Yo soy La Lay

(Typing on an iPhone is obnoxious.)

As we sat down to dinner last night, we wanted to talk to Ellie about the fact that I was going back to work in the morning. The conversation went as follows:

Me: El, Momma is going to work tomorrow, so I won’t be here in the morning.

Ellie: You’re gonna go be a teacher?

Me: Yup, I sure am!

Ellie: and Daddy’s a teacher and when I’m a person (the word she uses instead of adult), I’m gonna be a teacher too! And Tessa’s gonna be a teacher too!!

John and I exchanged a pained glance and inwardly, I cringed. Outwardly, there was a forced smile and a “yup, she sure could be a teacher!”

Can she?

There is a fine line that we dance around as parents of a child with Down syndrome… the line between being realistic, based on what history has shown us and being optimistic… unwilling to create some self-fulfilling prophecy that keeps Tessa from her full potential. That line is blurry. What is her full potential?? And while all parents think about this with their children, it’s different when the child is toting around an extra chromosome. It just is.

The truth is that I don’t care what job Tessa has, that’s not the point. A person’s job or income is not the measure of their success in my world. What I want is for her to have choices. I tell my students almost every day that their education will give them choices. And I want the same for my own child. Happiness and choices.

The words “fair” and “deserve” are two that often make me cringe. Life certainly isn’t fair and when it comes down to it, I don’t know that any of us deserve anything, good or bad. That doesn’t keep me from wanting or hoping for my girls. We’ll continue to walk that line between realistic and hopelessly optimistic… praying every day that we wind up on the side where the glass is half full.

These are three things that people have said about Down syndrome since Tessa was diagnosed.  All three have been bouncing around in my brain for a little while now.

1. “You treat your child with Down syndrome like all of your other children – you just expect less.”

This statement came from an elderly woman who had raised a child with Ds many years ago.  God bless her for doing her very best with the information they had back then.  One of the greatest blessings so far in Tessa’s life is that she has been born into a world that has learned a lot (and is still trying to learn) about the potential of a child with Ds.  We are seeing more and more that there are FAR fewer limits to their potential than we thought.  My years in education have taught me that you can be firm, fair, and consistent with your expectations, but that you cannot treat all of the children the same.   My expectations for Tessa are consistent with what I expect from Ellie, but the approach to get her there will be different.  And like all of us in the Ds community, it is now our life’s work to break down the antiquated ideas  of what our kids can and cannot do.

2. “Every parent of a disabled child says they wouldn’t change their child.  But that doesn’t mean that you wouldn’t have chosen to terminate had you known before she was born.  It’s selfish to have a child like that.”

No.  Just, no.

Apparently, I made someone mad when I wrote about Tessa’s beautiful life and how I was so glad that she was born.  I didn’t ever think I would get a response like that… My only answer is no.

3. “I’m afraid that you guys won’t be fun anymore.”

A dear family member wanted to express the concern that we might become so wrapped up in the hard part of Down syndrome that we would lose our “zest for life.”  John and I really like to have fun.  We joke around approximately 96% of the time and generally find joy in most of what we do.  Clearly, not everything we go through with Tessa will be joyful.  But laughter is our lifestyle, we don’t go one single day without giggling about something.

When we got married, John and I vowed to have a strong marriage first, a strong relationship with our children second.  We believe that it is vital for our children to see their parents in a loving, committed relationship… we joke about our “united front” in our decision making all the time, but it really is something that we take very seriously.  And while life isn’t always easy and we don’t always agree and sometimes our kids take a lot more and we are left with only a few moments, those moments are important.  We aren’t willing to give up fun.

So to my dear family member, while our family might be a little different, so too will yours be when your family grows again.  However, in our house, priorities are priorities, and fun will be had.