It's Not Okay - A Lesson in Setting Boundaries

The past year has been one continued learning experience.  Just when I think I have my feet solidly under me, they get knocked out when I least expect it.  Since first receiving Joey's diagnosis of having Down syndrome at 13 weeks into the pregnancy via a CVS, I have spent most of my time trying to become okay with the diagnosis.  To accept it.  Now I'm at a place where I don't "see" that Joey has Down syndrome.  I just see Joey.  A little boy who had open heart surgery.  A little boy who works extra hard to learn to sit up.  To learn to swallow.  To learn to speak.  A little boy who gives my life meaning every single day.

There are days when I get sad or wonder if I am doing everything I can for him, but I don't regret his life or his diagnosis.  His diagnosis and his life has actually made me a better person.  His diagnosis has made me enjoy life more.  His diagnosis has helped sharpen the lens that I look at life through.


I try to be very open and non-judgmental when people ask about Joey.  It can be hard.  I don't want to live with my guard up all the time.  I don't want to be defensive and take harmless comments the wrong way.  I want to respond kindly and from a loving place instead of with anger and from a place of fear. 


On the other hand, I want to be Joey's advocate.  I want to be an advocate for Down syndrome.  I want to be a mama bear.  I want to protect him and anyone else who has Down syndrome.  


It is a thin line to walk.  It is a thin line that is ever evolving and changing.


I want to be a voice that is heard because it is calm, clear and reasonable.  I want to be a voice that is measured, but passionate.  


This reason I bring this is up is because of a pretty intense encounter I had a few days ago.  I had to take some time to digest what happened.  I had to take some time to try and find the deeper meaning.  To figure out why this particular encounter happened to me.  To see if there was some way I could make it into something more positive because by the time it was over, I was wiped out.  I wanted to go home and crawl into bed for the entire weekend.  It knocked me cold off my feet and as it happened it was so surreal.  I kept thinking to myself, "How do I get out of here?  How do I make this person stop talking?"


Here's the deal.  Words are powerful, powerful, powerful. To quote Mark Twain (saw this quote on Nuts About Nathan's blog): ”The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Last week I was in a social setting and talking to a person who is an OBGYN.  This person started asking me about the kids.  Then they started asking me about Joey.  Some rather pointed and personal questions.  Whenever one of these conversations start, I never know exactly where they will head.  Will it be a quick and lighthearted talk?  Will it go deeper into questions about Joey's health.  Will they ask me about the severity of his Down syndrome (no joke-- was asked how sever his Down syndrome was while he was still in utero)?  Will they tell me he has lost that "Down's" appearance (no joke-- this just happened today, a medical professional that we see actually told me that since they last saw Joey he has lost a lot of "that Down's appearance"-- I still don't know exactly what that means)?  This is what makes it tough.  I want to have an open heart and an open mind.  I want to be patient.  I want to help educate and not make people feel ashamed or ignorant when they ask questions.


What I know for sure now is that there are lines that are no longer okay with me to cross.  There are things that I am not going to talk about with a fake smile plastered on.  There are mis-statements that I am no longer going to let slip.  I pray for the strength, grace and courage to respond in these situations with a loving heart and without anger.


This particular conversation....with an OBGYN (not my OBGYN, but a professional OBGYN) went along these lines.


Them, "Did you know about the Down syndrome diagnosis before you had him?"


Me, "Yes."


Them,  "Oh, they are such happy people.  I really admire you for keeping the baby.  When I was a resident we performed terminations all the time without even thinking about it.  I performed one on a Down syndrome baby who was 20 weeks old.  I'll never forget that he was this perfect baby who was struggling to breath.  I never performed another one after that."


Me (in my head)---about to pass out.  In total shock.  Wanting to go crawl in bed and not get out for a few days.  Trying to erase the mental image a perfect, innocent baby struggling to breath.  Being killed for having an extra chromosome.  I thought I was going to vomit.


Then these words came out of my mouth and I still don't know how I was even able to speak, "You know, if you ever have a family who delivers a baby who has Down syndrome and they say that they cannot keep the child or deal with the diagnosis of Down syndrome, I hope that you will call me immediately.  We would adopt that child in a second.  Without a second thought.  Please tell your partners in your practice the same thing."


Them....looking shocked, "Really?  You would take another?  You know most of them are terminated during the pregnancy."


Me, "We would give that baby a home immediately."


Somehow I found a way to leave after this last part of the conversation and the minute I got safely inside my car I crumpled into a pile of tears.  Hyperventilating tears.  My heart twisted in knots and I just drove because I didn't want to get home too fast and have my two little guys see Mommy so upset.  


I called a family who lives near us and who's 29-year-old son has Down syndrome.  I just need to talk to someone who has faced this kind of ignorance.  Someone who has had to endure these types of invasive conversations.  The words of advice were heartfelt.  I have a new response to when someone tells me that people who have Down syndrome are "so happy".  I will tell them the truth.  I will tell them it's a myth.  


As far as conversations about abortion--well, I just hope I never have to go through that again.  In the future, if such a painful conversation comes up I have promised myself to ask the person to please stop and to tell them that I don't want to hear anymore.


However, in this case.  As angry as I was at this person and as much as I could not understand why they would ever in a million years feel the need to say such things to me, I believe in my heart of hearts that his person was confessing.  As painful as it was for me to hear about these terminations of babies, I cannot imagine being the person who was doing it.  To live with that guilt is more than I can imagine.  


What's even more scary is that there are medical companies who are busy working on diagnosing chromosomal differences (they would probably call them "defects") earlier and earlier in pregnancy.  The purposes of these new non-invasive testing methods is to provide termination options earlier and earlier in pregnancies.  What does this mean for Joey?  What does this mean for all of us?  It's a slippery slope, my friends.  One day Down syndrome is deemed not worthy of life, when is it going to be farsightedness?  Cancer?  Alzheimer's?  *For an excellent discussion on the ethics of this type of testing, see Barbara Simpson's Article "Hitler Would Love It."


Did the doctor who told me all of this want me to admire them for not performing more terminations after the last one where the baby who had Down syndrome was struggling for his last breath of life?  Did they want me to know that they had committed these crimes against humanity, but that they now know it is wrong?  It took me a little bit of time, but that is what I've chalked this encounter up to.  A confession.  


It's an encounter that was painful and that tore me apart.  BUT-- it did give me more cause to address the absolutely ridiculous rate of babies who have Down syndrome who are aborted just because they have one extra chromosome.  Just because they are not what society deems to be "perfect children".  Just because they may have some extra medical issues.  This encounter actually empowered me to establish some ground rules for myself and to really think about when I need to say, "It's not okay."

• It's not okay to lump everyone who has Down syndrome into one stereotype of "happy people". As parents of a child with Down syndrome, we hear this about once a week, if not more.  As if being "happy" all the time takes away the pain of knowing our children will have to fight extra hard to be accepted by society and to be accepted as individuals.  Let me tell you.  It does not make any of us feel better and it is a complete myth.

• It's not okay to terminate a baby just because they have Down syndrome.

• It's not okay to tell someone that it is "admirable" that they did not terminate their pregnancy once they knew their baby had Down syndrome.  What kind of world do we live in where people find it admirable to keep a baby who has some medical issues?  As any parent will tell you, no child comes with any sort of guarantee.  There is also no such thing as a "perfect" person.  

• It's not okay to tell me that you used to medically abort babies who had Down syndrome, but that you don't do that anymore.

• It's not okay to selectively choose who gets to live and die because of their genetic make-up.  We've lived through that kind of historical precedence.  Just read a little about Hitler and his Action T4, which was the name for Nazi Germany's eugenics-based euthanasia program during which physicians killed approximately 200,000 mentally or physically handicapped individuals.   

Those are my new boundaries and this beautiful little boy is worth setting them.