Posts
Wednesday, December 16, 2009
Giveaway on Southern Savers
Check out this giveaway. I hope I win the silverware. My "set" is a hopeless mismatch.
Thursday, June 11, 2009
Monday, May 4, 2009
Thursday, March 26, 2009
Tuesday, March 24, 2009
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.
Read my comment here.
Friday, March 20, 2009
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.
Wednesday, March 18, 2009
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?
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?
Friday, March 13, 2009
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.
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.
Saturday, February 21, 2009
Celebrating Life
Tonight, tears come to my eyes as I think of Kira's parents in a hospital miles from here, grieving and hoping for their little girl. And I hold our little Priya a little tighter, and am a little more patient with her cries, and pick her up a little oftener, and change her diapers a little more cheerfully, and thank God a little more for today. None of us has the promise of tomorrow, either for ourselves or for our children. Life is a fragile gift. Yet its fragility does not mean we must tip toe through it, afraid of breaking it. NO!
The metephor that comes to mind is the zip line at Camp Andrews. I had heard about it many times, seen pictures of it, and thought it sounded like so much fun. Last summer when I went to Girl's Camp for a week as camp nurse, at about 6 months pregnant, I asked for the chance to try it, if it wouldn't hurt the baby. I was assured that it wouldn't do her any harm, so I donned the gear, climbed the scaffolding, sat on the edge of the platform, and...sat on the edge of the platform...and sat on the edge of the platform. It looked so scary from up there. Finally, in a burst of grit, I pushed myself off, and zipped screaming off into the night, over the lantern lit path, up into the dark woods, and back down to the disembarking platform. Was it ever fun! Over in a few moments, but oh the thrill of those moments! That is how I want to live life. Taking the plunge. Living it fully. Not holding back. Sometimes we forget, until a tragedy reminds us of how we want to live. Today I remembered again.
The metephor that comes to mind is the zip line at Camp Andrews. I had heard about it many times, seen pictures of it, and thought it sounded like so much fun. Last summer when I went to Girl's Camp for a week as camp nurse, at about 6 months pregnant, I asked for the chance to try it, if it wouldn't hurt the baby. I was assured that it wouldn't do her any harm, so I donned the gear, climbed the scaffolding, sat on the edge of the platform, and...sat on the edge of the platform...and sat on the edge of the platform. It looked so scary from up there. Finally, in a burst of grit, I pushed myself off, and zipped screaming off into the night, over the lantern lit path, up into the dark woods, and back down to the disembarking platform. Was it ever fun! Over in a few moments, but oh the thrill of those moments! That is how I want to live life. Taking the plunge. Living it fully. Not holding back. Sometimes we forget, until a tragedy reminds us of how we want to live. Today I remembered again.
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