Breaking Hearts

Saniyah Chantée Metzger
August 29, 2007-March 26, 2009

We love you, Niya.

Something new

I did something today I've never done before. I sent a comment to the Leonard Lopate show on WNYC, and it got read over the air. I'm very happy.
Read my comment here.

Yesterday, we resumed our monthly habit of a "Quiet Day". Our lives get so busy that we have found this habit to be a haven of rest in the hectic schedule. It gives us an opportunity for one day a month to set time aside to communicate with each other, and with God. Our normal destination is Bayard Cutting Arboretum, on Long Island, but accessible by train since we don't have a car. This was our first time back since Priya was born. Unfortunately, it rained, keeping us indoors in the little cafe most of the time. We did venture out and enjoyed some signs of early spring. A daffodil here. A patch of snowdrops there. A shrub or bush pushing out shoots. Mallard ducks chasing each other around the pond in mating rituals. Robins. Today I realized there could have been things worse than the rain yesterday. Today it snowed!


















Today I felt loved when a bouquet of flowers arrived at my door from the ladies in our small group. I've been sick, and missed the last two Sundays of church, and our small group meeting on Sunday evening. Thanks, my friends! I love the lemons in the water. The accompanying note said something about making lemonade out of lemons.

Morning thoughts

Two Scriptures spoke to me this morning.

John 6:27
Do not work for the food which perishes, but for the food which endures to eternal life which the Son of Man will give you, for on Him the Father, God, has set His seal.

Psalm 101:3
I will walk within my house in the integrity of my heart.
I will set no worthless thing before my eyes.

As a stay at home Mom, those both speak to me right where I live. The verse from Psalm 101 especially spoke to me. Am I the kind of person within the privacy of my own home that I want others to think I am?

Thoughts, you stay at home moms?

Dragon Bites

I nearly cried today when I got a letter from Deborah Raymond and the rest of the research team at Beth Israel Medical Center. They have found the gene that causes dystonia in our family. For those who don't know, my family has a rare genetic disorder called dystonia. Quoting from the research article in Nature Genetics (read the abstract here), "Dystonia is characterized by twisting movements and abnormal postures." My father has what is known as generalized dystonia. He has a sister who has blepharospasm, abnormal contractions of the muscles around the eyes. I have a couple cousins with various forms of dystonia, and Dad had some cousins and an uncle with various forms. Our extended family has been involved for quite a few years (I'm guessing around 15-18) with the Dystonia Foundation, a group of wonderful researchers who have been studying this disease. They came to several family reunions. I remember the first time, when I was about 15. They took blood from everyone, and videoed all of us doing odd things like drawing circles, walking barefoot, and reading a paragraph about rainbows. Over the time of our wedding here in NYC, several of the relatives participated in brain scans and other research, since the Foundation is centered at Beth Israel. I participated at a later time.

Dystonia has been part of our family for so long that I almost forget not knowing what it was we were battling. My father thought he had polio when he was young, until my Aunt Flo began piecing things together and got the whole family introduced to the Dystonia Foundation.

Like a dragon under a bridge, dystonia is there. Is it going to jump out and bite me or not? Since my father is a known carrier, I have a 50% chance of being a carrier. If I am a carrier, I have about 60% chance of developing symptoms, and 50% chance of passing it on to each of my children. If I am not a carrier, I will do neither. So far, thank God, neither of my siblings nor I have shown any symptoms. Will our children? No one knows. Yet.

But now, with the isolation of the dystonia gene, genetic testing is possible to determine whether or not one is a carrier. Will I or won't I get tested? I don't know. At this time, knowing or not knowing doesn't affect treatment of the disease. I vacillate between wanting to know and not wanting to know. I look at our beautiful daughter and hope and pray that I am not a carrier.

Not that having dystonia is a ticket to a useless life. Absolutely not. My father is one of the most wonderful people I know. His courage and indomitable spirit have inspired many. His humor is some of the funniest I've ever seen. He knows how to laugh at himself, and has taught his children the same. He cares about people, really cares about them.

My cousins who have dystonia are both beautiful people. One is the mother of three children, and is doing a wonderful job raising them. The other is a missionary, full of life and inspiring in her care for others.

Nonetheless, I still don't want to dragon to bite me. Or my children.

I nearly cried today when I read that letter. I'm so thankful for the faithful researchers at Beth Israel. Maybe someday there will be a cure when the dragon bites.