Riley

Yesterday, Shari, Ashlyn and I went to the Down Syndrome Clinic at Riley Children’s Hospital. It was our first trip.

We want Ashlyn to receive the best care possible. And, Riley is a world class children’s hospital with a very good Down Syndrome Clinic.

But I was not looking forward to our appointment. I was pretty hesitant. As wonderful as they are, hospitals can at times feel like a “system.” Almost like an assembly line. I like hospitals. I don’t like the system.

As we enetered the facility I was guarded. It was surreal. When you find out that your wife is pregnant you never consider the possibility of walking through the doors of a children’s hospital. Never. Especially, not while pushing your child in her stroller.

Just by walking the halls of  a children’s hospital you see things that break your heart. Before we left I started off my morning by reading and praying Matthew 5. As we walked the halls of Riley those words were ringing in my ears: blessed are the poor in spirit…blessed are those who mourn…Really?

We checked in and sat in a waiting area. There was a beautiful Asian girl, maybe 2 or 3, playing in the waiting area. She had Down Syndrome. She really made me smile. So beautiful.

Called back to our exam room, weighed, measured. Ashlyn continues to gain weight. Continues to grow. That is really, really good. Not gaining weight, not growing can be symptomatic of a heart issue.

The doctor who we saw was especially kind. Her first questions were about us, how we’re doing, and we had a lot to say. She empathized. Connected. Listened. Eye contact. Cared.

We worry about the future – what will Ashlyn’s life look like when she is 15, 25, 35? What will she be able to achieve? What won’t she be able to achieve?

The Dr. responded as best as she could. In short, we know but we don’t know. We know her future will look differently. We don’t know specifically how. There is no test to determine that.

She examined Ashlyn. For right now, Ashlyn is a pretty healthy baby for having Down Syndrome. No heart issues. Able to eat without a tube. Height + weight gain. Muscle tone that is good for a baby with Down Syndrome.

We’re incredibly thankful for that. I can’t imagine preparing for open heart surgery on a 3 month old but that routinely happens with Down Syndrome Children.

We continue to try and focus on ‘right now.’ So hard to do that. Especially when there are developmental milestones you want to see your child reach.

One of those milestones is smiling. Ashlyn had yet to smile. Kyla smiled at 4 weeks. The comparison game is a killer.

Toward the end of the appointment the doctor was looking and talking at Ashlyn. Ashlyn looker her right in the eyes and gave her a big smile. So cute. So encouraging.

Right now.