To Tell or Not to Tell
I stole this title from another blogger. She was looking for input about how people handle telling others about their child having DS. I remember I wrote a whole long thing to her about how I am so open about Donna Marie’s DS and that it is really no big deal if I don’t make a big deal out of it myself, etc. This was months ago. NOW I remember that I was totally dreading telling my mother about my daughter’s DS when she was first born!
First some background information for all of you. I had no idea my daughter would have DS. I did not have the amniocentesis prenatally. Despite my age at the time (I was 2 months shy of 36 when she was born), I was totally unworried even though I knew the risk of DS increases with age.
My mother, on the other hand is a worrier. It there is nothing to worry about, she will find something. It is almost like a hobby for her. No, worrying is her vocation in life. If we tell her not to worry her response is, “If I don’t worry about these things, who will?”
During my entire pregnancy she would tell me she was having a terrible premonition that there would be something wrong with the baby. (Oddly enough she never had these premonitions when I was pregnant with my second child who is as we say “typical.” I don’t know if she had real psychic premonitions with my pregnancies or if she just had a lucky guess with Donna and then moved onto some new worry with my second pregnancy. Who knows? Back to my story.)
So Donna Marie was born and we had to wait for almost a week to find out from the chromosomal studies to find out if she had DS. (The test was ordered due to her low muscle tone, almond shape eyes, etc.)
My mom and I are very close and normally I tell her everything right away. Still I was waiting for the confirmation of the chromosomal tests to tell her. This is so uncharacteristic of me! Normally I discuss everything with her.
The reason I was waiting was I was convinced that the news would literally kill her. I am not exaggerating. She was under a great deal of stress at the time. My father was entering the late stages of Alzheimer’s and was still living at home under her care. (He lived at home up until his death in 2008) My mother was being treated with powerful steroid for temporal arteritis and was not in good health. She had been through rough moments in her past. She had breast cancer years ago, her oldest son had several brain surgeries as a child for a recurrent brain tumors, she along with part of her family had to run from her native Lithuania as a young girl during WW II, etc. etc. Still somehow the stress of my father’s illness seemed to be taking an enormous toll on her and she was very depressed. The steroids for the temporal arteritis were also contributing to the stress.
So, as I said, I thought the news would kill her. I even asked the pediatrician if she thought I would be able to pull off lying about it to my mother! (She told me, no. She told me Donna’s DS was pretty obvious and would only become more obvious as time went on. Although I must say, up until this point my mother was only puzzled as to why Donna Marie was so quiet and was sleeping sooo much. ) I remember that the thought of telling my mother was so awful I thought I would crack up. When it was time to finally tell her I went to her house with Donna Marie. I didn’t go by myself. I went with my husband, my mother in law and my best friend. They all already knew. Everybody knew except my side of the family.
After a good cry, my mother amazingly pulled herself together. As I said, she had been in quite a depression due to recent events before this news about Donna Marie’s DS. She seemed to just be barely drifting along. Surprisingly the news of Donna Marie seemed to push her out of it! She told me so herself. She said, ”I want keep myself well. I have to see how Donna turns out….. I am so worried.” It seems like her worry over how Donna Marie “turns out” has pushed her to keep going. It is now 4.5 years later and what I thought would ultimately kill her has possibly saved her. I would never have predicted that Donna Marie would have this effect on her. They share a special bond.
So, while I may have gone on and on in the past that sharing news of DS is a breeze and a wonderful opportunity to educate others, blah blah, I now remember and admit that it isn’t always so easy.
Uncategorized | Comments (4)Brooklyn Baby Disco helps NDSS….Join us!
Saturday afternoon is the new Saturday night for kids 6 months old to 7 years old. Baby Loves Disco transforms the hottest clubs into disco clubs for little ones during daytime hours. To honor the son (3 month old Henry) of one of their employees (Kara), Baby Loves Disco is dedicating their Dance for a Cause Event to the National Down Syndrome Sociey (NDSS). They will donate 5% of their ticket sales as well as 100% of the proceeds from their raffles, etc. The Brooklyn event is at Southpaw on 125 Fifth Ave in Brooklyn on Saturday Dec 5th from 2PM – 5PM. The cost of tickets is $12 per “walking human” in advance/online. (Enter promo code NDSS online to get an additional $2 dollars off ticket price.) “Non-walking” humans are FREE. Go to www.babylovesdisco.com for details. There will also be a Manhattan event honoring Kara’s little Henry and supporting NDSS on Dec 13th at Le Poisson Rouge, at 158 Bleeker Street. See the above website for details. Also check out Kara’s blog to read about Henry and the rest of the family at: www.threelittlekings.blogspot.com
Uncategorized | Comment (0)Dan Savage…….a real savage.
Some of you may be unfamiliar with Dan Savage’s writing. He is pretty famous for his ”Savage Love ” advice column among other things He is an author, journalist and author of many works. Known for his liberal political point of view and gay rights activism, his writings have been thought provoking, humorous at times and certainly controversial. In the past I have been intrigued by his work. However his recent article title, ” ‘Tard Supper” has really disappointed me.
Basically he has published an article about a piece of art work depicting the Last Supper in which everyone at The Last Supper has Down Syndrome. Personally I LOVE this portrayal because our loved ones with DS embody so many Christ like qualities. I don’t know if this is what the artist intended to portray. I don’t care. This is what I get out of the work when I look at it. I like it. What I don’t like is the title of Savage’s article, ” ‘ Tard Supper.” You can view the article and all the comments at this link: http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper
To come up with such a title out of ignorance and carelessness would be a minor offense. However, Savage has received so many negative comments and requests for a retraction of this title. There is no way that he can no longer be ignorant of the fact that he has dealt a cruel blow not only to those who are mentally challenged and can not always defend themselves, but to their friends and families as well. I can not fathom how a man who speaks out against slurs against the homosexual community can turn around and then use such a slur against those with DS. How can a man that demands respect for some be so disrespectful to others? True hypocrisy. What about the homosexuals within the DS community he has offended? (I guess he does not consider all of the homosexual parents of children with DS he has offended. I guess he does not care or even want to think of the homosexuals that have DS.)
I have left a comment about his hurtful title. Some will argue that Dan Savage is only being an advocate of free speech and is delighting in all this hullabaloo it has generated. Sure, free speech is important, but what about basic kindness, compassion and respect? Shouldn’t free speech be used responsibly? Some will argue that Dan is probably not even reading these comments and onto something else already. I don’t care. Some would say it’s best to just ignore him. Still, I say we have to stand up for our loved ones. I urge you to visit the link: http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper and share your thoughts as well.
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