I
cried in church yesterday. I cried hard
in church yesterday. My 10 year old son,
John, stood next to me during worship time.
He loves music. He loves the
drums. And we have a great worship
team. The music is rich and it always
reaches right into my soul. For years
while John was on chemo, I cried every Sunday during worship time because it
was such a release, a re-set so to speak. Here I am, God. I’m broken and I hate what we’re going
through, but it’s in your hands. You
give and take away. Please let me keep
my Johnny Bubs.
I
haven’t cried in church for a long time.
Yesterday, however, the floodgates opened, and here’s why. Yesterday it was all suddenly clear. What once felt like the rug being yanked out
from under me was all blessing, only blessing.
What was promised came to pass.
Yesterday it all came full circle, but to understand what happened yesterday
you have to understand where the circle began.
My
son John has Down syndrome. I’m not
proud to say that the day of his birth was the most difficult day of my
life. A day that should have been one of
celebration turned to one of deep sorrow when I heard the news of his
diagnosis. Fifty percent of babies with
Down syndrome have heart defects. Maybe
he’d have a serious heart defect and die quietly before we ever brought him
home from the hospital. What mother
thinks these things? Down syndrome wasn’t
a problem I wanted to deal with. His
heart was fine and we took him home when he was four days old.
I
cried often in the beginning. I cried
for John. I cried for my other kids
thinking I had ruined their lives. I
cried for myself thinking I had ruined my own.
I felt inadequate to be the kind of parent a child like John would
need. What would be expected of me? Would I be required to fight for his rights?
And
I prayed. I remember sitting in my
living room with the morning sun shining through the front window holding little
baby John tight and praying, God, you
made John. You put that extra 21st
chromosome into each of his cells, cell by cell. I know you can take it out cell by cell. Please take it out.
God
didn’t take it out. He didn’t change
anything about John and his diagnosis.
It became apparent that the only thing that needed to change was my
heart. On another morning several weeks
later I was again holding John tight, sitting on the edge of my bed, praying to
God to help me accept everything about John.
I don’t know if I actually heard God’s voice or if these words just popped
into my head: “He will bring you great joy.”
Really? OK, God, I’ll hold onto that.
When
John was diagnosed with leukemia at 2 ½ years old, Down syndrome ceased to
matter to me. Watching your child suffer
and having to make peace with death render little things like extra chromosomes
meaningless. And now, 10 years later,
Down syndrome is merely a nuisance. Down
syndrome affects everything about John’s life, but he isn’t Down syndrome. He’s a little kid trying to make his way in
the world like every other kid. My job
is to help him in any way I can so that when I’m gone he can operate without
me. My job description isn’t any
different for John than for any of my other kids.
Which
brings me back to yesterday. John reads
well and likes to sing along with the music, but yesterday during one song the
projected words were in cursive. John’s
still learning to write in block letters.
Cursive isn’t even on our radar, but I knew yesterday that it should
be. John
needs to learn to read cursive even if he never writes it, I thought to
myself as I sang the words and John sang to that song by repeating what I was
singing.
Then
he threw his hands into the air. He does
this every week observing the members of our congregation who raise their hands
in worship. John takes it to a whole new
level, though! Sometimes he looks like
he’s directing air traffic. Sometimes he
mimics the movements of the drummer.
Yesterday he was completely absorbed singing, waving his hands,
worshiping God in his own way. And I
started to cry. John’s love of music,
his love of life, my love for him and my desire to make his life better by
helping him learn to read cursive all brought me someplace I had never been
before in all my years of going to church.
What I felt in that moment was complete, soul filling JOY!
“He
will bring you great joy.” And in that
joy you’ll know that you are dearly loved by your creator, and you’ll know that
what you once saw as a burden was only ever meant for good.
That’s
why I cried in church yesterday.
Absolutely beautiful! Our Eon has brought us great joy, as well. I've never meet anyone who so fully embraces the moment! :)
ReplyDeleteBlogging is great! You seem to have a great voice -- I can't wait to read more!
ReplyDeleteExcellent post! I've cried many times in church too! My daughter Beth is 28 and she also raises her hands in church. She always sits in the same seat (far away from us, since she was in Jr High) and I always hear comments from people after service about how much they love watching her worship the Lord!
ReplyDelete"He will bring you joy", that's just amazing! We can always trust His promises!
"A little child shall lead them".... Thanking God for the joy that John brings to your life.
ReplyDeleteHi Ann
ReplyDeleteWhat a lovely first blog!
Good luck with the new blog.....I'll be reading your posts with great interest!
Love LinMac from the Downsyn family!
Ann! This is a wonderful blog! I loved reading more of your story. I want to go have coffee with you and hear more! I guess until you come back to MI or I get to MN, we will have to be electronic friends! I'm so glad to know you!
ReplyDelete