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.
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 : )
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