Editor’s Note: In honor of Down Syndrome Awareness Month, all of the “Perfectly Human” posts in October will be stories of families and individuals with Down syndrome.

When our
son Adam was ten days old my husband picked out a Bible verse for his life: “I shall not die but live, and tell of the works
of the Lord” (Psalm 118:17). He chose this verse because four days after
Adam’s peaceful home birth he was rushed into intensive care with a
life-threatening blood infection. He spent two weeks in the hospital recovering
from this event, during which time we were told that doctors suspected he had
Down Syndrome.

Going from
having a healthy newborn with a life full of expectations ahead of him to
having a disabled child with a life full of unknowns was not an easy transition,
but Adam’s sweet personality and larger-than-life eyes helped us along. Over
the course of the next six months we waited to have Adam properly diagnosed as
we tried instead to get to know the reality of the son before us. When he was
seven-months old Adam had to have open-heart surgery to repair the two defects
with which he had been born. It was during this period, and ironically on the
day in which his tiny life hung most in the balance, that we received the final
diagnosis: Trisomy 21. Looking at him
lying in the bed with tubes everywhere, I couldn’t have cared less. “So be it,
just please give me my son back,” I pleaded with the Lord. He did, and Adam
began to thrive. He did not die, but indeed began to live.

Adam’s
development has always been quite delayed, and at the age of four he was given
a second diagnosis of Autism because of his lack of speech. He is one of the
most difficult pupils in his class at school–still nowhere near using the potty
at seven, and won’t hold a pencil except to throw it–but there is something
about Adam that makes people stop and talk to him in the street. There is
something about the way he dances spontaneously to music anywhere, anytime,
that makes people smile. There is something in his infectious joy at church,
the way he strips off his clothing in ten seconds when we get to swimming club,
and the light in his eyes when he jumps over the hurdles at his sports class.
He doesn’t care if he’s last, and neither does anyone else. Those who “get”
Adam know that it doesn’t matter to him the size of the step he takes, he’s so
pleased that he took a step at all.

As his
brother Caleb will tell you, Adam does not speak, but he still manages to
“tell” of the works of the Lord with his life. He tells of the Lord who healed
his heart through skilful hands, of patient and persevering teachers who pick
up the pencil again, and of friends
who want to spend time with him just to make him laugh. He tells of the beauty
of enjoying food and music and dancing with delight. He tells of the freedom of
living without jealousy or greed or hate, and the fun of living with a lot of
mischief, and largely without any shoes or socks. I think one of Adam’s most
stunning gifts and talents, in fact, is that he is not burdened with words.
There is a downside to not speaking, but since Adam doesn’t see it I choose to
be ok with it too.

When I
first learned of Adam’s diagnosis, the thought that came to mind was “How will
I know what to do for him?” This has often proved the most frustrating thing
that Adam and I encounter, as I do frequently find myself wishing I knew how to
help him or understand him or communicate with him better. I’ve lost count of
how many nights I’ve joined Adam in crying because I didn’t know what was wrong.
Or how many days I’ve shaken my fist at God for giving me more than I thought I
could bear. But living day to day with someone is the best way to know what to
do for and with them, and Adam and I have come a long way in the days we’ve
been given to be together.

I would
have to say that another of the Lord’s works through Adam is the journey that
he helped me take. I know that I am different because of learning how to love
Adam, and that our family lives differently with him in our midst. We are
grateful for our little, mischievous reminder that the Lord’s works are great
indeed, and we will continue to tell of them as long as we are able.

Stephanie Brock lives in
Aberdeen, Scotland with her husband Brian and sons Adam and Caleb. The family
is expecting their third child in March. Stephanie stays home with the boys and
is involved part-time in work to support children with special needs and their
families in churches across Aberdeen.