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.”

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...