Wednesday, March 28, 2012

Down Syndrome Story by Charlotte Fryman

Wunce there was a Mommy that had a baby in her belly. She fund out it was a boy. She dsided his name was Jon. Jon was a down sidrowm. The mom got wureed that he wuld die. Then one of her friend told her that down sidrowm can't die. Ok said Mis Sinda* I got that. So Mis Sinda went to the doctr. Then little Jon got puled out. Jon cried and cried. They went home and they got happy. The End.
* Halfway through Charlotte named the mom "Miss Sinda".

Tuesday, March 20, 2012


It finally happened, that breakdown many people seemed to be encouraging me to have. I stood alone in the shower, the only place I get to be alone any more, and the waves hit me like a sonic force in the chest. I sobbed, just letting the water pour over me as the thoughts tumbled free of the place I had stored them. It just was too much. All of it. Everything since the doctor told me that Mariana probably had Down's syndrome hit me in thought after thought.

But it's not what you think.

It was gratitude. What hit me was what could have been. It started with a friend posting the imprint of her baby's feet on her Facebook wall. A baby that died of anencephaly. One of two that she lost to the disorder. The feet, you see, looked just like Mariana's. The big toe was very large with a wide space between it and the second toe. Those footprints haunted my thoughts for days. Later I was back on Facebook only to read a blog post from another friend. Her baby has been diagnosed with Trisomy 18, a condition that is frustratingly called by the medical community as "incompatible with life", though there are a few hopeful cases. Trisomy 21. Just three chromosomes down the line. How could we be so lucky?

In that moment in the shower the "could have been" thoughts rolled over me like waves in an angry ocean. My soul was tossed over and under and scratched by the sands of reality and the reality we had escaped. Our baby, our beautiful girl, seems so very healthy. So much that if we hadn't had that blood test to confirm it, we might question if she really had this condition. Her face at certain angles looks just like Kate's did. Her fingers are so long, and her tongue so utterly perfect. She keeps doing these things we were told to expect to have trouble with. How could we have this perfect little being? How could the world tell us she is a non-person? How did we escape the gruesome realities that exist in child bearing? It seemed like I was Peter walking on the water and the reality of what could be threatened to swallow me like the sea.

I spent several minutes in that space of could-have. Yet I never felt lonely. I felt blessed and chosen and tiny. I asked why we would be chosen, yet spared. Why was our baby loved when so many are not? Why did we have so many moments of grace through all of this, when I knew, after reading many accounts, that so many parents have terrible grief and guilt? How did we qualify for these blessings? Wait, no, I knew that I sure as hell didn't qualify for the generosity that God has flooded us with. Why, God, why do you care so much, give so much, and comfort us so much?

There is a line in the Narnia series where Aslan tells Lucy that no one gets to know what would have been. Sadly, that isn't the case for could have been. Yet we don't get to know why it wasn't. We don't get to understand why our story is what it is, or how God doles out his grace. All we can know is that none of us deserve it. All we can do is is accept it and try to be better for it. In the end we can only shine the light on God's great works, and let it be enough.

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.

An Introduction..

We had our fifth child. We knew she was a girl, that she was oh-so-very breech and that I would need a c-section. We knew I was terrified of any kind of surgical procedure thanks to a root fear of anesthesia. We knew a lot, but we didn't know our daughter had Trisomy 21, aka Down's syndrome.

Now we know. Now we deal with it. Now we face the world with a whole new set of skills to discover and information to learn. Now we know that she, Mariana, isn't so much a Down's syndrome baby as our daughter who has Down's syndrome. We know that there is no formula to tell us what her level of function will be, nor is there any way to tell who she is until she lets us know. Just like the rest of our children, we have to get acquainted, observe the strengths and weaknesses, and find ways to live a life to our fullest potential, together.