Sunday, March 20, 2016

What Do You See?

Imagine living in the exact same world as everyone else, but having a body that was different enough that it might as well be another planet. Most sounds and feelings don't bother the typical person, but for you they hurt or irritate you. There might be other senses that you seek out, somehow filling you with a comfort you can't explain. You would try to explain it to others but lack the means to communicate it properly. What comes easily to most is hard and feels impossible to you and life becomes isolating and difficult and so you seek those who know you beyond words and cling to them because they are the only rock you know in a foreign world.

Then imagine that in this lonely world someone reaches out to you. Connecting with them isn't natural, it's awkward like a blind man finding his way around a new room. In time it's easier and without words you begin to build a relationship much as the blind man walks around a table he knows is there instinctively from experience, no real thought needed just a reflex of sorts. That lonely little island isn't so lonely anymore and that connection and others like it come to bring real joy. Your world becomes bigger, safer because you begin to become part of a bigger whole.

This is Eli, this is his world. We saw such a clear example of this with Eli in church. He loves music, yet has very little he can do to participate in singing time for the Primary children - he has no voice. With nothing to connect him to what was going on, he'd act out or throw a tantrum but the moment I began to put ASL signs to the songs his eyes lite up his attention stayed on task. Now whenever I sing the words, "Gethsemane, Jesus loves me.." he gets a smile as he emphatically signs 'me'. The other children sign this short phrase and suddenly he isn't so alone, this small act is connecting him.
He understands so much more than we often give him credit and yet we have struggled against other people's stereotypes and perceptions. It was suggested that he simply remain in nursery with the younger children or that he be placed in a class separate from the typical children so as not to be a disruption. We have requested an aide to be with him, but even then it was described as a 'babysitter' implying that they don't see him learning much but want to make sure he doesn't hinder the learning of others. It's been a quiet source of pain to me that they cannot see him as I do and most of all, as God does.
Still struggling with more liquid foods and the use of a spoon.

A fellow DS mother put it well, these children are here to teach us about ourselves.

This year the following video was made for World Down Syndrome Day. It hit home to me in so many ways.

So I ask you- when you see my son, do you feel pity, annoyance, disgust or undue concern? Or do you love him as a friend, as a child or God? Perhaps what we should be asking ourselves when we feel these feelings is 'What Do I see?' and 'What does that say about me?"


  1. That is beautiful about the sign language!!!! how wonderful. I am sorry you have had struggles at church :( those times are hard. Thanks for your thoughts. You certainly have a way with words :)
    Rachel Jensen

    1. Thanks Rachel. I love seeing pictures of your little man, it make me wonder at Eli's future and I can't wait to hear him say the words I luv you!