Monday, February 4, 2019

Words with weight.

She was part of the conferring ob/gyn residents gathered outside my hospital room on the labor and delivery floor where I would spend weeks praying to get to a safe delivery date for my trio. I imagine that she had no idea how loud she was speaking or how clearly her voice carried. I wonder if she ever gave her words a second thought.

"Why are we working to stop her labor? I wouldn't want cerebral palsic kids. She should really just deliver and let them die."

I was 23 weeks pregnant. I had been on bed rest for a month already. In the hospital for three of those -- without even wiggling a toe out of the bed. I had had multiple ultrasounds and every single time the personalities of these three little bitties was clear. Benjamin (Baby A) was the ring leader and very busy using the other two as his punching bag (To be fair, they were literally on top of him). Mason (Baby B) was a bit private and quite the prankster. Some days he hid behind his sister so that finding him was a huge challenge. And Claire (Baby C) liked to move and groove, wiggle and see how far away from those pesky brothers she could get (Trust me, there wasn't much personal space -- she would get up and as far under my rib cage as possible!).

Young ob/gyn resident didn't know them. I knew them. I was also just arrogant enough in my faith that I thought Cerebral Palsy was not something we would deal with. I mean, I was praying these babies to a healthy delivery date. (But that is a whole different blog post.)

Baby A, B, and C will turn 22 years old this year. Obviously, I haven't forgotten the words that carried into my room on that L&D floor in Chicago.

I can hear her audibly today.

I could hear her audibly 21 years ago when the doctor diagnosed two of my three with Cerebral Palsy.

And yet, if you have met me, you know that even though her words echo, I don't give them worth. Benjamin, Mason, and Claire bring more to this world than even I ever imagined. I chose life for them. I would choose life again. And again. And again. And even knowing that the boys would in fact have CP, I would still lie in that hospital bed for 10 or more weeks and do everything every doctor told me to do to get all three of them to a healthy delivery date. I choose life.

But the thing is, even though the words don't have worth, they do have weight. And I have carried them. They feel heavier some days than others.

They felt heavy the day the mother of the family sitting in the booth next to us took one look at us, grimaced towards us and then said to her family "Oh bless their hearts." It wasn't a blessing.

They felt super heavy when I wanted my trio to sing in the preschool church choir and was told as long as I stayed and helped they could be a part.

I wasn't sure I could bear under the weight the Sunday that we showed up at a new church and the usher pointed to Benjamin (an 8-year-old Benjamin) and said "You should have gotten here earlier with that."

But they feel the heaviest when people complain about having to add accessible parking spaces, or ramps. They feel heaviest when people block loading zones, and when we arrive at church and can't find a ramp.

Here is what I need to say: Yelling about the importance of choosing life is just that -- yelling -- if we don't also figure out how to minister to families like mine. If we are going to be indignant about laws that allow for the termination of pregnancies when differences are found (and don't misunderstand, I am upset about those laws), then we must also be indignant when our church doesn't have a Special Needs Ministry. 

We must also be indignant when the family rolls into our church and can't find a place for the wheelchair to park and the family to sit together.

We must also be indignant when anyone insinuates in any way that people of faith do not have children with medical needs.

We can't ignore families with challenges. We can't make them our projects either. We have to stand with them -- point them to the ramps, then pull a chair up beside them.

The triplets were 12 when they attended jr. high camp with our church. They spent time watching their friends do rock-climbing, Frisbee-throwing, tossing the football during free-time. We were getting close to the end of the week, when a couple of the men approached me (Of course, I was chaperoning one of the girl cabins so that I could dress Benjamin every morning, etc.). The men had been watching the boys and wanted to do something special for them to make up for the fact that so many of the activities had been inaccessible. They wanted to give them a ride down the zip-line. The zip-line, though, was at the top of a big rock wall. 

It didn't seem possible to me. Those men had a plan. They harnessed the boys in and then used a pulley system to pull them to the top of the rock wall. They heaved, and tugged and pulled them up so that they could fly down the zip-line. It was exhilarating.

And on that day -- on that day, I didn't feel the weight of those horrible words at all. Rather, those men could whisper and I would strain to hear anything they said. Their words have meaning, weight and worth because they didn't just share a meme on social media -- they literally worked to support us and our differences. They ministered to us well.

It is time to roll up our shirt sleeves and start tugging people to the top of the rock wall. It is past time.

Oh, and I should tell you: On April 18, 1997 when it was clear we were going to have to deliver the triplets, those ob/gyn residents were clamoring to be in the operating room -- triplets are not an every day thing, after all. My attending physician let me choose who got to be part of the delivery. Two guesses who had to wait in the hall....

Carol - The Blessings Counter