Day-to-Day

“Any idiot can face a crisis; it’s this day-to-day living that wears you out.” – Anton Chekhov

When I checked in at Mia’s ophthalmologist appointment the other day, the receptionist asked, “Did you fill out the paperwork ahead of time like we asked you to?” I kind of stared at her for a minute. “What paperwork?” I finally met brain overload. I’m sure they told me about it. I’m sure I even smiled and said, “Sure, no problem.” I think I need a vacation.

I scheduled Mia’s six-month (although she’ll be seven months old at the time) evaluation for occupational therapy. I know she’s doing fine and it’s not going to be a shocker of an evaluation. It occurred to me today that the date of the evaluation is exactly one year to the day of our first ultrasound, when they told us she might have Down syndrome. I don’t remember much of June after the 12th. I pretty much spent the end of June sitting in the dark at night searching the internet for information and crying.

I’m thinking that this June will be far less dramatic.

But I know when I’ve hit my limit and need a break.

In July, our family is headed to Colorado for a couple of weeks. We’re going to hike and enjoy the outdoors and get a little mountain therapy. I think all four of us need it. We need to just play outside and not worry too much about schedules and therapy and all of the stuff that goes with it.

I’m excited for the quiet us time (and maybe visiting some friends and family!).

We just have a month and a half of day-to-day living to get through.

Fair

“All we have to decide is what to do with the time that is given us.” ― J.R.R. Tolkien, The Fellowship of the Ring

In church on Sunday, we prayed for a family who had a brand new baby. As we started to pray, our pastor said, “Let us pray for one of God’s highest blessings – a healthy baby.” I bristled. I couldn’t help it. A “healthy” baby.

There’s still some anger just under the surface. Anger that Mia has to struggle with a chromosomal disorder. Anger that she has to deal with health problems, cognitive problems, and mean horrible people. Anger.

After church, I asked Nate, “Why can’t Mia be a blessing too? Are only healthy babies blessings?”

He said, “What do you mean? She is a blessing.”

“Well, if a healthy baby is a blessing, does that mean that a baby with a disorder is not a blessing?”

“You’re making the assumption that just because a healthy baby is a blessing then the converse must also be true. That a baby with health problems is not a blessing. That’s just not true and that isn’t what the pastor meant.” Nate was being much too logical. I was still angry.

Of course, I wasn’t angry at the pastor. What he said was just fine. I was just angry for my little girl. I was going down the “it’s not fair” line of thinking.

A few weeks ago, I stumbled on a study about adults with Down syndrome. It’s rare that I would dig into an article like this because I’m trying to stay in the present right now and not worry about what 20 years from now will look like. It’s no more productive at this moment to try to determine what Mia’s abilities are going to be than it is to start filling out Fynn’s application to Harvard. However, on that day the curiosity overcame me and I read.

There was one story that really stuck out. It was the story of John. When he was a baby, he was put in an institution because he was born with Down syndrome. He spent his childhood and adolescence there. When he entered adulthood, he took a few life skills classes and they let him leave the institution. He got a full-time job, bought a house, amassed a large savings, bought a truck and a trailer that he could take to the lake fishing on weekends, and lived his life. Later when his mother got sick, he moved her into his house and took care of her at the end of her life.

I think about that story a lot. I mean, it’s an encouraging story about an adult living independently with Down syndrome, but that’s not why I think about it. I think about it because that poor baby was put into an institution just because he had Down syndrome. He had to live without his family because he had a trisomy disorder. He was perfectly capable of living successfully at home and being with his family, but he didn’t. And the odds were that a doctor told his mother that an institution was the best place for him.

That’s not fair.

I also think about the end of John’s story. He moved his mother into his house and took care of her even though she had decided she couldn’t take care of him when he was an infant. He could have done the same thing to her as she had done to him. He could have put her in a nursing home and walked away. Who would have blamed him? He had a disability. He wasn’t even able to grow up in his own house. He could have just abandoned her in her time of need.

But he didn’t.

I think about that a lot.

I know my view of the story is not that simple. I’m sure a lot more happened and went into every decision made. But I look at Mia and think about all the things she gets to see and do. All of the love that she feels and gives every single day, and I feel angry and sad for people like John.

So what now?

Is it fair that Mia has a trisomy disorder? Is it fair that she will have to struggle? I guess I’ve been slowly coming to the realization that it doesn’t matter if it’s fair or not. It happened and here we are. And all that’s left is to decide what to do with the time that is given us.

Today we’re going to play in the sunshine.