Saturday, December 10, 2011


I've wanted to discuss this for some time.  It's tough bringing up topics that ruffle feathers, that get people going and think badly of you for your thoughts or opinions, but sometimes, it's necessary.  To say what we need to say.  For our children, for ourselves, sometimes our truth needs a voice.  So, you may not see or understand what I am about to write, it may rub you the wrong way or your perception of me may change.  I'm ok with that.  I've got to do it.

It's funny all that changes in a year.  Our lives have forever been changed by the birth of our third child and his extra chromosome.  He changes how we see the world, the people we pass daily that we used to not see, we stop and look a little longer.  We stop and acknowledge all people now.  Finding value you in all lives around us.  I wish I could say I did that before but I didn't.  My life was so much more shallow and had a lot less meaning.  But, now, now my boy has inspired me to think harder and dig deeper to a place inside all of us that sometimes we don't want to visit.  A place where the value of life is in question.

A lot of people have asked us if we knew about Nolan and DS prior to his birth and if we did any testing, had any markers, I think most people ask this question for the same reason I would if I were in their position.  I would want to know how I could "figure" it out if that were my situation.  We didn't do testing with any of our children.  I am not the most religious person in the world and I am not a fan of "God's children are all blessings."  I am more of the line that yes, all children are blessings and yes, I believe we all have a path and a plan in life and there are lessons to be learned at every turn, but I am not sure if this is "God" related, I don't necessarily use that label if you will.  But, I did believe that with all of our children, they are gifts, miracles and what happens happens and that is our life path.  Now is this a harder pill to swallow when you are faced with it?  Of course.  All that you believe gets tested.  You start wondering, should I have tested what would I have done?  Would that have been better? Would I have been what 9 out of 10 people in this country do and kill my boy?  The answer in my case is no.  I just couldn't.  I know that now.  I know that knowing wouldn't have helped me, I truly believe it would have been harder, I think the best thing was having him to breathe in to hold him to get through the crying and pain of it all.  It made having him easier.  I also never. NOT ONCE have thought life would be better, easier, if he weren't here.  It isn't true.  Now I do say it would be better without Down Syndrome, but not without Nolan and yes they are two different things.  When I first had him I had to learn the lingo, that you say, child with down syndrome not a down's kid or down syndrome kid, because, he Nolan, isn't just down syndrome.  His life isn't defined by an extra chromosome any more than yours is defined by your dad drinking or your mom being a yeller.  It affects you, molds you, but to let it define you, that's a choice.  And I think you'd be rather annoyed if someone went around calling you by something that is viewed less than favorably by the general public, like the "cancer lady" or "fat man"or the "drunk chick" it just isn't flattering and well isn't true.  So no my son isn't the 'downs kid".  He's Nolan first and then he's cute and then he has good hair and then he's got sweet tiny feet and then he's got chunky cheeks and then he's silly and then he's crawling and laughing and smells good and super sweet and loving and well then, maybe then after 24 more things he also has down syndrome.  So you see, it's pretty low on our list of priorities and do I wish the world got this like we do? Of course.  Did I get this a year ago when I saw someone of disability.  HELL NO.  So, I don't judge you, I don't blame you.  I was you.  I just ask you to see differently now. I ask you to see him how his brother and sister see him, with pure love and joy and they think they've never seen a sweeter baby in their life.  They love him with their whole heart.  Maybe someday they'll think differently, they'll be embarrassed or not want to have someone know that their brother has Down Syndrome.  I cringe for these days.  Not for Nolan, but for them, because it's a learning process to become a healthy, well-rounded adult.  And in doing that we all will have different tests and struggles and for my kids, I can only hope that they will pass that one with flying colors and they will come out on top, realizing it is the world that needs change of perspective not our Nolan that needs to change who he is.

So, where does all of this chat bring me?  Well.  To testing.  You see there is an early test now a Down Syndrome test that basically can be taken with a simple blood test and let you sleep a little easier that your new baby doesn't have it.  It's easy, can be done early and cheap.  What does that mean to a population that when people find out they are pregnant with a baby with down syndrome, 90% abort them, well it means just that, more abortions, less people like my Nolan.  I started thinking what does that mean for him?  Will he be alone in the world and completely eradicated?  Furthermore I thought, how is this whole, who's worth living and who's not, come to happen.  Is there some boardroom somewhere that insurance companies say, "OK well you can abort these babies at our hospital if ..." How do they determine this?  I just can't wrap my brain around it.  If you are too short, too tall, have 6 fingers, never talk, blind, deaf, autistic?  Anything but perfection?  I just don't get it.  I look at my Mr. Nolan and I think.  What's so wrong with him?  What's so bad? That he can't live alone one day?  That we all have to balance checkbooks?  I mean, seriously?  How many people live into their 40's with their parents by choice?  How many drug addicts steal and ruin their lives financially forever?  I just think if there were a gene for that, would you kill those babies too?  What about if we had a magic ball and you knew your child would die at 10 from cancer? Is that life not worthy because it's not long enough?  Costs too much to treat?  I don't get how or why someone can say all of this is OK?  I just really can't.  People say, well not everyone is financially able to take on Down Syndrome or help those kids?  Well, then people, none of you should have kids.  Because we as parents have no idea, where, how or when our children may die, get injured, change the course of their lives forever.  That is the role of being a parent.  We aren't here to simply have children that please us, that do what we want and make choices that we agree with.  That is the truth.  So, I see these tests, I hear of people getting amnio's on HEALTHY babies with NO RISKS and think for WHAT?  Because YOU can't handle the "risk" of having a less than perfect baby.  Then the sad truth is, you shouldn't be parents.  That risk, is with you at every moment of every day and all you are doing is eliminating a tiny tiny tiny percentage of issues or problems that your child may encounter and to me that is just ignorant and sad.

See this is where it gets dicey.  Because I know many of you that have had amnio's, testing, thought about or perhaps have had abortions, but I can't help but feel this way.  You don't have to agree with me, you can have your own opinions and make your choices that is your right.  I have always felt this way.  My son just really solidified my belief in faith. That whatever comes your way, you can handle it, you can choose to rise above it and embrace it around you.  Or you can let it define you and ruin your life.  That is a choice that I think is worth making.


  1. Grace I completely agree with you. We refused any testing with both Abby and Bennett, because it wouldn't have mattered either way we would've loved them just the same! I agree with you 100%!!! -Sarah Wickman

  2. Grace, we did do the testing but BEFORE we did, we had many discussions about why we were doing so and what we might do with any information we received. Since we are a family with a sibling with Down's Syndrome, we knew we would never choose not to have our baby for that or any other reason. For us it was a tool in which we would have the opportunity to be prepared. One of my nieces agreed with our view and was able to find out that her baby would be born with Cystic Fibrosis and armed with that information has had a highly successful pregnancy and first 4 months of life. Without that information, the outcome could have been drastically different. We are grateful for the opportunities and calming information that prenatal testing has brought our family. Obviously, it isn't for everyone, but our desire to be as prepared as possible given genetic markers that run in our families, was greatly served by science. And prayerful consideration before hand of our path.

  3. I hear ya, and I'm right there with you.

  4. I have been struggling with how to write down my emotions on the new early testing now available. Well said! I completely agree with you. I always bring up the "what if there was a test to determine if your child would one day have cancer or be paralyzed in a car accident?" question. I love the part about our role as parents. We didn't do testing either because we knew we'd love any baby. My doctor suggested for our next pregnancy we do the testing just to "ease our minds". We won't. I'd take ten more just like my precious baby girl. Great post!


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