For one day let's put aside the never ending therapies, anxious doctor's visits, helpful support group meetings, heated discussions over the wrongful use of the word "retarded" and just revel in their beauty...
Friday, March 21, 2008
Friday, November 16, 2007
I love school!
It's been almost 2 and a half months now that Luigia has started school. The first week was difficult for her to adjust: going from being home with mama and her little brother to being at school with strangers who demand weird things from you 5 hours a day can be a hard transition...Now she is feeling it. She gets on the bus in the morning, she is leader of the line at school, she comes home and demonstrates her new dance moves (they have dance class, gymnastics, art class, music and movement, and yoga!) and she is even getting potty trained! Most importantly, she made friends: Ryan, Jalen, Joanna, Luis, Anselm and she came to trust other adults who now care for her too: Miss Rachelle, Ruthie and Kwamina.
Tuesday, September 4, 2007
Luigia's going to school!!
I never thought this moment would happen, but it finally did: my sweet little girl is going to school. Tomorrow morning is her first day. She will be attending the Lamm Institute Preschool in Downtown Brooklyn from 9:00 to 2:00. She and I are going to take the subway to school for a few weeks to get her acclimated with everything, and, once we all feel more comfortable, she will be picked up and dropped off by a yellow school bus. What a big change it will be for everyone! But I think she'll do better than me and her brother...
Anyhow, good luck with school Luigia, I love you.
Thursday, May 24, 2007
"A Mother's Love"
This one is to all the mothers; a beautiful essay by my dear friend Laurie...(The three little monkeys are Ava Rose, Luigia and Andoni)
A Mother’s Love
Laurie McIntosh March 2005
When our first child was a born a few months ago, my husband and I received a lot of what we referred to as “funeral calls” – the plodding, joyless voices speaking in hushed tones to our answering machine: “Hi, Laurie and Ira. We heard about the baby. We just wanted to call and see how you’re doing. Call if you need anything. But don’t feel like you have to call…”
How are we doing? We’re ecstatic! Hell, I just gave birth to a baby – a BABY – our very own little girl who is positively gorgeous and adorable and who we are both madly in love with.
You see, our daughter Ava Rose was born with Down syndrome as well as some of the heart defects which we quickly learned are very common in folks with Down syndrome. And though I never would have asked for my daughter to spend the first 18 days of her life in the Neonatal Intensive Care Unit, everything was really okay.
When I got around to returning those funeral calls, my friends’ voices audibly brightened and their nervousness fell away as they listened to me gush in a most bubbly fashion about our brand new baby girl. Yes, gush. Yes, bubbly. Isn’t that what every new mother does?
I thank my husband for helping me realize that I ought to cut all those “funeral callers” some slack. Heck, without living the experience myself, I never would have known how best to speak to someone who’s just given birth to a child who is genetically something other than “normal”. In fact, when I was five months pregnant with Ava Rose, a friend of mine gave birth to a child with Down syndrome. And as my midwife, who had just delivered my friend’s baby, urged me to get amniocentesis, I lay on the examining table, tears streaming from my eyes, trying to imagine what that must be like. How do they break the news? Do they wait a few hours to give you a chance to bask in the joy of new parenthood, or do they just come right out and tell you? Once they tell you, do you still get to be joyous and fall in love?
My answer is an unequivocal, hearty YES. Yes! A mother is a mother is a mother. And a mother’s love, well, that is a whole species of love unto itself. Species? Why be so limiting? It is a world unto itself – a vast landscape, with mountains and oceans and meadows where wildflowers of every color and shape dance in warm breezes. And in one of those meadows is a young girl, barefoot, skipping and free, laughing and golden. Though she may not know it yet, that love is within her. She tries it out on other things first: the spider whose web she spares, the little red-bellied snake darting among the rocks and grasses, her baby brother, the sun, a teddy bear, the trees. It is a love that is simply grateful to these beings for simply being.
Oh, but it is so much more. It is a love that makes you want to dance and smile, a love that teaches you how to forgive -- really forgive. It allows you to drag yourself out of bed at three in the morning, night after night. It is the only thing in your life that has allowed you to give up caffeine.
And it is still so much more. (Is there a way to describe what you feel when laying in bed nursing your sweet little warm infant, she gazes into your eyes and beams the brightest smile at you?)
So are we happy about being the parents of this child? I don’t know of anything I’ve ever done in my life that has felt this good.
Oh, by the way…when you call -- the word is “Congratulations.”
Laurie McIntosh March 2005
When our first child was a born a few months ago, my husband and I received a lot of what we referred to as “funeral calls” – the plodding, joyless voices speaking in hushed tones to our answering machine: “Hi, Laurie and Ira. We heard about the baby. We just wanted to call and see how you’re doing. Call if you need anything. But don’t feel like you have to call…”
How are we doing? We’re ecstatic! Hell, I just gave birth to a baby – a BABY – our very own little girl who is positively gorgeous and adorable and who we are both madly in love with.
You see, our daughter Ava Rose was born with Down syndrome as well as some of the heart defects which we quickly learned are very common in folks with Down syndrome. And though I never would have asked for my daughter to spend the first 18 days of her life in the Neonatal Intensive Care Unit, everything was really okay.
When I got around to returning those funeral calls, my friends’ voices audibly brightened and their nervousness fell away as they listened to me gush in a most bubbly fashion about our brand new baby girl. Yes, gush. Yes, bubbly. Isn’t that what every new mother does?
I thank my husband for helping me realize that I ought to cut all those “funeral callers” some slack. Heck, without living the experience myself, I never would have known how best to speak to someone who’s just given birth to a child who is genetically something other than “normal”. In fact, when I was five months pregnant with Ava Rose, a friend of mine gave birth to a child with Down syndrome. And as my midwife, who had just delivered my friend’s baby, urged me to get amniocentesis, I lay on the examining table, tears streaming from my eyes, trying to imagine what that must be like. How do they break the news? Do they wait a few hours to give you a chance to bask in the joy of new parenthood, or do they just come right out and tell you? Once they tell you, do you still get to be joyous and fall in love?
My answer is an unequivocal, hearty YES. Yes! A mother is a mother is a mother. And a mother’s love, well, that is a whole species of love unto itself. Species? Why be so limiting? It is a world unto itself – a vast landscape, with mountains and oceans and meadows where wildflowers of every color and shape dance in warm breezes. And in one of those meadows is a young girl, barefoot, skipping and free, laughing and golden. Though she may not know it yet, that love is within her. She tries it out on other things first: the spider whose web she spares, the little red-bellied snake darting among the rocks and grasses, her baby brother, the sun, a teddy bear, the trees. It is a love that is simply grateful to these beings for simply being.
Oh, but it is so much more. It is a love that makes you want to dance and smile, a love that teaches you how to forgive -- really forgive. It allows you to drag yourself out of bed at three in the morning, night after night. It is the only thing in your life that has allowed you to give up caffeine.
And it is still so much more. (Is there a way to describe what you feel when laying in bed nursing your sweet little warm infant, she gazes into your eyes and beams the brightest smile at you?)
So are we happy about being the parents of this child? I don’t know of anything I’ve ever done in my life that has felt this good.
Oh, by the way…when you call -- the word is “Congratulations.”
Saturday, May 12, 2007
Down Syndrome Testing
Luigia's little friend Sophie is featured in the video "Difficult Diagnosis" you can watch on the link: http://www.nytimes.com/2007/05/09/us/09down.html?ex=1336449600&en=4e95d7e65c3cf9d1&ei=5124&partner=permalink&exprod=permalink
The article "Prenatal Test Puts Down Syndrome in Hard Focus" by Amy Harmon from the New York Times raises a few ethical/medical issues that are new to the population with Down Syndrome and their families. The new widespread prenatal screening of every pregnant woman in the United States may change our children's world and our social landscape. As said in the article, parent advocates are not "pro-life" or trying to "force" anyone to have a baby with Down Syndrome. Their attitude is more a reaction to the perceived medical community's rejection of their loved ones.
"What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?"(Harmon, p.1) Here's my question, "what developmental age equivalent does ANY human being reach? Are we on the road to genetically modify our world so that every one of us looks as similar in shape, form and color as do the genetically modified tomatoes sold at your neighborhood Keyfood? Would parents of a child contracting Leukemia at seven years old opt--had they known it before hand--to terminate the pregnancy? Maybe we should just focus our concerted efforts towards accepting children and people with disabilities, promoting their role in society, improving their health and longevity instead of finding ways to eliminate them? How about starting here: make people around us aware that using the word "retarded" in a derogatory manner is as offensive as using the N-word, the B-word or any other word to demean and mock a certain group of people.
Sunday, May 6, 2007
Preschool
As Luigia is aging out of Early Intervention, we have to find a preschool for her to attend next September. It is quite a challenge. So many things one has to take into account: half or full day programs, busing, lunch, rest time, teaching philosophies, therapies and other services, student body, teachers, assistants, waiting lists...Enough to make one dizzy. Visiting several schools, far and close, from our home helped us narrow down what we would prefer for Luigia. Next step is securing a place for her in the best preschool we could find (a beast in itself). Luigia, evidently, is not worried about it. She just wants to enjoy the park, every minute of these wonderful Spring days...
Monday, March 26, 2007
Luigia and Fiona
Today Luigia made a friend at the playground. She is a sweet two year-old named Fiona. She had spotted Luigia a few days ago and had come over with a huge smile that invited her to play. But Luigia, being her usual extreemely bashful self, turned to me and screeched to get picked up. This morning, Luigia was busy drawing with some chalk when Fiona saw her. She came over; Luigia looked up at her and smiled. They sat and drew together, exchanged chalk; then they went on the swings together (Fiona "had " to sit in the swing next to Luigia's). Finally, they took turn going down the slide.
I had been trying to get Luigia to socialize more with other children her age. Even though she is very friendly with adults, she has always exhibited fear of other children. Why is that? Does she not trust them? Does she not trust her ability to get away fast enough if needed? Is it because she cannot communicate very much yet? Whatever the answers are, today was wonderful proof that patience is all it takes. When I was swinging Luigia, I told Fiona's babysitter, Rosa, that Luigia never played with another child for such a long time before. Rosa told me that Fiona was the same way, but that when she saw Luigia the other day, she told her "I want to play with her." Maybe all Luigia needed was to find someone with her sensitivity...
I had been trying to get Luigia to socialize more with other children her age. Even though she is very friendly with adults, she has always exhibited fear of other children. Why is that? Does she not trust them? Does she not trust her ability to get away fast enough if needed? Is it because she cannot communicate very much yet? Whatever the answers are, today was wonderful proof that patience is all it takes. When I was swinging Luigia, I told Fiona's babysitter, Rosa, that Luigia never played with another child for such a long time before. Rosa told me that Fiona was the same way, but that when she saw Luigia the other day, she told her "I want to play with her." Maybe all Luigia needed was to find someone with her sensitivity...
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