...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Monday, May 24, 2010

Leukemia Drive Speech

My Miss Peach was thrilled to her toes that her 5th grade teacher said she could do a motivational speech for her class to help boost efforts for the leukemia drive! And while I was researching statistics for childhood leukemia, information I hope to never need again, I was reminded of all the nasty and frightening medical crap out there that I read after getting our Ds diagnosis, that tells us nothing about the wonderful, loving, charming and worthy little beings we are carrying just under our hearts. But I did find this one little nugget:

•Behavior: Natural spontaneity, genuine warmth, cheerful, gentleness, patience, and tolerance are characteristics.

The Girlie rocked her speech! My shy and timid little flower is blooming, and her brilliance is intoxicating! She spoke clearly and pronounced big words like lymphocytic and myelogenous without a hitch! Here is part of her speech:

Leukemia is a cancer of the blood and bone marrow. It means that there are too many blood cells. The blood cells are immature and unable to do what blood cells are supposed to do. They are useless.

There are four major kinds of leukemia
acute lymphocytic leukemia
chronic lymphocytic leukemia
acute myelogenous leukemia and
chronic myelogenous leukemia.

Chronic leukemia means the person gets sick slowly. Acute leukemia means the person gets really sick, really fast. The most common kind of leukemia in children is acute lymphocytic leukemia and about 5,760 children will be diagnosed with it this year.

Anyone can get leukemia. Slightly more boys will get it than girls. The statistics by race are very confusing because first it says that white people are more likely to get it. Then it says that African American people are more likely to get and then it says Hispanic people are more likely to get it. The best my Mom was able to determine is that it strikes all races.

In 1960, of all people with leukemia, only about 14 % got better. In 2005, that number has increased to over 50%! In some kinds of leukemia, the childhood survival rate is over 90%. The money that you are all collecting helps fund research to make these grown ups and children get better. That's why it's so important!

My Mom brought my little brother here today because he has Down syndrome. Babies and children with Down syndrome are 15–20% more likely to get leukemia before they turn 3 years old. This means that one out of every 95 babies with Down syndrome will get leukemia. Only 1 in 2000 babies without Down syndrome will get leukemia.

Down syndrome means that Jack has 3 copies of the 21st chromosome. You and I and Mrs G*** have only two copies. Scientists are finding out that the genetic material on the 21st chromosome is at least partly responsible for how the bone marrow in our bodies makes our blood cells. It is currently being said that studying babies with Down syndrome will ultimately help scientists find answers about how to help all children and grown ups with leukemia.

Without us collecting money to donate, a smaller percent of people will get better. So lets all keep doing our best and see how much money we can raise to help find a cure!

Once she was finished speaking, her awesome teacher invited the students to ask questions. I was so impressed with these wonderful children and their thoughtful questions! And it didn't hurt that they all were about Jack, who sat happily on my lap smiling at everyone! The first question was of course, how do you get Down syndrome? I gave them the quick answer that science doesn't really know yet, but it happens when three copies of the 21st chromosome are made instead of just two. These kids are wiser than I was at 11 years old. The second question was is there a test to find out if the baby has Down syndrome before it's born? Yes there is! The doctor can do a special test to find out if the unborn baby will have Down syndrome. When did you find out? About four months before he was born. Is it dangerous for the baby to have Down syndrome? I said that only about 25% of babies with Down syndrome will live until they are born. This clearly sparked alarm because one little boy blurted out with scared look Well, what about after the baby is born, is it okay then? I spoke of a few of the health problems children with Down syndrome can have, but that happily, Jack is well and healthy! I also was quick to say that most of the babies who have many of the health problems can either have surgery to correct the problem, or take medicine to treat it. One little boy said, "I don't really have a question. It's more like a comment. Jack is such a cute little baby and I'm afraid that when he comes to school some kids could be mean to him or pick on him." So....think fast, Mom! I leaned into this thoughtful boy and asked, "Have you ever been picked on?" Of course he said yes. So I asked the class at large, "Anyone else? Have you ever been picked on? How about you? You? You? Yep. Me too. It happens to every one and it will happen to Jack, too. All we can really do about that is to prepare him for what to do when it happens." Another little guy asked if there were things about Down syndrome that you can see. I asked them all to look at their hands and tell me how many lines they had on each palm. There was much scraping of chairs when I invited them to come see Jack's palms. The first little girl to see Jack's hands said "Hey! He only has one line!" We talked about some of the other characteristics of Ds. Smaller ears, upward tilted eyes, a flatter bridge to the nose. They were really intrigued that while Jack has all three bones in both pinkie fingers, his right pinkie appears to have only one flexion crease. It was particularly interesting to them to know that people with Ds may have the single Simian line in only one palm, or neither! While it turned out to be a decidedly Down syndrome Q&A, the last little boy asked, "Does that mean that Jack has a 15-20% bigger chance of getting leukemia?" Yes it does, but with everyone helping to raise money for leukemia research, maybe they will find a permanent cure some time very soon! Then he said, "Well. I hope he's not the 1 in 95," looking sad. Me too, I say. Then I looked back at this boy, this very, very thin boy. This very, very, very pale little boy. With big brown inquisitive eyes and decidedly unruly curly brown hair. I wonder what he's seen in life.

My Girl was so, so very pleased that she'd stood up and addressed her class "without messing up once! And guess what else? Mrs. G*** gave me extra science points!" She stood next to Jack and I with such a proud and happy smile. She said later that the best part was, "When Jack got to come and meet my class. They all got to see him!" She also enjoyed calling on which kids with their hands waving in the air got to ask their question! She ROCKS!

It was interesting for me to see from the vantage point of being surrounded in a semi-circle of kids, that while all the kids were looking at Jack, most of the boys looked at me while I answered questions. The girls nodded their heads, but nearly all of them continued to look at Jack while I spoke. Hands down the boys asked more questions, but by the middle of our presentation, nearly every girl had leaned forward toward Jack. Chromosomes. X and Y. They certainly have their own roles!

It must be my week to teach. Between the hospital nursing students, and even some of the licensed RN's, and The Girlie's fun classroom experience, I have spewed Ds facts I didn't know I knew! Next up was The Pod Pie's IEP just 15 minutes after My Girl's wonderful presentation. I was holding Will in my arms over my shoulder and had asked The Pod's SLP if she had a network base I could draw from. I said that we were having trouble finding an SLP in this area for "this one" and patted Will's hiney. She was surprised that he'd need one and said, "Already? Why?" I said, "Oh, he has Down syndrome," and I turned him around so she could see his sweet face. And her one and only comment was, "Oh those babies are always so happy!" with the gushy look on her face. And I spoke right up and said, "Oh, I beg to differ! He is a happy, good natured little baby, but he cries just like any one else if he's hungry or tired or has a tummy ache!" I told her about a blog post where I'd addressed this very misconception about kids with Ds being perpetually happy, complete with a picture of a red-faced Willie, screaming his lungs out! There were laughs all around and she ended with saying, "Oh. I didn't realize that." What 'that' was I don't know, so I followed up with, "He's pretty much just like any other baby, but he wears his chromosomes on the outside where people can see them."

1 comment:

To Love Endlessly said...

AWESOME!! It was really interesting to see what the questions were from the kiddos. Very interesting. I bet your girl was so proud of herself and about those extra points. :-)