very sweet and kind.  When the neighbor boy got home he told his mom that a boy who couldn’t talk had followed him home and they immediately called the police, and he had just arrived when my husband and I walked out the door.  We immediately recognized Max and Max immediately gave us both hugs and then I called Maria and left her a message.  She called back within three minutes and was out of her mind with shock and worry, but we reassured her that everything was just fine and that Max was great-he wasn’t flustered or agitated at all.  With the help of the wonderful policeman, who went to Max’s house and picked up his big brother and then loaded Max in the back of the police car with him and took the boys home where he waited for Max’s mom to get home, the family was reunited within 30 minutes.   I think we all had enough adrenaline in our systems to light up L.A. and the Grand Valley or a week or so.

We who are fortunate enough to have kids who live outside the highly overrated bell-curve-of life share a life force that is hard to describe.  We unite in joy with each milestone met and mastered, no matter how insignificant the world sees it, and across the country every single parent who has a child on the autism spectrum holds his/her breath until a missing child with autism is found.  It doesn’t matter that we’ve never met that child or his/her family or that they live thousands of miles away.  We KNOW what it’s like to have a child who doesn’t compute safety, consequences or directions, so we lie awake praying over them until they’re safely back home.  Likewise, we can’t control the tears when we hear of the incredible loss our friends-whom-we’ve- never-met are suffering when a child dies.  We instinctively internalize the devastation and weep without shame for those who will have to spend the rest of their lives without the light of their lives.  We hug our babies (who are now almost as tall as us), a little tighter, gaze into their sweet eyes and memorize each freckle, each upturn of their mouth that quickly becomes an impish grin, and we hold their hands a few seconds longer than necessary so we will never forget what it feels like to have their fingers intertwined with ours.

And every once in awhile we are blessed to be part of a miracle of helping someone find home.


  1. What a beautiful tribute to Tim. We miss you!

  2. Beautiful, just beautiful. Thank you Gigi!Carrie

  3. Beautiful, just beautiful. Thank you Gigi!Carrie

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

The Diary of a Not So Ordinary Boy

My world, its ups and downs


A Holistic Site for ALL Paws is the best place for your personal blog or business site.

Talking Math with Your Kids

Because children enjoy using their minds

The Never Say Never Home Schooler

A home school blog written by someone who NEVER, EVER thought she'd home school. This ain't your mama's idea of home schooling, but the kids are learning despite me!


Fun Learning Resouces for Kids


When will we ever learn?: Common sense and nonsense about today's public schools in America.

Left Coast Dad 2 Two

I Control The Remote When No One Else Is Home

%d bloggers like this: