Thursday, August 1, 2013

The Choice

I had what I consider a deep a conversation with a new acquaintance the other day.  That conversation won't leave me.  It continues to stick even days later.  The conversation wasn't bad.  In fact, I rather enjoyed it (for the most part).

I'm guessing it was a cultural thing, but the woman asked such intimate questions without hesitation or reserve.  I grappled for answers, not because I didn't want to share, but because they made me think.  I like that!

It is one question in particular that lingers though.

She asked me about the Dancing Queen and whether DQ would need other surgeries.  I usually cringe at that question--there is so much to explain so that I don't get people second-guessing our decision.  But, with this woman, the answer seemed to come easily.

Then she asked if I had known about DQ's heart defects when I was pregnant.   I explained that, yes, we knew.

Then, without reservation or pause, she asked why I didn't terminate my pregnancy if I knew.

Of course I knew how to answer the question.  I was asked at the time if I wanted to terminate my pregnancy.

The woman wanted to know if it was a religious decision.  I admit, I laughed at that.  But I told her what I told the genetic counselor 5.5 years ago: Ending my pregnancy was never an option for me.  DQ was my baby before I was pregnant.  I loved her from the moment I felt the pangs of illness and knew that I was pregnant.  There was never a choice.  I had to fight for my baby and give her every chance at life.

I think it was really hard for this woman to understand.  I don't know if it was cultural or because she has not had a child of her own or if it was something else entirely.  I know what she perceived about my life scared the hell out of her.  But she doesn't know DQ, doesn't know the smiles, the love, the hugs.  She never saw DQ dancing in a hospital bed or felt the weight of her hugs.  All this woman knew about was surgeries and hospice.

But I still think about that question each day.  How dare anyone question whether my daughter ought to have had the right to live!

I have no regrets about having DQ.  She, TRex, and MS are the best parts of my life.  Do I wish DQ didn't have to suffer so much pain?  Do I wish we didn't have to think about her dying?  HELL, YES, TO BOTH!

But ending my pregnancy would not have been right.  DQ has so much more joy than pain*; so many more smiles than grimaces; so much LIFE.

And no matter what I have done in this world, my daughter has done more.  I may be an attorney with an "important" job, but she is the one who inspires.  She brings joy.  My life would not have had the same meaning, the same depth without her in it.

If I could have one wish for the world, it would be that everyone understands that no matter how small you are, how short your time, or how alone you feel, you CAN make a difference.  Touch one soul and you can change the world.  I know it is possible.  My daughter has proven that to me!


* Or at least she doesn't let the pain take away from her joy. I don't know which.


  1. DQ has brought joy far beyond the walls of your family life. I am a better person for knowing her. Each photo that you post brings gladness to my heart! Her smiles are infectious. I wouldn't miss them for anything.


  2. This is beautifully written. I have a child with Down syndrome, and you stated so eloquently what I often think when people question whether I had a prenatal diagnosis.

    1. Thank you for the compliment and your comment. It got me thinking a lot. I've been asked probably a hundred times if I knew about DQ's dignoses in utero, but this one conversation was the first time that I ever felt someone was questioning my decision not to terminate. Gosh, I never even considered that someone would think that AFTER my daughter was born and HERE. I guess it is along the same mindset of people thinking we are heroes for taking care of our special needs children (which this same woman said during our conversation). I'm not a hero. I'm just a good mom doing what I have to do to give my kids a good life--same as most parents. Yet, people don't get it. *Sigh*

  3. - it's been a while. glad to see you are still blogging.

    1. oops - there was also supposed to be a *hug* in there too

    2. I get on here from time to time. I hope all of you are doing well!

  4. Oh, I know this conversation so well. In France, they would have found my mermaid's MLD. I hope I would have been as wise and brave as you Mom on a Line "if I had known." I always tell people, including someone from Boston Children's Hospital just recently, that the world might find it easier and more convenient for my daughter not to exist, and ome might even view it as progress for children like our daughters to be saved this suffering. And yet, I must disagree, how could the world be better off without DQ or my mermaid? We cannot be human without love and with mothering comes loss and is inevitable.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
Related Posts Plugin for WordPress, Blogger...