No Twisted Panties

Here's how my brain works.....
I want to do 31 for 21 and in fact enjoy writing and blogging about our lives.
I commit to 31 for 21.
I miss a day (or four).
I beat myself up and feel guilty.
I decide I will make up all the posts.
Live is crazy busy and catching up seems overwhelming so I avoid and do other things (Hello Airport Mania!).
I feel guilty and think about not blogging or catching up...alternating these steps ad nauseum.

So....here's the thing.  Work has been crazy busy, our lives have been crazy busy, sometimes by the end of the day I'm not interested in talking any more and just want to veg out. Sometimes I suck it up an blog, sometimes I zone out. I've decided I'm not catching up unless I find I have more than one thing to say in a day and that I'm going to do what I can to blog for 31 for 21, but the reality is that we have a normal, busy life and that's more a testimony for living a life of normalcy with DS than anything else I can write.

Counting

So, we count with Ellie using sign language and we've varied it up. (I once had a colleague explain his theory that parents weren't teaching their kids to count because they usually said, "Now I'm going to count to three and then..."  I've always thought that was very funny but true).  We'd count to three or five when jumping into the pool this summer; and when she started scaring people (funniest thing ever...will have to get video for it)...we count to five, then spell or sign the name of the person we're scaring, then scare them!

While counting various things, we also read lots of books with counting and numbers.  The 10 Little Ladybug book was in heavy rotation for a while and it counts backwards from 10 and she'll read through it and sign/say the numbers and whatnot.  We also count how many bites she has to eat of something she's not particularly keen on. 

Anyway...point is...we count.  Numbers are fun!

The other day, I picked Ellie up from daycare and found her sitting in the little mud ditch outside.  Yay!  So bath time was moved up from after to dinner to when we walked in the door.  She doesn't love having her hair washed so I usually tell her how many pitchers/cups of water I'm going to pour.  Wednesday night, I said okay, four times and then poured a cup of water on her head.  Before I could say three, Ellie says/signs three, then we did two then one.  I don't know for sure that she was counting the pours backward, but on the other hand, I don't know that she wasn't accurately counting.  From her verbal and facial expression it seems like she knew she only had three more to endure. 

At first I was surprised and excited because I didn't expect her to do the backward count!  Yay Ellie!  But then, I find myself beating myself up because I should expect her to do it and shouldn't be surprised at how much she knows.  I think she knows lots and lots but because she doesn't have the verbal or sign language capacity, we don't know how much is locked in her beautiful head. She's a little sponge who is a keen observer and I usually feel like we could be doing so much more with her (more flash cards, more therapy, more, more, more!!!!!); and it become more and more obvious that there is (and has never been) any lack in her; that I am really the one that needs the work.

Why I Missed Day 4

Essentially, it's a noneya.  :-)  In reality, though, Thursdays are melt down nights in our house.  Everyone is crabby and ready for the week to be over.  On top of it, on Thursdays, Big Daddy goes to work, Meredith to school, Ellie to preschool then daycare, I go to work. We all arrive home around 4:00/4:30 ish (I'm I'm not late) and we quickly scarf something down then Big D and Meredity head to soccer practice and Ellie and I go to hippotherapy.  Home again around 7:30, quick getting everyone ready for bed, lights out, then whew!  I was done.  I curled up in bed, read quietly, and went to sleep.

I don't know why Thursday is our very bad, no good, horrible day.  We first noticed it (I think) after Meredith was born.  Tony and I would find we were nitpicking and sniping at each other and then we finally realized that it usually seemed to be on Thursday.  I don't know if it was just being tired by the end of the week of juggling work and schlepping Meredith around, but at some point on Thursdays we just look at each other and go "it's Thursday."  Then hold it together until girls are in bed and everyone goes to their separate corner.

So that's my excuse.  Now, I'm going to post about what Ellie did in the tub on Wednesday!

Strident

The day has been long and frustrating and I don't have much to say since it feels like everything that comes out of my mouth is harsh.  I hate the tone and try for patience buy failed, failed, failed today.  Hopefully, a good night's sleep and deep breaths will help tomorrow.  If not, how needs happy pills when there are donuts?

What I've Been Doing

Reading:

Generation X Doesn't Want to Hear It


Open Letter to that 53% Guy

Listening:
PlanetMoney Podcast

The Bugle Podcast (warning, contains lots of swearing)

Watching:


My Redeemer Lives (you will need kleenex) More information about Team Hoyt

(and for more inspiration...you know I love Signing Time, but Rachel Coleman's personal story is pretty inspiring as well.  This post in particular "Strong Enough."

I am loved

Backstory:  We like Legos. M is very creative with her Legos and one of our recent builds was an airplane.  After it was built, we named the pilot Steve Kerplansky.

Last night (6/22/11)
M:  Mom, can I show you my Lego people?

Me:  Sure

M:  Bringing out her people all arranged and begins naming/explaining them.  There's Steve, Steve Kerplansky.

Me:  I love Steve Kerplansky.

M:  Steve Kerplansky loves you.

Wow.

I hope I can teach my girls to be more than pretty.

I hope I can learn to want to be more than pretty too.

Rescued

I couldn't stop watching the rescue of the Chilean miners. It's been riveting.

I Don't Want to Talk About It

I'm struggling.

I've been struggling for a while truth be told. Some of it has been the stress of Big Daddy's stroke, some of it is the fact we have a non verbal 2.5 year old who is a very typical terrible two (new nickname Destructo), work, M not liking summer camp, Big Daddy's heart surgery, and E's transition planning for preschool in January. Then, just for fun, be on a birth control pill that, while preventing pregnancy and the monthly blood bath, seems to exacerbate and extend every crazy PMS symptom. It's possible that I spent the month of September not talking to anyone because all I could think in my head was for people to shut up (actually, much more offensive than that). My brain decided that everyone was my enemy and I was hating most people.

Luckily, it finally dawned on me that The Pill was the only thing messing with me chemically and when I stopped it last weekend, whew! It would seem that I do like my husband and children.

But it sucks, this struggling. I don't like feeling that I should be doing better or have it all in control. I hate not being the example I want to be for the girls. I hate, mostly, that I've isolated myself (in defense, I knew if I started down the crazy road, it wouldn't stop).

I've decided, however, that I'm going to keep posting for 31 for 21 even though I'm behind. I'm going to be okay with not getting 31 posts in this month. I going to be okay with making progress towards being the mom I want to be, the wife I want to be, and the person I want to be.

I do have lots to say about Down Syndrome and I really like reading other parents' 31 for 21 posts. Some of them are hard and some of them really make me think. I have a lot to say about the transition crap (like a social worker who schedules testing without consulting us, then having a bit of a snit when I told her no; or when they scheduled it for 2 weeks before Christmas break) which makes me really aggravated. As Cate says about her daughter, "She's a person not a project." That's a whole other rant post for another night. In the meanwhile, enjoy our family picture from Disney.

State of Grace

The online dictionary gives this definition (#8) for Grace:
Theology
a. the freely given, unmerited favor and love of god
b. the influence or spirit of God operating in humans to regenerate or strengthen them.
c. a virtue or excellence of divine origin: the Christian graces
d. Also called state of grace. The condition of being in God's favor or one of the elect.

I first learned about the state of Grace in college. The Chaplain (phenomenal woman) explained it while counseling a friend who was undergoing crisis. I don't remember how this friend and I intersected at the moment of crisis, only that in the afterward, the lasting remembrance is her explanation of being in a state of Grace.

I've experienced other moments of Grace throughout my life. Moments where I was blessed/lucky/fortunate/good karma, etc. I think I call them various things depending on circumstances. But I know that Big Daddy and I were in a state of Grace when he had his stroke on July 11.

There were so many things that could have gone wrong, but instead, everything went right (if you call having a 45 year old man with few risk factors have a stroke right). He woke up and went to the restroom which woke me up enough to hear him return to bed and then his distress when he couldn't move his right side. The paramedics took him to our hospital with a stoke center within an hour of of the onset of symptoms (he was text book). He wasn't bleeding in his brain (an ischemic stroke), making him eligible for Tissue Plasminogen Activator (tPA), which he received at 3:20 a.m. He was also lucky to have had his stroke on the morning of July 11 as there were 7 other strokes that day/night, so the Chair of the Neurology department/Stroke Program Director was still at the hospital and administered the tPA.

That at 4:00 a.m. (40 minutes after the "Lazarus" drug was administered), Big Daddy was back. When Katie the ER nurse when through the response drill (raise your left leg, raise your right leg, raise your left arm, raise your right arm, follow my fingers with your eyes, etc.), Big Daddy could kick both legs (Katie and I looked at each other like, Did you see that?), then when he could respond to all her requests and I looked at his eyes and saw him looking back...that moment was one of undisputed grace.

And there were more....neighbors who came over in the middle of the night to stay with the girls (who never woke up which is another gift of epic proportions), people who found us a sitter to stay Sunday night who turned out to be friends with our neighbors across the street, colleagues who asked what do you need and would have come to our aid if asked, family who answered calls at 5:00 am and 7:00 am and drove to help me with the girls, other family who answered calls at 6:00 am and came to the hospital to be with their only son.

It became an embarrassment of riches, the offers and desire of those who wanted to help. I'm only thankful that we didn't need them. But it's humbling to know that the offers were there and that many more were not made, only because we were so very, very fortunate and our needs were easily managed. That we were blessed.

I like the 2nd definition of the state of Grace - to strengthen or regenerate them. Instead of looking at all the things that might have been, I try to focus on the fact that this occurred in my beloved so that we can fix the underlying mechanical reason for the stroke to have reached his brain (Patent Foramen Ovale) and that reducing risk factors means some medication and lifestyle changes, something we've both been saying we need to do to live long for the girls.

Like all growing opportunities, though, the aftermath of Grace is challenging. Learning to live in this new reality, one of which really has few side effects - I can't help but wonder about the others who had strokes on the 10th/11th and wonder at their outcomes and if they were as lucky as we - has it's moments. I'm learning how not to worry every time Big Daddy gets up in the night and there was his extra concern over my headache last nigh. It's good to care for each other, but it's also a side effect of the experience for a while. Like all new things, it will take us time for the regeneration to feel normal. In the meanwhile, my heart and soul are overwhelmed and the myriad of gifts and love bestowed on us. On the Grace that is our lives.

Summing Up

It occurs to me, as I sit reading through other people's blogs that perhaps I should update all here.

To sum up:

• The big E turned 2 on January 2nd! (party to be held in March)
• Big Daddy had Meniere's and suffered through a low salt diet for 3 weeks before learning that he really has a hole somewhere that is leaking sound.
  
• Big Daddy also has a bum knee that needs some cleaning out via a scope
• We've had three "yellow" days from the M which means that she's broken class rules. This has resulted in many days of arguing and butting heads. If I didn't know better, I'd think I was living with a teenager
• I started a job! Part-time, nonprofit dealing with a preventable birth defect. I'm not linking directly because of the whole work separation thing, but if you know me is other social online areas (facebook, twitter, ravelry, etc.) you'll probably figure it out soon enough
• M is doing both dance (W) and swimming (Th) during the week
• E is doing speech (2x a month), physical therapy (2x a month), and occupational therapy (1x a month). Our PT thinks we should also add in a weekly play group. Yikes!
• For those who asked, M received a Just Like You doll (now named Rosie) that looks nothing like her. In fact her four preferred JLY dolls were: fair skin, blond, brown eyes, freckles; fair skin, brunette, blue eyes; medium skin, curly dark brown hair, brown eyes; light skin, brown-black hair, brown eyes (Sorry can't link because of how American Girls configures the dolls).
• ETA; Oh, yes, I forgot, in addition to our therapy schedule (see above), we've seen our pediatrician for our 2 year well check, had blood work done (thankfully we sync up our endocrinologist and pediatrician labs for only one draw), saw our endocrinologist, and had our teeth cleaned.
  
• Everyone was caught up on their H1N1 vaccinations (Woohoo!)
  

Some (old) photos:

Santa Baby

"Uh Santa, I am way too tall and cool to sit on your lap."
(from my friend Leslie! Hi Leslie!)

Holiday 2009 Pictures



































































(note: E has always clasped her hands together in this really delicate, prim way. I was really happy to have a picture of her doing it. When my mom saw it, she loved how it captured this characteristic of E.)

Babushkas!

Santa brought E play silks which we've loved. I put one over her head, then over mine.
Then, I put them all on her and she thought she was cooler than the other side of the pillow.

Merry Vomitus

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.

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.

The End

It's the end of 31 for 21. Thanks to Tricia for making it happen.

Here are things I learned/accomplished:

1. Although I didn't post everyday (doubling up these last few days), I have posted 31 times this month! Yay me!
2. 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.
3. I visited every blog on the 31 for 21 list. I bookmarked quite a few.
4. 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.
5. I've really appreciated those who have commented here. Thanks!

Stay tuned for more in November!

What It Is, Part 246549841

From another mom:

Non-offensive Language 101

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:

• 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)

Finally, regarding vaccination. I'm not a medical professional. As a public health person, though, I think that vaccines are great. Along with clean water, they've transformed human health. I have received a flu shot every year since 2003 and the girls have too. We've all had our seasonal shots, but not H1N1 yet. I know there are concerns about it but here are some of my thoughts if you're interested:

1. 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.
2. 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.
   
3. 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.

The other information I think is really important about the pandemic is this: DON'T PANIC. In most serious crises, the "walking well" overwhelm medical systems causing them to collapse. During the project that I worked on this summer (I was a contractor for public health departments), the statistics for those people who were well (or able to recover with basic care - fluids, over the counter medicines, etc.) but went to the hospital for care was 10x the admissions of actual patients who needed medical care. Yes. 10 times. Let's do the math, shall we?

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.

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."

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...

...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].

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].

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:

1. 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.
2. He's funny.
3. He's smart.
4. He's an amazing father.
5. He's cool.
6. He's a musician.
7. He's creative.
   
8. He's able to fix things.
9. 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.
10. He's a good cook.
11. He does more than his share of housework and changing of dirty diapers.
12. He's not the person he was when we married. He's better and continues to be so as time goes on.
13. We balance each others' strengths and weaknesses.
14. He likes to read.
    

There are, of course, may more things about my beloved, but I'll save them for our future anniversaries.

Happy Anniversary.

YFB