We have been felled.
E woke up last Saturday night vomiting after sleeping for a few hours. It's always fun to walk into a room smelling of barf watching your baby/toddler trying to figure out what's happened while simultaneously trying to get them clean and safe while keeping yourself relatively puke free and stripping soiled beds. Thanks heavens for Big Daddy. The throwing up portion of the evening lasted a few hours then subsided. I slept in her room and luckily, there was no high fever. After a couple days of not eating too well, she seems to have bounced back into her normal self.
I came down with the major pukes, though on Wednesday (12/23) night. This lasted through the next morning when major fevers started. Hello 103.5! Luckily, the high ones broke on Christmas Eve, but a low grade one lasted until yesterday (12/27). Unfortunately, ongoing nausea seems to be sticking around, but that's about it. This meant, though, no family activities on Christmas Eve or Christmas Day. Vomit is not a well appreciated gift.
M has been punky all week and actually woke up on Christmas Eve (technically Day as it was 1:30am ish) night and threw up on our bedroom and bathroom floor. After, we had her sleep in our bed while Big Daddy slept in hers. She was super chatty and excited still for Santa. Despite numerous threats that she needed to sleep, I think the most we both got was a solid two hours or so. The rest of the night was spent arguing about needing to go to sleep.
Christmas finally commenced (a real live American Girl!) with calls and Skyping to family who were carrying on without us. M, though, has been running a little low grade temp and been a little erratic in behavior and eating since. Thinking we were on the mend, plans were made to celebrate with local family today (Sunday, 12/27).
Nope. M still had a little temp and we didn't want to risk it with her 94 year old great grandma. Bitter calls made to once again cancel and disappointed girls (who said they were fine) moped around watching videos. There was perking up later in the day with the painting of the triple bunk bed made the day before by Big Daddy. The celebratory ice cream that was enjoyed, however, made a reappearance a couple hours later.
So, here I sit, tucked into a nest of pillows of blankets on M's bed while she is finally asleep. She tried water a little too soon (I tried to tell her that it would end badly. Unfortunately, this is my trait in her that things must be experienced to be believed.), so two more episodes later, she's finally out and we'll hope this is the last of it.
ETA: She woke up shortly after posting and threw up a little. Big Daddy held the bucket and I held hair. At the end of the episode, she asked for a washcloth for her face. I held the bucket while Big Daddy went to get one. I told her to wait a minute and she said, "I'm trying to stay calm."
ETA: Also, I should note that she was a great trooper, making the bucket for about 98% of episodes (the first one caught her a little, but not totally, unaware. Seriously, she was great. After posting, though, she was too hot she said, so after the "I'm trying to stay calm," incident, she got in the tub. Then, after returning to her bed, we had cool cloths on her head. She firmly rejected any ice chips, but liked a cool cloth. Ibuprofen was successful around 11:00 and sips of water commenced around 3:00 a.m. chasing a second dose of motrin. Popsicles and water have been the order of today, so we'll hope for a measured recovery that will allow for the twice-postponed Christmas to be successfully rescheduled.
Sunday, December 27, 2009
Saturday, November 21, 2009
Riding on Mommy (Edited)
M, January 2005 (20 months) 
E, November 2009 (22 months)
ETA: M, October 2004 (17 months)
This was the pictures I was originally thinking of. Big Daddy emailed it to me after putting it with the Little Peeps (above) picture.
E, November 2009 (22 months)
ETA: M, October 2004 (17 months)
This was the pictures I was originally thinking of. Big Daddy emailed it to me after putting it with the Little Peeps (above) picture.
Tuesday, November 3, 2009
Saturday, October 31, 2009
The End
It's the end of 31 for 21. Thanks to Tricia for making it happen.
Here are things I learned/accomplished:
Here are things I learned/accomplished:
- Although I didn't post everyday (doubling up these last few days), I have posted 31 times this month! Yay me!
- I was thinking, though, of all the things still left unsaid for Down Syndrome Awareness Month and other stuff that just lurking around in my head to write about and feeling a bit panicked because I didn't get it done this month. Then I realized that I can keep posting more frequently going forward (duh!) Which is what I'll try to do because there's lots more to be said about our lives, and heaven knows that M will have many things to discuss (did I tell you we're already on Christmas lists?) and opinions to share, and there will be pictures of my girls.
- I visited every blog on the 31 for 21 list. I bookmarked quite a few.
- I commented on entries that I liked. This is big as normally I'm a lurker, loving what I read, but not telling the writer. I tried to make a point to do that this month for these bloggers who were sharing their stories.
- I've really appreciated those who have commented here. Thanks!
Official 2009 Halloween Report
Pumpkins
This was the first year we carved pumpkins.
M gave me the inspiration for how each should look (click on image to enlarge):
Note the following:
- When asked what E will be for Halloween, we said sleeping (I don't mess up sleep schedules for kids who aren't allowed to eat candy, tell me what they want to be, or walk. Maybe next year), so she drew E's pumpkin with Zzzzzzzs.
- The stencils are from the little book that Nana sent.
- Yes, there are pumpkin guts on the page.
- I did make the freckles with an awl, but they didn't show up when lit.
Then, while Big Daddy wrangled The Girls, I carved very carefully:
(l-r: Mom, Dad, E, M)
We included the one (far left) that M got to bring home from school.
Then tested for proper glowing:
Then placed them on the porch.
Trick or Treating
Costume on (notice the layers underneath, it was cold!) and treat bag ready, M and Big Daddy set off.
Costume on (notice the layers underneath, it was cold!) and treat bag ready, M and Big Daddy set off.
Usually, they (M & Big Daddy) do the gathering while I distribute. This year, M asked if we could each do half, so they returned after 1/2 the street and M & I set off after donning my costume (sorry, no pictures were taken). My costume was a little tiara, feather boa, wings (which didn't fit), and a wand so I could be a moonlight fairy. I was lovely if I do say so myself (and because no pictures exists, you'll have to believe me!).
We did our street, plus the neighboring one where there was way more action. Our street, in comparison, was dead. We think because we don't have great lighting at the ends and the houses on the end weren't participating tonight that it may have seemed too dark. Also, because our street dead-ends into another one (versus letting out onto two major streets), I think this deters people from knowing how to manage working the entire neighborhood.
M was really funny and had a ton of comments on her costume. Of course, we thought hers was the best, but I think it's refreshing to see sweet and charming rather than some costumes proposed for little girls.
Anyway, we had a great time. M was exhausted when she got home and despite efforts to keep her up a little later than normal (grrr time change), she was in bed a little after 8:00, worn out, I think, from all the excitement and the chocolate!
Now...only 54 days to Christmas!
Friday, October 30, 2009
Recent Conversations
Yesterday (10/29/09) Morning, on our way out the door to go to school:
...somehow getting onto planets....
M: Mom, what is the further planet from Earth?
Me: Well, Pluto used to be, but now I think it's Neptune. I can't really remember the order of the planets and I don't remember the trick to do it.
M: What trick?
Me: It's called a mnemonic device and it's a way to remember the order of something. Like knowing that the word HOMES will give you the five Great Lakes of Michigan. Huron, Ontario, Michigan, Erie, Superior.
M: Ontario, I know Ontario. Why is it called that when it's in Michigan?
Me: Because it's an Indian word that's used a lot around these areas for the Indians that used to live here.
M: The white people weren't very nice to the Indians.
Me: No, they weren't.
M: I bet the Indians were sad when the white people came.
Me: Yep, I bet they were.
M: It's like white people were British.
*****************************************
this morning (10/30/09) on the way to school
background information - I bought an umbrella for M that automatically opens and closes because she has one that's too big (parasol shaped) for her backpack and the small one that I have is a manual and she has a little trouble with it. We practiced opening and closing it to be sure she could work it with the understanding that she could take it to school.
M: My new umbrella is in my backpack.
Me: Yep.
M: It has a button that opens and closes it.
Me: Mmmmhmmm.
M: It's electric.
Me: No honey, it's automatic.
****************************************
tonight, in the car (10/30/09)
M: Did you know you have a telescope in your mouth?
Me: What do you mean?
M: There's a telescope in your mouth.
Me: [no clue] That you can look at things with?
M: No, that the tooth fairy uses to see in your mouth.
Me: Hmmm...I didn't know.
...somehow getting onto planets....
M: Mom, what is the further planet from Earth?
Me: Well, Pluto used to be, but now I think it's Neptune. I can't really remember the order of the planets and I don't remember the trick to do it.
M: What trick?
Me: It's called a mnemonic device and it's a way to remember the order of something. Like knowing that the word HOMES will give you the five Great Lakes of Michigan. Huron, Ontario, Michigan, Erie, Superior.
M: Ontario, I know Ontario. Why is it called that when it's in Michigan?
Me: Because it's an Indian word that's used a lot around these areas for the Indians that used to live here.
M: The white people weren't very nice to the Indians.
Me: No, they weren't.
M: I bet the Indians were sad when the white people came.
Me: Yep, I bet they were.
M: It's like white people were British.
*****************************************
this morning (10/30/09) on the way to school
background information - I bought an umbrella for M that automatically opens and closes because she has one that's too big (parasol shaped) for her backpack and the small one that I have is a manual and she has a little trouble with it. We practiced opening and closing it to be sure she could work it with the understanding that she could take it to school.
M: My new umbrella is in my backpack.
Me: Yep.
M: It has a button that opens and closes it.
Me: Mmmmhmmm.
M: It's electric.
Me: No honey, it's automatic.
****************************************
tonight, in the car (10/30/09)
M: Did you know you have a telescope in your mouth?
Me: What do you mean?
M: There's a telescope in your mouth.
Me: [no clue] That you can look at things with?
M: No, that the tooth fairy uses to see in your mouth.
Me: Hmmm...I didn't know.
Halloween Fun
First,
Was finding the right outfit to wear.....
And to have the hair done properly....
Next,
Supporting players (e.g., sisters) must get into the color scheme of the day....
Then,
To change into costume,
Finally,
To come home and smile pretty.
Was finding the right outfit to wear.....
And to have the hair done properly....
Next,
Supporting players (e.g., sisters) must get into the color scheme of the day....
Then,
To change into costume,
And have a Parade
Finally,
To come home and smile pretty.
The End
Thursday, October 29, 2009
H1N1, A Little History of Flu, Links
[Disclaimers: I'm not a medical professional. For this post, I'm working from memory on books and other rearch for my thesis and the project I worked on this summer. Your best bet is to talk to your medical professional and research reliable sources.]
The H1N1 is a scary thing. Influenza, to me, is more scary than many other infectious diseases because it occurs in many species (humans, pigs, fowls, etc.) and the continual combining of DNA from these species leads to new influenza types.
H1N1 is an Influenza A virus that's new to health and public health officials. Regular seasonal flu is also a type A virus (I think), but with different DNA components. Because it's a new variant, illness is distributed across the entire population with mortality occurring in all groups, but especially in those not normally seriously affected by seasonal flu. [note: this is a general statement and better, and more qualified researchers have written much about influenza.]
There are two issues regarding pandemic flu. One is to realize that pandemic only means that it's widespread. It related to the distribution, NOT severity or mortality. The other is that for severity (mortality), the Centers for Disease Control and Prevention has a Pandemic Severity Index that is similar to a hurricane scale, e.g., as it becomes more dangerous/life threatening, the rating increases.
So, one can declare a pandemic (widespread illness in the population), but with low mortality (similar to now, but it could change). Conversely, a pandemic with high mortality is something like the 1918 outbreak.
Regardless of the situation, though, there are great, easy ways to prevent flu.
#1 - Handwashing
Yep. Handwashing. NPR's Talk of the Nation recently did a short bit on Finding the Right Hand Scrubbing Message (audio or transcript).
#2 - Covering Your Cough/Sneeze
Coupled with handwashing, covering coughs and sneezes is a great way to stop spreading germs. Take 5 minutes and watch Why Don't We Do It In Our Sleeves?
There are many more things you can do to protect yourself. Check out the following:
Let's say your county has 10,000 people.
The infection rate is 50% - 5,000 sick people.
The hospital admission rate is around 4% - that's 200 people admitted to a hospital
Walking-Well/Worried-Well is 10X - that's 2,000 people who need care; who will divert critical resources, who will use limited resources.
So, to sum up our lesson today:
1. Flu sucks.
2. Wash your hands, cover your coughs/sneezes.
(Rating others silently is also fun)
3. Talk to you medical professional about vaccination.
4. Think about the medical resources you really need. See if your physician, pediatrician, public health department has someone you can talk to.
The H1N1 is a scary thing. Influenza, to me, is more scary than many other infectious diseases because it occurs in many species (humans, pigs, fowls, etc.) and the continual combining of DNA from these species leads to new influenza types.
H1N1 is an Influenza A virus that's new to health and public health officials. Regular seasonal flu is also a type A virus (I think), but with different DNA components. Because it's a new variant, illness is distributed across the entire population with mortality occurring in all groups, but especially in those not normally seriously affected by seasonal flu. [note: this is a general statement and better, and more qualified researchers have written much about influenza.]
There are two issues regarding pandemic flu. One is to realize that pandemic only means that it's widespread. It related to the distribution, NOT severity or mortality. The other is that for severity (mortality), the Centers for Disease Control and Prevention has a Pandemic Severity Index that is similar to a hurricane scale, e.g., as it becomes more dangerous/life threatening, the rating increases.
So, one can declare a pandemic (widespread illness in the population), but with low mortality (similar to now, but it could change). Conversely, a pandemic with high mortality is something like the 1918 outbreak.
Regardless of the situation, though, there are great, easy ways to prevent flu.
#1 - Handwashing
Yep. Handwashing. NPR's Talk of the Nation recently did a short bit on Finding the Right Hand Scrubbing Message (audio or transcript).
#2 - Covering Your Cough/Sneeze
Coupled with handwashing, covering coughs and sneezes is a great way to stop spreading germs. Take 5 minutes and watch Why Don't We Do It In Our Sleeves?
There are many more things you can do to protect yourself. Check out the following:
- Pandemic Flu (CDC site) - http://pandemicflu.gov/
- Seasonal Flu (CDC site) - http://www.cdc.gov/flu/index.htm
- H1N1 Flu (CDC site) - http://www.cdc.gov/h1n1flu/
- Ready (US Government) - http://www.ready.gov/
- NW Ohio Pandemic Flu - http://nwopandemicflu.org/default.aspx (for those of you in NW Ohio and/or are interested in the project I worked on this summer)
- You should make the decision with your medical professional. Read first, though and know what groups are at risk and whether you and your loved ones fall into a high-risk group. The H1N1 has different risk groups than regular seasonal flu, so know the difference.
- Realize that if you've been getting flu shots all along, that the H1N1 is another version of it. It isn't an entirely new vaccine, say the difference between one for chicken pox and one for tetanus, but similar to the difference between the seasonal flu shot this year vs. the one last year. Public Health officials happen to know this year of two types of flu that are about and were able to produce vaccine for both types.
- Vaccines are intended to either prevent getting a disease or to reduce it's severity. You may receive the vaccine and still get seasonal or H1N1 flu, just not as bad.
Let's say your county has 10,000 people.
The infection rate is 50% - 5,000 sick people.
The hospital admission rate is around 4% - that's 200 people admitted to a hospital
Walking-Well/Worried-Well is 10X - that's 2,000 people who need care; who will divert critical resources, who will use limited resources.
So, to sum up our lesson today:
1. Flu sucks.
2. Wash your hands, cover your coughs/sneezes.
(Rating others silently is also fun)
3. Talk to you medical professional about vaccination.
4. Think about the medical resources you really need. See if your physician, pediatrician, public health department has someone you can talk to.
Getting to the End of 31 for 21
Clearly, I'm not blogging everyday. In fact, I just checked and I have only posted 40 times this year with 22 of them (not including this post) in October!
I missed this weekend partly because I wasn't feeling so chatty and because we entertained friends on Saturday. It was a really lovely day (Hi B family! Can't wait to see you again soon!). Dinner was Mac & Cheese (really, really good) with salad, broccoli and great friends.
Sunday was spent getting ready for Big Daddy's Grandma's (the Triple G to M & E) birthday party. Halfway there, though M said she didn't feel good and wanted to go home. Considering her girl cousins who she loves were going to be there, plus the fun of doting grandparents and aunts & uncles, this was a pretty big deal. We went home, missing the party, and M was off...stomach and head aches, but no fever.
She went to school Monday for a bit, but the school nurse called because she wasn't feeling well. Again with the stomach and head aches but no fever. I kept her home yesterday just in case and because she still seemed a little punky to me.
She went to school today (Tuesday as I write this, thank heavens for predating in Blogger) and did fine, although we skipped Dance so that she wouldn't be too worn out.
So anyway....I'm planning to get 31 posts in this month, so scroll down for multiple posts each day. And, perhaps, continue to work on posting a little more frequently as it's a great way to remember these days that seem to speed by too fast.
I missed this weekend partly because I wasn't feeling so chatty and because we entertained friends on Saturday. It was a really lovely day (Hi B family! Can't wait to see you again soon!). Dinner was Mac & Cheese (really, really good) with salad, broccoli and great friends.
Sunday was spent getting ready for Big Daddy's Grandma's (the Triple G to M & E) birthday party. Halfway there, though M said she didn't feel good and wanted to go home. Considering her girl cousins who she loves were going to be there, plus the fun of doting grandparents and aunts & uncles, this was a pretty big deal. We went home, missing the party, and M was off...stomach and head aches, but no fever.
She went to school Monday for a bit, but the school nurse called because she wasn't feeling well. Again with the stomach and head aches but no fever. I kept her home yesterday just in case and because she still seemed a little punky to me.
She went to school today (Tuesday as I write this, thank heavens for predating in Blogger) and did fine, although we skipped Dance so that she wouldn't be too worn out.
So anyway....I'm planning to get 31 posts in this month, so scroll down for multiple posts each day. And, perhaps, continue to work on posting a little more frequently as it's a great way to remember these days that seem to speed by too fast.
Wednesday, October 28, 2009
Feet
So, one of the characteristics of Down Syndrome is the low muscle tone (hypotonia). E. needs work in every area to keep her muscle stimulated to work like those in genetically unenhanced (e.g., "normal" kids) do.
This summer, our PT thought it would be a good thing for us to try orthotics, and recommended Sure Steps. We picked the daisy flowers because we like to call E. our petite little flower.
When we met with the guy (orthoist? I'm not sure what he's called other than Dan) at Cole Orthotic Pediatric Center, he asked if we were looking at orthotics because E. pronated (a typical issue for kids with low tone). I said yes, that it was a concern, but that I thought the greater issue was her ability to hyperflex her ankles. This flexiblity has been noted by many, including her pediatrician at her first well check (at 2 weeks old). Dr. M said that it was likely her feet were folded all the way back to her shins in utero.
Did I mention that E has teeny, tiny little feet? She wears a size 4 shoe only because it needs to fit the orthotics. Here's her orthotic with a 8 bump (e.g. 2x4) Lego piece shown for scale.
Thursday, October 22, 2009
On Compassion
From The Onion (satirical newspaper)
If God Had Wanted Me To Be Accepting Of Gays, He Would Have Given Me The Warmth And Compassion To Do So
"At the end of the day, I'm just trying to lead a good Christian life. That means going to church on Sunday, following the Ten Commandments, and fighting what I believe to be a sexual abomination through a series of petty actions and bitter comments made under my breath. Sure, I sometimes wish God would just reach into my heart and give me the ability to treat all people with, at the very least, the decency and respect they deserve as human beings. But unfortunately for that new couple who moved in three houses down, He hasn't yet."
If God Had Wanted Me To Be Accepting Of Gays, He Would Have Given Me The Warmth And Compassion To Do So
"At the end of the day, I'm just trying to lead a good Christian life. That means going to church on Sunday, following the Ten Commandments, and fighting what I believe to be a sexual abomination through a series of petty actions and bitter comments made under my breath. Sure, I sometimes wish God would just reach into my heart and give me the ability to treat all people with, at the very least, the decency and respect they deserve as human beings. But unfortunately for that new couple who moved in three houses down, He hasn't yet."
What I Know Now
Part of the fun with 31 for 21 is that I'm finding new blogs. Some I can relate to and others not (hmm...sounds a lot like non-DS blogs too!). This is from one called Nuts and Boltz(10/15/09). I've only adapted it to make it for our family.
If I knew then what I know now.
If I knew then what I know now...
If I knew then what I know now.
If I knew then what I know now...
...I would not have worried about what the diagnosis would do to my marriage. It only made it stronger.
...I would not have worried about what it would do to my older child. It only made her better.
...I would not have worried about what other people think. It has enabled me to see who really matters.
...I would not have worried how E would be treated, because love surrounds him, both in what she attracts and what she gives back.
...I would not have worried about what my future would look like, because it looks just fine with her right beside me.
...I would not have worried about what her future looks like. The future is bright because of resources available to her, and because of the people who love her.
...I would not have worried about whether or not she would be happy, because she is joyful.
...I would not have worried about my shortcomings and how they'd be tested. Family and friends (old and new) and resources are as much available to me as they are to her. [added by me].
...I would not have worried about my shortcomings and how they'd be tested. Family and friends (old and new) and resources are as much available to me as they are to her. [added by me].
She Cried
Today.
When I dropped her off at daycare.
This is the first time that E cried when I left her.
I've been waiting for this day and dreading it too. I think it's a big deal that she realized I was leaving.
There's a new caregiver in the room so that may have been part of it. I like that she'll miss me this one day we're apart. I know I miss her and her sister on these Thursdays that are mine. It's funny how much I anticipate my Thursdays "off," that when the day comes, I'm ready/not ready to be without them.
Anyway, she cried. But then was fine with a little cuddle from her familiar teachers. [Mama knows because I waited outside the door].
When I dropped her off at daycare.
This is the first time that E cried when I left her.
I've been waiting for this day and dreading it too. I think it's a big deal that she realized I was leaving.
There's a new caregiver in the room so that may have been part of it. I like that she'll miss me this one day we're apart. I know I miss her and her sister on these Thursdays that are mine. It's funny how much I anticipate my Thursdays "off," that when the day comes, I'm ready/not ready to be without them.
Anyway, she cried. But then was fine with a little cuddle from her familiar teachers. [Mama knows because I waited outside the door].
Wednesday, October 21, 2009
Fourteen
It's our 14th anniversary today, so I thought I'd take a moment to talk about He who is called Big Daddy on the blog. So, here are fourteen things I love about him:
Happy Anniversary.
YFB
- He's my hero. Both in a fairybook, swoony sort of way, but also as a being a strong, resilient, taking on what comes his way sort of way.
- He's funny.
- He's smart.
- He's an amazing father.
- He's cool.
- He's a musician.
- He's creative.
- He's able to fix things.
- When I took him home to meet my family for the first time, my sister K said that I was more me with him. And it's true. I am me with him.
- He's a good cook.
- He does more than his share of housework and changing of dirty diapers.
- He's not the person he was when we married. He's better and continues to be so as time goes on.
- We balance each others' strengths and weaknesses.
- He likes to read.
Happy Anniversary.
YFB
Monday, October 19, 2009
Heresy
When people learn that E has Down Syndrome, invariably there's a comment about how loving children with Down Syndrome are, how easy going they are, how they're closer to God, etc. All things to convey that somehow, having Down Syndrome makes a child more precious and special.
I have a confession about this view.
I think it's crap.
Don't get me wrong. My girls are the sun, moon, and stars to me. Both of them are beyond precious to me, but E's Down Syndrome doesn't make her more so. I don't think she's closer to God than any other child is or adult chooses to be. And I think that placing those expectations or that view on her disrespects and limits her. It doesn't see her.
As a caveat, I'm only 21.5 months into being a parent of a child with DS, so it's possible that this view may change. But at this moment, I only see how restrictive the view is for her and how inaccurate it is already. At 21.5 months, E is smart, willful, stubborn, and persistent. She is also loving, sweet, and darling. She is, like all humans, a complex being.
When M was born, the phrase used was, "I don't know, she's still a mystery to me." We still us it today and it's totally applicable to E, perhaps even moreso because what we know about parenting M is not necessarily useful knowledge for E. They are different from one another as all sibilings are.
I think about E's DS as more of a condition that she lives with rather than it being a way of life. For example, when you think of someone with diabetes, you don't see the diabetes as the defining issue in their life. The person is living with diabetes rather than giving them a label of Diabetic with a big D. See the nuance of it? And how different one can be from the other?
This is why I think that this attitude about people with Down Syndrome is crap. It doesn't provide a full view of the richness and complexity that all people share. I think it also diminishes the role of the parent and sibilings. Parenting children isn't always sunshine and roses and my E isn't more likely to poop kittnes and rainbows than M ever was. So don't be surprised when you tell me how easy it is or how loving DS kids are that my comment is that I'll be happy to call you around 5:00 am when E is making her desire to get up known; or when she's tired of riding in the car seat, or teething, or giggling like mad because M is making her laugh.
When we don't acknowledge this complexity about people with Down Syndrome, then we don't see them. The National Down Syndrome Congress has a campaign called More Alike than Different. Check it out and see for yourself. Consider, what if they were only "allowed" to stay loving and all the other outdated assumptions. I think it's obvious which future I want for my E.
I have a confession about this view.
I think it's crap.
Don't get me wrong. My girls are the sun, moon, and stars to me. Both of them are beyond precious to me, but E's Down Syndrome doesn't make her more so. I don't think she's closer to God than any other child is or adult chooses to be. And I think that placing those expectations or that view on her disrespects and limits her. It doesn't see her.
As a caveat, I'm only 21.5 months into being a parent of a child with DS, so it's possible that this view may change. But at this moment, I only see how restrictive the view is for her and how inaccurate it is already. At 21.5 months, E is smart, willful, stubborn, and persistent. She is also loving, sweet, and darling. She is, like all humans, a complex being.
When M was born, the phrase used was, "I don't know, she's still a mystery to me." We still us it today and it's totally applicable to E, perhaps even moreso because what we know about parenting M is not necessarily useful knowledge for E. They are different from one another as all sibilings are.
I think about E's DS as more of a condition that she lives with rather than it being a way of life. For example, when you think of someone with diabetes, you don't see the diabetes as the defining issue in their life. The person is living with diabetes rather than giving them a label of Diabetic with a big D. See the nuance of it? And how different one can be from the other?
This is why I think that this attitude about people with Down Syndrome is crap. It doesn't provide a full view of the richness and complexity that all people share. I think it also diminishes the role of the parent and sibilings. Parenting children isn't always sunshine and roses and my E isn't more likely to poop kittnes and rainbows than M ever was. So don't be surprised when you tell me how easy it is or how loving DS kids are that my comment is that I'll be happy to call you around 5:00 am when E is making her desire to get up known; or when she's tired of riding in the car seat, or teething, or giggling like mad because M is making her laugh.
When we don't acknowledge this complexity about people with Down Syndrome, then we don't see them. The National Down Syndrome Congress has a campaign called More Alike than Different. Check it out and see for yourself. Consider, what if they were only "allowed" to stay loving and all the other outdated assumptions. I think it's obvious which future I want for my E.
Friday, October 16, 2009
Fierce
(sorry for the larger images, but I wanted to be sure that they were legible to readers)
M has taken a real leap forward in the last couple weeks with her writing. She started a First Grade Journal at home (not something required for school) and was writing about her day the other night. Today, she bought a diary for recording other notes and such.
What I'll miss, though, is the phonetic spelling and creative way she's writing now. When she asks how to spell something I don't want to tell her because I love discovering how it seems to her (not to mention that I usually try to have her sound it out).
This was a picture she did last week with a story/caption on the back.
I am a tiger. My skin is orange and black. I am fierce with enemies which are a bear.
Fierce with enemies. I love that. (The bird in the tree is labeled A Brd).
This is a thank you to my sister (look away Muffy if you haven't received it yet) for the Halloween treats she sent.
Thank you for the gifts Aunt Tracy. That headband looks marvelous on me. Love, M.
The pictures are of me (Mom), Me (M), then all her cousins by initial (S, D, D, C, J).
How awesome are these?
M has taken a real leap forward in the last couple weeks with her writing. She started a First Grade Journal at home (not something required for school) and was writing about her day the other night. Today, she bought a diary for recording other notes and such.
What I'll miss, though, is the phonetic spelling and creative way she's writing now. When she asks how to spell something I don't want to tell her because I love discovering how it seems to her (not to mention that I usually try to have her sound it out).
This was a picture she did last week with a story/caption on the back.
I am a tiger. My skin is orange and black. I am fierce with enemies which are a bear.
Fierce with enemies. I love that. (The bird in the tree is labeled A Brd).
This is a thank you to my sister (look away Muffy if you haven't received it yet) for the Halloween treats she sent.
Thank you for the gifts Aunt Tracy. That headband looks marvelous on me. Love, M.
The pictures are of me (Mom), Me (M), then all her cousins by initial (S, D, D, C, J).
How awesome are these?
Thursday, October 15, 2009
Brushfield Spots
When we're outside, E's eyes really show the Brushfield Spots. It's common feature in children with Down Syndrome and I think they make E's eyes look extra sparkly.
When we were at the orchard last weekend, I was trying to get a picture of how beautiful her eyes are, but didn't. I love this one anyway because it shows a little bit of her dimples.
When we were at the orchard last weekend, I was trying to get a picture of how beautiful her eyes are, but didn't. I love this one anyway because it shows a little bit of her dimples.
Wednesday, October 14, 2009
Teachable Moment
Seems I'm running a day behind, so two again to catch up. This blog-every-day commitment is a little fraught with indecision. I have some longer, heavier things I want to write about but haven't had time/energy to do so; there the thought that I should be writing about Down Syndrome (since it's DS Awareness Month); and, well, my memory sucks. Therefore, when something strikes me that I could write more about....by the time I get to the computer to write, it's gone.
One thing that seems keep popping in my mind (hooray! it stayed) was an incident that happened a couple weeks ago. I finally got my act together enough to go to a knit night at a local yarn store. This was my first time and after finding a seat, I sat quietly, only making desultory comments here and there. Across from me (it was very crowded) sat a couple of younger women discussing various things. It was obvious they have some sort of personal friendship and so were chatting in such a way. One (we'll call her ScarfGirl) was debating whether she could possibly be pregnant (but it was way too soon to tell) or was she just sick?. The other (SweaterGirl) had a child (son?) and was reliving her pregnancy symptoms and (I think) sharing about plans for siblings.
Now, I tell you this because if you were in the room, you would have heard the whole thing too. It wasn't as if I was eaves dropping. The store is small; we were less than 5 feet apart. ScarfGirl continued to dissect every possible symptom while also hypothesizing about what it would be like if she were pregnant, clearly torn between wild fantisizing about it being true. Eventually, she said to SweaterGirl, "I just worry about Autism or Down Syndrome."
...
...
...
I said nothing.
I wanted to, but didn't. It would have been rude for one thing. Even though it was crowded and and the conversation was clear amid all the other conversatiosn going on, it wasn't my conversation. Also, I want to return to this group again and I don't want to be THAT mom/woman who had to teach a lesson about Down Syndrome.
I still don't know if not saying something was right. It felt like I should say something. Also, what I would have said probably would have scared the crap right out of her. Oh, I wouldn't have talked about all the super scary things they tell you are possible with a diagnosis of Down Syndrome. I would have told her that of all the things that can happen to a child, in my opinion only, Down Syndrome is one of the least scary conditions out there.
Ever heard of Trisomy 18 (Edward's Syndrome)? Go here and read about Eliot Mooney's life, then go watch this video. I triple dog dare you not to sob by the end of it and know that Matt and Ginny Mooney wouldn't take a child with autism or Down Syndrome in less than a heartbeat.
Or Heather and Mike Spohr, who only knew their dauther for 514 days. Five Hundred and Fourteen. As a parent, you know that this is but a moment in the lifetime you were supposed to have. When their Madeline died earlier this year, prematurity was one of the contributing causes. Heather writes about every parent's nightmare. Half the time I usually swear that I can't read any more because it's so heartbreaking.
Or what about Alexa Stevenson who writes about her surviving twin Simone, but who lost her son Ames.
These are just three blogs from families who have suffered the death of a child. What about all those parents who think they have a pass because they passed their amniocentsis then find out their child has delays, injuries, illnesses.
What is most important, and what is universal to all parents is that being E's mother is not different than being M's mother. That the dianosis is not the child. That as the mother, you love, you worry, you hope, you become frustrated, you dream: you love, you love, you love.
One thing that seems keep popping in my mind (hooray! it stayed) was an incident that happened a couple weeks ago. I finally got my act together enough to go to a knit night at a local yarn store. This was my first time and after finding a seat, I sat quietly, only making desultory comments here and there. Across from me (it was very crowded) sat a couple of younger women discussing various things. It was obvious they have some sort of personal friendship and so were chatting in such a way. One (we'll call her ScarfGirl) was debating whether she could possibly be pregnant (but it was way too soon to tell) or was she just sick?. The other (SweaterGirl) had a child (son?) and was reliving her pregnancy symptoms and (I think) sharing about plans for siblings.
Now, I tell you this because if you were in the room, you would have heard the whole thing too. It wasn't as if I was eaves dropping. The store is small; we were less than 5 feet apart. ScarfGirl continued to dissect every possible symptom while also hypothesizing about what it would be like if she were pregnant, clearly torn between wild fantisizing about it being true. Eventually, she said to SweaterGirl, "I just worry about Autism or Down Syndrome."
...
...
...
I said nothing.
I wanted to, but didn't. It would have been rude for one thing. Even though it was crowded and and the conversation was clear amid all the other conversatiosn going on, it wasn't my conversation. Also, I want to return to this group again and I don't want to be THAT mom/woman who had to teach a lesson about Down Syndrome.
I still don't know if not saying something was right. It felt like I should say something. Also, what I would have said probably would have scared the crap right out of her. Oh, I wouldn't have talked about all the super scary things they tell you are possible with a diagnosis of Down Syndrome. I would have told her that of all the things that can happen to a child, in my opinion only, Down Syndrome is one of the least scary conditions out there.
Ever heard of Trisomy 18 (Edward's Syndrome)? Go here and read about Eliot Mooney's life, then go watch this video. I triple dog dare you not to sob by the end of it and know that Matt and Ginny Mooney wouldn't take a child with autism or Down Syndrome in less than a heartbeat.
Or Heather and Mike Spohr, who only knew their dauther for 514 days. Five Hundred and Fourteen. As a parent, you know that this is but a moment in the lifetime you were supposed to have. When their Madeline died earlier this year, prematurity was one of the contributing causes. Heather writes about every parent's nightmare. Half the time I usually swear that I can't read any more because it's so heartbreaking.
Or what about Alexa Stevenson who writes about her surviving twin Simone, but who lost her son Ames.
These are just three blogs from families who have suffered the death of a child. What about all those parents who think they have a pass because they passed their amniocentsis then find out their child has delays, injuries, illnesses.
What is most important, and what is universal to all parents is that being E's mother is not different than being M's mother. That the dianosis is not the child. That as the mother, you love, you worry, you hope, you become frustrated, you dream: you love, you love, you love.
Tuesday, October 13, 2009
Creative
A short post today to satisfy 31 for 21 and because I'm running out of laptop battery. My friend Rebecca recently opened a store and I've been meaning to talk about it and her.
The store is in Defiance, Ohio and is called S Type Creative. It's lovely. Lovely, lovely, lovely. She features her own art (amazing!) as well as that of other local artists. There's photographs, paintings, jewelry, yummy body stuff (soaps, candles, etc.), pottery, etc.
I'm not sure how it happened, but her presence in my life reminds me to be creative, to have beauty, and to be fearless. She's one of the most talented people I know. Go see her store (online or in person) if you're able.
The store is in Defiance, Ohio and is called S Type Creative. It's lovely. Lovely, lovely, lovely. She features her own art (amazing!) as well as that of other local artists. There's photographs, paintings, jewelry, yummy body stuff (soaps, candles, etc.), pottery, etc.
I'm not sure how it happened, but her presence in my life reminds me to be creative, to have beauty, and to be fearless. She's one of the most talented people I know. Go see her store (online or in person) if you're able.
Monday, October 12, 2009
Monday (Last)
Our neighbor brought over the parasol last Sunday while Big Daddy and Opa were installing a new screen door. Oma was watching E during construction and M and I were at my cousin's swim meet. When we got home, Big Daddy gave M the parasol and the remainder of the night was spent talking about it, using it for various things. I believe Oma was even enlisted to hold an umbrella (they were outside) while performing some little theatrical event.
Monday morning, this was what the parasol inspired:
Monday morning, this was what the parasol inspired:
Sunday
Before we had a full day of fun at Ikea and with family, I fed E breakfast. Yes, that is her foot on top of the high chair tray.
Saturday
Saturday, we went to a local orchard for pony rides, train rides, and doughnuts. Unfortunately, everyone else wanted doughnuts too, so we skipped those and went on ponies and trains. E rode a pony with Big Daddy assisting this time, but didn't seem to like it so much. I didn't get a still picture, but we do have the movie of them.
Friday, October 9, 2009
A Recent Conversation
Date: Wednesday, October 7, 2009
Location: My car on the way to dance
Time: 3:40ish
M: Mom? What's Aunt Darlene's first name?
Location: My car on the way to dance
Time: 3:40ish
M: Mom? What's Aunt Darlene's first name?
Thursday, October 8, 2009
Language
Because E's speech is delayed, we've been using some basic signs (actually good for all kids) to communicate. Signs like eat, more, drink, play. We also have the Baby Signing Time* videos which we started watching this summer. I've tried them in the past, but she hadn't seemed too interested (e.g., totally ignored the TV), so I've tried them periodically and E finally keyed into them as you can see.
In the last month or so, she started signing more and eat. Last night, while having snacks while M was at dance class, she signed this:
More crackers! Booyah!
*note, the Baby Signing Time videos are awesome. The picture of E watching, though, is of a different video, but I loved the pose. Here she is watching Baby Signing Times. Also, it was hot that day and there's always laundry in my living room. Who's keeping score when my baby says more crackers!
In the last month or so, she started signing more and eat. Last night, while having snacks while M was at dance class, she signed this:
More crackers! Booyah!
*note, the Baby Signing Time videos are awesome. The picture of E watching, though, is of a different video, but I loved the pose. Here she is watching Baby Signing Times. Also, it was hot that day and there's always laundry in my living room. Who's keeping score when my baby says more crackers!
Wednesday, October 7, 2009
Physical Therapy
E has been going to physical therapy for a year this month. She's really progressed since her first visit. We've had the good fortune of having great therapists. Our original therapist (from the same home town as I was!) moved on to a position in the schools, which is great for her, but sad for us. Over the summer, though, our original PT (Mrs. Jamie) was on vacation so our substitute (Mrs. Cindy) was the PT in our school system. E really liked her and it was nice to get some information about preschool an
d other school-based services. We're hoping to go visit preschool soon, especially since it's in our primary school (the one M goes to)!
Since Mrs. Jamie left, however, we've had Mrs. Joan who happens to have been in our school district before Cindy was (confused yet?). This has been lovely as well because she, too, is still in touch with people, knows our district and administration, etc. If possible, E has responded even more to Joan, who is very much old school with hugs, kisses, silly songs, etc. It really suits Joan's personality and E just works really hard for Mrs. Joan.
I usually try to predict how far we will get home before E falls asleep. This is what she looked like when we arrived home.
d other school-based services. We're hoping to go visit preschool soon, especially since it's in our primary school (the one M goes to)!Since Mrs. Jamie left, however, we've had Mrs. Joan who happens to have been in our school district before Cindy was (confused yet?). This has been lovely as well because she, too, is still in touch with people, knows our district and administration, etc. If possible, E has responded even more to Joan, who is very much old school with hugs, kisses, silly songs, etc. It really suits Joan's personality and E just works really hard for Mrs. Joan.
I usually try to predict how far we will get home before E falls asleep. This is what she looked like when we arrived home.
Snacking
I'm on a popcorn kick for snacks. Did you know that you can pop corn in the microwave? No? Neither did I until I picked up a cookbook (no, I don't remember the name or chef, only that it was blue) awhile ago and learned you can make your own microwave popcorn. To do so:
Put:
1/4 popcorn into a brown paper bag (the kind you took your lunch in)
oil (optional, I usually put some in by just pouring some into the cap)
Fold the top of the bag over and put it into the microwave. We have a popcorn setting, so in probably 2:00 - 2:30, it's done! Add favorite toppings.
This is what I did last night while not posting on day 6 of 31 for 21.
Put:
1/4 popcorn into a brown paper bag (the kind you took your lunch in)
oil (optional, I usually put some in by just pouring some into the cap)
Fold the top of the bag over and put it into the microwave. We have a popcorn setting, so in probably 2:00 - 2:30, it's done! Add favorite toppings.
This is what I did last night while not posting on day 6 of 31 for 21.
Monday, October 5, 2009
Party Cat Central
Someone in this household is thinking that, when I put her down at 6:40, that I didn't mean it.
After sleeping for a couple hours (a little restless), E has been up since a little before 9:00. When it first became obvious that she was really awake (versus just light sleeping), I went in to see if she had poopy pants (which she doesn't particularly care for) and because she's been having a tough time with teeth today. After a dose of ibuprofen and some teething stuff on gums, I put her back in bed. M staggered out from her room all disoriented and needed to go to the bathroom. She was still so in her own world that it was like taking a newly trained kid to the potty. Then back to E's room for a little cuddle in the hopes that would settle her down. Nope, she's so tired that she's in a giggly, silly mood which makes it fun to be with her, but not so much sleeping. This is the one drawback of teaching kids to put themselves to sleep in their own bed: the fact that going in for a cuddle and some rocking only means that its time for her to look at everything and play with mama.
Again, back in the bed, only to listen to her giggle and coo and roll around, content to be awake while mama is desperately waiting for her to sleep so I can go to the Land of Nod. Finally, I just went in, changed her, put her in her sleepy sack, gave her a bottle, rocked for a couple minutes and put her down. We'll see what happens.
ETA: Right, I do believe yesterday was the full moon. Explains much.
After sleeping for a couple hours (a little restless), E has been up since a little before 9:00. When it first became obvious that she was really awake (versus just light sleeping), I went in to see if she had poopy pants (which she doesn't particularly care for) and because she's been having a tough time with teeth today. After a dose of ibuprofen and some teething stuff on gums, I put her back in bed. M staggered out from her room all disoriented and needed to go to the bathroom. She was still so in her own world that it was like taking a newly trained kid to the potty. Then back to E's room for a little cuddle in the hopes that would settle her down. Nope, she's so tired that she's in a giggly, silly mood which makes it fun to be with her, but not so much sleeping. This is the one drawback of teaching kids to put themselves to sleep in their own bed: the fact that going in for a cuddle and some rocking only means that its time for her to look at everything and play with mama.
Again, back in the bed, only to listen to her giggle and coo and roll around, content to be awake while mama is desperately waiting for her to sleep so I can go to the Land of Nod. Finally, I just went in, changed her, put her in her sleepy sack, gave her a bottle, rocked for a couple minutes and put her down. We'll see what happens.
ETA: Right, I do believe yesterday was the full moon. Explains much.
Sunday, October 4, 2009
Our First Grader
M started 1st grade in August. It's been a fairly smooth transition. I think that I have more problems with it than M does. I find I really dislike the confining nature that school causes on our lives. All of a sudden, we can't plan trips or activities because of being concerned about M missing school. Also, while I'm happy with M having friends to play with and developing socially, I only feel the need for it to happen about three times a week. These reasons make homeschooling more sensible on many levels, but that's for another day.
Nothing, however, says first grader like missing teeth and M lost three of hers in one week*.
Her first tooth (her left lateral incisor) just fell out while she was wiggling it (which was a good thing as I'm a little squeamish about the loose tooth thing). She came running in the bathroom where I was getting E out of the tub yelling, "Mom, it came out!" in an excited/panic voice. She was so excited, though, that we called Big Daddy (who was at a gig) to tell him the good news. The Tooth Fairy came and left her $1.
The second to go was her right front tooth (central incisor). This was a Big Daddy assisted operation that went smoothly mid-week (I don't remember exactly when). So now M has two missing top teeth with one major, very loose tooth to fill the gap. Once again, the Tooth Fairy left $1.
The last to go in this round was the solitary left front tooth. This was a battle royale. The tooth was ridiculously loose but M wouldn't pull it. After much crying, wailing, promises that she would do it, it came down to me holding her and Big Daddy quickly pulling it out. Seriously, a minute later, you'd thought the 45 minutes of drama never happened and another $1 from the Tooth Fairy is going a small way to replenish empty coffers. All was forgiven and there's been speculation about the right lateral incisor and it's impending progression and eventual removal. Oy.
*Note: M's eyes in this picture are really red due to a sensitivity to the hand sanitizer they've been using at school. Once we discontinued use, her eyes cleared up!
Nothing, however, says first grader like missing teeth and M lost three of hers in one week*.
Her first tooth (her left lateral incisor) just fell out while she was wiggling it (which was a good thing as I'm a little squeamish about the loose tooth thing). She came running in the bathroom where I was getting E out of the tub yelling, "Mom, it came out!" in an excited/panic voice. She was so excited, though, that we called Big Daddy (who was at a gig) to tell him the good news. The Tooth Fairy came and left her $1.
The second to go was her right front tooth (central incisor). This was a Big Daddy assisted operation that went smoothly mid-week (I don't remember exactly when). So now M has two missing top teeth with one major, very loose tooth to fill the gap. Once again, the Tooth Fairy left $1.
The last to go in this round was the solitary left front tooth. This was a battle royale. The tooth was ridiculously loose but M wouldn't pull it. After much crying, wailing, promises that she would do it, it came down to me holding her and Big Daddy quickly pulling it out. Seriously, a minute later, you'd thought the 45 minutes of drama never happened and another $1 from the Tooth Fairy is going a small way to replenish empty coffers. All was forgiven and there's been speculation about the right lateral incisor and it's impending progression and eventual removal. Oy.
*Note: M's eyes in this picture are really red due to a sensitivity to the hand sanitizer they've been using at school. Once we discontinued use, her eyes cleared up!
Saturday, October 3, 2009
Summer Fun
Pictures from this summer's Classic Car show. This is always a great time because they have free horse rides. We tried our E out on them because she'll be eligible for hippotherapy when she's 2. She didn't seem to mind the horses and M always loves to ride the ponies.
E.'s hair is really long, so I've been trying to put it up. She resists, hence her new nickname -
The Pigtail Menace.
E.'s hair is really long, so I've been trying to put it up. She resists, hence her new nickname -
The Pigtail Menace.
Laundry
Here Mama, let me help!
What do you mean that was folded? I think it needed to come out then go back in after a little lie down on the floor.
Are we helping now?
What do you mean that was folded? I think it needed to come out then go back in after a little lie down on the floor.
Are we helping now?
31 for 21
There a blog I read regularly (I Don't Know What to Say) that is written by a woman who is a mom to two kids. Her son is a year younger than M and her daughter just turned 3 and has Down Syndrome. She usually has some really good things to say and it's really interesting to me to watch and learn from other moms in similar circumstances.
Anyway, October is Down Syndrome Awareness Month and many bloggers participate in 31 for 21. Cate (from the blog above) posted a reminder, so I thought I'd give it a try (and will count this as 1 entry!). If you want more information about Down Syndrome, please visit the National Down Syndrome Society website.
Wednesday, September 30, 2009
Awareness
This is how M looked Monday coming out of school. We had an eye doctor appointment and I told her to take sunglasses in case they dilated her eyes (they didn't!). She had to show Big Daddy her "look" and he took the pictures. I was transferring pictures from the cameras today and saw it and immediately thought I'd be witty if I made some Unabomber comment.
Then I thought again for a couple of reasons. First, I wouldn't appreciate it if someone made it about her. She's beautiful and innocent and the antithesis of what Ted Kaczynski did. What kind of mother would I be to link my girl with evil actions?
Second, after we had E, I read an article about our language and such. In this article, it pointed out that using "to drink the Kool-Aid," may seem pretty innocuous and harmless; a way to designate someone being a sheep. In reality, family members of the 909 people who died at Jonestown probaby don't feel it's harmless (read the Wiki entry, it's heartbreaking).
I've tried to write about this before, but began to really think about it regarding this picture and my initial impulse. I checked it because three people were killed and twenty-three others injured. These people have loved ones who probably don't feel like their life is a throwaway comment because of the bombings, not to mention the rest of the Kaczynski family.
Because on occasion I try to improve as a human being, I only direct you to look closely at my beautiful girl and note the missing teeth.
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