Yo soy La Lay

adventures in family, faith, and Down syndrome


on March 23, 2014

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.


9 responses to “Three

  1. Shannon says:

    Thank you so much for sharing this. I can’t imagine what it would be like, but its great that there are those out there who do and share their positive outlook with the world. Cheers.

  2. Oneinamillion says:

    People says the strangest things sometimes. I think they usually mean well but have no comprehension of the effect of what they are saying. I am dreading hearing the things people will say when they first meet our little Peanut. I think knowing your own position as strongly as you do is the best response.

    • Maggie says:

      I think you’re right and most people just want to make sure that we are doing ok. And then there are those who are just mean…. but as my lovely high school students always tell me, “haters gonna hate.” I just HAD to get those statements out there and OUT of my brain!!!

      • Oneinamillion says:

        Oh fair enough. I sometimes look at people at think “did you not just hear what came out of your mouth?” Sadly I am not sassy enough or quick enough to come up with an immediate retort.
        And your students are right, but that doesn’t stop it from being annoying and hurtful sometimes!

      • Maggie says:

        Me neither. I always find myself walking away annoyed and thinking up some great response 2 hours later. And I’ve definitely had to learn to bite my tongue. :-/

  3. Deborah says:

    I just found your blog … via babycenter, I think. 🙂 I’m only on babycenter occasionally, but my little guy with Down syndrome is 2 years old. And we used to live in Chicago. People do say really weird things. For the most part, if it’s someone I know, I try to give them the benefit of the doubt and “hear their heart.” Like you did with the first comment. The second comment is just messed up. And the third is funny – I know I wondered when Ben was born about whether *I* would change and whether I would be all about Down syndrome all of a sudden. Turns out, I’m still the same mama I was before … I don’t think I am any more or less fun. 🙂

    • Maggie says:

      Yes! People get awkward… I’m sure that I get awkward sometimes, too!! I just keep hoping that by living normally that people will be less weird about it!

  4. Katie says:

    People are so ignorant. When I was pregnant with Avery, it came up that Nick and I chose to forgo all the prenatal testing for disabilities, and my old boss made a comment that if she found out her baby had down syndrome she would have an abortion. No hesitation. I lost what little respect for her I had at that point.

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