Friday, March 30, 2007

Bad Mommy?

Well, it's official. The flu has hit our house. I don't mean the gastro thing that people call the flu. I mean the full blown Influenza A flu. As the dr. described it, it's like your worst cold ever multiplied by 10! That plus a fever up to 105! And of all people to get it, C. The poor little think is miserable. We are treating her with Motrin and Tamaflu and just have to wait it out for the 5 or so days.

Of course, the dr. came in with the results and first question... did you get the flu shot for her. No, I said. Doogie Howser just gave me the look like, see! (I love this guy but he is crazy young) I explained that if they would get the mercury free version I'd pay for it out of pocket but I will not inject mercury into her. He explained that it's a very small amount. Yes, I do know that. I then explained that we KNOW C will have cognitive delays. I have no intention of putting something into her that may (I will say may until I know 100%) cause further problems. If I had it to do all over, I would do it the same all over again. I am willing to go through 5 days of miserable (I have already been thrown up on 3 times) for a lifetime of not wondering if I should have given the vaccine. Luckily Doogie did say that next year they will be getting some mercury free so I will be the first in line with my checkbook if needed. I stick by my decision but to then go to the check out desk, have the same conversation with the receptionist, then the pharmacy tech... listen people! When it's your child with the delays, it's your choice to make. I made mine and I'd do it again!

I am a good mommy who only wants what is best for my girl. I have a medical background and go into these things with lots of thought. Quit asking me ok?

Well off to get some Motrin into her and clean up the messiest (yet still cute) nose I have ever seen!

Wednesday, March 28, 2007

Preschool? She's too little for preschool!

Well, I have to say, 4 years ago, I didn't think I would ever be sending a little one off to preschool. Well, the time is coming. C is finishing up this school year in the Early Intervention program and in the fall she will graduate to the PAL (play and learning) program! Yep, my little peanut is going to preschool.

We had a transition meeting tonight. That means a meeting to set minds at ease, to help with transition, to make the change less traumatic... for the PARENTS!!!

C will be riding the bus come fall! She is barely 25 pounds and she'll be riding the bus. I will probably be following the bus in a little convoy of other parents.

She will LOVE preschool and even more, I know she will LOVE the bus ride.

My little one is growing up and I don't know if I am ready yet.

Tuesday, March 27, 2007


ok... I admit it. (blushing out of shame) I have a new show that I really enjoy watching.

Gene Simmons Family Jewels

I was never a fan of Kiss but I love this show. It's fun and actually not at all what I would have ever expected. Check it out sometime. Nothing like seeing an old man, trying to squeeze and old man body into an outfit with fanny cut outs. YIKES!!! Ok, so that part is scary (actually it's funny) but he, ok, his kids and wife, are the first to make fun of him and he takes it all in stride. Not at all the demom he always made himself out to be.

Saturday, March 24, 2007


ok... so ignore my post about illness. We are very lucky. One of C's friends, a little girl who also is blessed with an extra chromosome, is in the hospital. L has pneumonia. I went to visit her and her mom today. They will be in the hospital a few more days. L's mom is very familiar with the hospital since L was one of the children with ds who was born with a heart defect. To see her in a hospital room was so sad. I feel so bad for her mom. It's hard when you know they are sick but you are tired of people poking your baby and making them so sad... you just want to grab them and go home and crawl in bed together and hide. Here is hoping that L is home with mom very soon.

Friday, March 23, 2007

C's song

This has always been a song that I loved. When C was born, it took on a whole new meaning. Someone posted the video link today and it made me love it even more. To see such a diversity of women and girls (including of course one with Down syndrome) is so powerful. My favorite line (if I can really choose one) would have to be "With love, with patience and with faith, She'll make her way" I will give her that love, patience and faith and I have no doubt that C will make her way and she will leave quite an amazing wake in her path.


Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

Thursday, March 22, 2007

Ahhhhhh... gotta love school pictures

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I admit it... I am a photography snob! I went into the "school" pictures with low expectations and seriously expecting to get back a really funny picture. Well, I know she is mine, but I think 'lil bugs picture turned out so stinking cute. No, she would not smile, but at least she sat still which is no small task.

I have every one of my charming school pictures. The one with Cindy Brady's hair style. The one with my pin curls that I just HAD to have. The one (make that one's) where you would swear I was a girl if not for the dress with flowers that I was FORCED to wear. The one my mom had made! ARGHH!!! Every kids (yes, even a second graders) worst nightmare. I have them all and I will spend the money to be sure Claire has them all too. Why should she miss the fun I have looking back at the changes through the years.

Enjoy my girl and don't worry... the 3 year pictures at the professional photographer are scheduled to the good stuff will be here in August. In the meantime, check out how stinkin' cute she is.

Tuesday, March 20, 2007

Germs, germs and more germs!!!

Go away please. I have had it with germs. C was a healthy little one until she turned 2. Did the terrible two's bring illness... no, it brought DAYCARE!!!

We love our daycare. C loves it and they love her. She gets so excited when I tell her that we are going to see her friends at school. Of course, some of these friends include rotovirus, croup, colds, etc. Those nasty little bugs that creep right in.

Since she was 2 we have seriously spent an amazing nomber of visits at the pediatrician. Of course, every trip to the pediatrician means another opportunity to meet more friends like strep, pink eye and croup. (that tramp hangs out everywhere)

Ahh... we are healthy. What? A birthday party? GREAT!!! We are healthy. We head off to Jungle Java (aka Germey Java) and have fun with all the kids and again... yep, that tramp croup!

They are unavoidable we have learned. We just give in, ask them to make their visit to our home a short one and to be gone and not return. It seems to be working but not before we have our own home version of a VERY well stocked pharmacy.

Please, please summer. Come soon. We are begging you!

Sunday, March 18, 2007

The most hateful yet accepted word...

This is a very powerful high school speech by an amazing young man named Soeren Palumbo

I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gawd! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, "Hey, Negro! You missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls, hell, all white people - have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.

So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch em in the face. Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves Pinch yourself for each time you have called someone else a "retard".

If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?). The girl didn't say "hey Negro." There was no black person. It was a mentally handicapped boy washing the windows. It was "Hey retard." I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language.

I don't understand why we use the word; I don't think I ever will. In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping- I hope that offends you students, it was meant to - but I don't think the adults, here can either. Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger - hell the word Negro - used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have.

That's what I thought.

Clearly, this obviously isn't a problem contained within our age group. So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even - no, not even, especially - the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago. She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that anymore. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking. She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school. And I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The retard rocket.

No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult"'s joke. By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate. It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard", before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is "retarded".Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore. The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.

Soeren Palumbo

I have always been sensitive to this word. Yes it is a word and it does have a meaning. That meaning is slowed or delayed. The word Retarded is rarely every used that way. Instead it is used as a replacement for stupid. My daughter is medically considered Retarded. You have not met her but trust me, she is far from stupid.

I have friends who still use this word. I have explained how this hurts me and yet, it still happens. It happens when we are out to dinner, at work... it happens when it never should. It happens and the person who used the word may as well stop talking. I don't hear a word you say after that, I focus on the word and on you for using it. I wonder why you are not phased when you know we have discussed it. I wonder what about you makes me want to stay a friend when, to me, you are calling my child stupid.

TV uses it all the time. Now there are even frequent references to people being stupid because they have an extra chromosome (as does C) or even going as far to say it's because they have Down syndrome. The audience laughs and I want to scream.

I know it's personal to me but it should be personal to all of us. In a split second, something could happen and God forbid it could be your husband, your wife, your parent or your child who is now medically considered "retarded". It could be your loved one who is being called stupid when someone uses the word in a now accepted manner... just because they don't meet the standard of what is considered normal and are a bit delayed. How would you feel then?

And so it begins...

So, since I had plenty of spare time, since I do have a habit of staying up on the computer until insane hours, I figured I would enter the world of blogging.

I am new at this one so give me time.

I hope to use this as a place to educate, vent and just share.