Monday, March 19, 2012

Ignorant Bliss

 The following is a Facebook Note that I wrote shortly after we took Mariana home.

The invasive questions I have been asked since Mariana's diagnosis we're, at first, a huge shock. The stand out is, "Did you know she was Down's?" It surprised me because I can't think what difference it would make to anyone but our family. I am also a little confused by the reaction when strangers find out we didn't test. They feel sorry for us. Let me tell you why no one should feel pity that we didn't know.

I am not opposed to prenatal testing. People handle information differently, I have three friends who are grateful they knew prenatally that their babies were facing challenges. I am glad they were able to find out and cope. But that isn't exactly how I work.

I was blessed to have had four typical babies. I learned how useless it is to fantasize who that person inside of you is. All of them were different than my imaginings, and wonderfully so. They are different from one another and each has helped me become a better woman by virtue if being themselves. So, with Mariana, I never tried to imagine her. I anticipated getting to know her, and I couldn't wait. This gave me the blessing of never having to mourn a mythical baby. Many parents of disabled children go through a grieving period for the child they thought they would have. Their grief is real and I believe God's grace protected me from this pain.

What I really think would have happened had I known Mariana had Downs syndrome is that I would research, and I would anticipate having a typical Down's syndrome child, and I would worry for the rest of my pregnancy. You see, I would stop treating my baby like an individual, and instead expect a series of symptoms would define her. By not knowing I have been blessed to learn who my baby is, and it's not a person defined by her condition.

The doctors told me she had a good chance of heart defects, she doesn't have any. I was told she may be deaf, she isn't. And I begged to nurse her, but everyone told me she would need speech therapy to learn how to nurse. Mariana was a natural the minute I offered the breast. As one nurse put it, Mariana hasn't read the manual. She is so much herself, and she happens to have 47 chromosomes.

It is not insignificant that Mariana has Down's syndrome. It simply is not the full picture of the girl. I have good reason to believe that fear for my baby would cause me to limit my ability to get to know her so quickly. Not knowing what she had opened me up to who she is.

Not knowing showed me just how much God was protecting us. After the neonatologist told me of his suspicions, I immediately counted the times God intervened on the behalf of my baby. After all, I was planning a birthing center birth. Mariana needed to be born in a hospital. I did every sane and insane thing to get her to turn head down, but she remained breech. I was terrified of a c-section, but I could see the hand of God in all of the things that kept our child safe.

In not knowing I was reminded of God's real presence in our lives. I learned my child's diagnosis wasn't a definition of my child. I learned why I have been blessed with such exceptional children, family and friends. In the light of my child's birth the pieces of the mosaic make a gorgeous masterpiece. That masterpiece created by God is still in progress, which I why I don't need pity. What I sure would like is company in admiring the work of God.

1 comment:

  1. I did not know that my daughter, Ella Grace, would have Down syndrome until she was born either. And, I am glad too. I would have been so stressed out and focused on every bad thing that she COULD have. I did have a hard time when she was born coming to grips with it all, but I'm happy for the way it all occured : )