Friday, April 27, 2012

Life is Hard, Try Harder

I woke up to realize I am walking in a minefield. There are so many rules and regulations to talking about Trisomy 21. There is the nagging feeling not to complain too much or discuss the real fears that come with loving a child like Mae because it may give argument to the side that views the abortion of our babies as a valid choice. There is the knowledge that most of my anxieties do not help me parent Mae. I am aware of some things I have to mention to the pediatrician. None of them are threatening or emergencies. But I have to fight with the devil of anxiety every day, countless times over. And there is the feeling of being responsible for changing the opinions of the individuals who believe Mae shouldn't have been allowed to live.

I am struggling with that last one more than the others. For one, I want so badly for the world to see Mae the way my family does. She's gorgeous. She's a gift. She's perfect. There aren't words to tell the world who Mae is and how integral she is to our family. When I first felt her cheek on mine I had the most forceful urge to grab her and care for her my self. I needed to love on her like I needed air. When I saw her in her warmer I felt like the missing piece to our family, the piece we felt was missing when we decided to have another baby, was finally in place. I can't explain how exactly right Mae is while most people focus on what is wrong with her. So much of me wants to keep to ourselves any challenges we face with her because I am defensive of her right to be difficult to raise.

It matters to me what others think of Mae because it is a life-and-death opinion. Even typing that makes me want to scream. A woman I was having a conversation with once told me that she would abort a Down syndrome baby in a minute. I was disgusted. This was a woman with children, who knew the power of loving a helpless little person! I don't recall the discussion verbatim, but I do know that when I expressed shock she defended herself by telling me about a friend or family member who struggled everyday with her child and claimed the child was miserable and would be better off if she were never born.

I don't know the people she was talking about. I probably I rely too heavily on quotes from Dr. Lejeune, but he spoke the truth when he said, “People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!’ It cannot be denied that the price of these diseases is high—in suffering for he individual and in burdens for society. No to mention what parents suffer! But we can assign a value to that price: it is precisely what society must pay to be fully human.” Humanity and compassion come from caring for someone less fortunate. Imagine how more humane our culture could be if everyone were willing to bear the burden of each other's deficiencies. Instead, like a bunch of quitters, we are encouraged to throw our hands up and say, "It's too hard." 

We admire those who overcome adversity. We look up to athletes who come back from really bad setbacks. We cheer the single parent who figures out a way to stay home and start a business. We love it when someone who is told, "You can't!" flips the world the bird and does it anyway. We are inspired by the person who never quite accomplishes his goal, but also never gives up. The guy who is willing to die trying-we love that guy. And who doesn't love the Robert Downey Jr.s of the world, who screw their own lives up, have a little "come to Jesus" with the mirror, and make it right? 

But we've started to become the people who cower in the face of a challenge. We no longer look at the mountain as something that must be climbed, but mill about the base and in the valley. And what do we miss when we don't climb the mountain? Why, we never see the full beauty of the valley in which we live! We look at a disease or a defect and decide that it's better to kill the person suffering than fail at trying to cure him, and we miss his contribution to our lives. Is that who we want to be? Is that how we want to raise our kids? Fearful and weak and missing out on the most beautiful parts of life? 

No, I can't change the opinion of the world. What I can do instead is live unafraid and undaunted by the weakness in our world. I'll put my trust in the strength of God when I'm too weak and I'll keep rejecting the idea that failure is the worst thing that can happen. Maybe there will be one person who sees this and changes his opinion. Maybe I'll just raise a bunch of little people who share this attitude. As far as I am concerned, it's a win-win.


  1. So beautiful, Barbara. You and Scott are wonderful witnesses by your love and care for all of your children

  2. Anonymous6:02 PM EDT

    "No, I can't change the opinion of the world..."

    To channel and paraphrase my Mom..."Bullsh*t!" (more like quote than paraphrase...)

    Wonderful, sweet, butt-kicking witness! Rock on, sweet Mae!