Life of the Bubelas

Halloween Hoot

2011-10-27T17:46:00.001-04:00

What I've Been Doing

2011-10-25T16:38:00.002-04:00

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."

Awareness

2011-10-06T21:24:00.002-04:00

October is Down Syndrome Awareness Month.

It's also:

Eye Injury Prevention Month
www.geteyesmart.org/eyesmart/injuries/index.cfm

Home Eye Safety Month
www.preventblindness.org

National Breast CancerAwareness Month
www.nbcam.org

National DisabilityEmployment Awareness Month
www.dol.gov/odep

National MedicalLibrarians Month
www.mlanet.org/resources/nml-month/index.html

National Physical TherapyMonth
www.moveforwardpt.com

Spina Bifida Awareness Month
http://www.facebook.com/spina.bifida.learn

Stop America's ViolenceEverywhere (SAVE) Today
www.amaalliance.org

Sudden Infant DeathSyndrome Awareness Month
www.firstcandle.org

Which seems like a lot to get behind in one short month. This doesn't include the weekly observances or daily observances, such as Mental Health, Walk to School, Stuttering, Latino, World Food, etc. And when I look at the list, I'm for preventing/improving outcomes for all of these, even the juggernaut of Breast Cancer (see The Big Business of Breast Cancer for an interesting look at it).

The important thing about all these days no matter how random they may seem is that there's usually a person who has had their life changed through an eye injury, stuttering, breast cancer, a diagnosis of down syndrome, etc. I've seen Plato's quote "Be Kind for Everyone You Meet is Fighting a Hard Battle" in various places lately, and this list of observances is a good reminder of how true it is.

ButterflyHouse

2011-10-06T11:45:00.003-04:00

It was a parent involvement day at preschool. It was also one of the first outings that we had by ourselves that was for fun. E. had a good time, I think. So did mommy.

Firsts

2011-10-04T22:20:00.006-04:00

This past weekend we went to our first Buddy Walk. Just E & I walked as Big Daddy and M had a soccer game. They joined us later for the post walk entertainment (more on that in a minute). I haven't been very involved with the local Down Syndrome group and worry that I'm missing out on some valuable input or information. Or just finding a network of people. But then I go to a mom's night out and don't really care for the other women there and don't readily connect with some of them, so don't go back.

It's my own fault to some extent, but it also underscores the fact that just because we have children with the same condition, doesn't mean we're going to be besties. I'm not friends with mom's who have brown-eyed children either. Having a child with DS only gives us one thing in common. It may be a jumping off point, but so far, for me, it's been like the motorcyclists who wave at other motorcyclists as if to say, "I acknowledge you and approve your mode of transportation," but have no other interaction.

Anyway, so despite not being too involved in our local DS group, we wanted to go to the Buddy Walk this year because Rachel Coleman from Signing Time was the featured guest/performer. I mentioned previously that E signs. Most of her signing has come from watching Signing Time. That's her (left) watching Baby Signing Time at about 18 months. She's progressed through everything they've put out and we're eagerly awaiting new episodes. Given that Alex, Leah, Rachel & Hopkins have been in our house everyday for the last two years, we jumped at the chance to go meet them.

I worried that E would lose her mind seeing Rachel, but she didn't. I think it was because we see her everyday, why wouldn't she be somewhere. What really drew E's attention, though, was Hopkins. He was really fun.

During the performance, E turned away some of the time even though Rachel & Hopkins were singing some favorites that she's asks for - In a House is one E likes to sign before bed, Magic Words was the first song that I noticed E signing/singing along to in the car, Signing Time Theme Song she likes to sign along with Rachel...preferable looking in a mirror - anyway....E didn't lose her mind like I thought she would but it was fun nonetheless. The highlight was at the end when Rachel sang The Silly Pizza Song.

She asked what was first and I signed apple, then what was next (crackers), then she saw I was signing the list and asked what was next (ice cream), next (I said bread but it was wrong and quickly corrected to cereal), then next (bread), when Rachel said you should come up and sign...so E and I did! Big Daddy was there to video (below), so you'll see us doing so. Unfortunately, E didn't show all the signs she knows (she's really awesome at extra cheese) probably because of the speed (we do it slower at home by ourselves) and the distraction of Rachel & Hopkins, but it was fun. At the end, Rachel looked over to me and said, "You're very brave," and I said, "We live you," which is true. Signing Time music and videos are a constant part of our day. But my love letter to Signing Time must wait for another day. Until then, here we are at the 2011 Buddy Walk.

Silly Pizza Song w/Rachel Coleman (plus some)

31 for 21

2011-10-04T22:15:00.003-04:00

It's October, which means I'm behind already for the 31 for 21 Challenge in support for Down Syndrome Awareness. So, I'll be double posting to catch up (probably all month) and finally writing down some thoughts and activities that have been going on here.

First Day of School

2011-08-28T10:42:00.001-04:00

The Update

2011-08-28T10:18:00.004-04:00

So...still no ASL interpreter for E. We met Friday (8/26) with the District Director, Asst. Director, Principal, Teacher (we love her), the SLP (Speech Language Pathologists for those not in the know :-)). Of course they started out with...we think we're meeting her needs. To which I replied, if you don't have someone in the room who can interpret her and who can interpret classroom lessons into a language that E can use back, then no you're not. After much back and forth in which the Teacher and SLP admitted that they don't sign 100% of the time, do not know her vocabulary (despite us giving them a list last year that they haven't mastered), that she only really signs to them and doesn't verbalize....the district offered to have the situation evaluated. I asked for what and they made noises like they really want to make sure that the teachers really aren't meeting E.'s needs, but what they really want to know is whether E really signs.

There were many fun moments (like when Big Daddy had the Director so wound up (which is very unlike him...go Tiger Dad!) she looked to the Asst. Dir and asked her to explain what the Director clearly didn't want to answer), but my favorite was when I took the pre-written letter out of my file, signed it and passed it over saying, okay, we're done here, we'll let you know about any evaluation, but in the meanwhile..you've our permission to speak with Xattorney at the Ohio Legal Rights Service (OLRS). That was a nice moment. Then we signed our agreement to the OT/PT goals (we had them reviewed by our private therapists) and clearly wrote our disagreement to speech language (which only have receptive goals listed....somehow E's supposed to magically acquire expressive goals) and requested expressive goals for our next meeting.

So, we're waiting to talk to the OLRS attorney and will move from there. I'm guessing we have to play the delaying game, but maybe not as we have documentation from our private SLP and ENT (which is on the way) stating E's use of sign as her primary form of communication. Given that and the admission from the staff (which we have on tape....highly recommend recording all IEP meetings), and the fact that without someone to interpret in E's primary form of communication they're denying her access to FAPE (she can't access the curriculum without an interpreter), I'm not sure they have too strong a leg to stand on. Will update as we go along.

Gearing Up

2011-08-25T14:44:00.002-04:00

Tomorrow, Big Daddy & I meet with IEP team. In May, we didn't sign the IEP because it was singularly lacking in the necessary accommodations to fit the Little Peep, specifically her language and communication needs. Little Peep signs. A lot. Like knows all the signs from the Signing Time series (yes, Baby Signing Time, Series 1 & 2, Sing & Sign, the Practice Time). We've moved on to others even though they're not as good.

The problem is that she needs language now, not just vocabulary. So in May we asked to have someone proficient in American Sign Language in the room. We were denied with the following excuses:

Her fine motor wasn't good enough (crap, she does approximate some signs, but what better OT practice than finger spelling the alphabet - which she does)
She does have expressive or receptive language (duh, that's why we need someone to model it for her)
What if she's never verbal; how will she communicate in her community? (yes, like people who are deaf or have hearing loss can't function)
The speech language therapist for the school offered to cut out more pictures from the ASL dictionary to past around the room to help teachers/aides/therapists (I said that was teaching vocabulary, not language and doesn't demonstrate language in a natural way. I didn't expect to have to explain that to a trained professional)
We were offered to have the teacher of the child with cochlear implants come in for 15 minutes every day to "talk" to E.

We've spoken to other therapists, our private therapists, language people, advocates, and others and we're working on going through the process to get her what she needs. It's just crap that most of the push back and (ignorant) excuses came from the director of the program, who didn't understand that if 33% of E's signs are being missed, it's their fault.

There are other issues with the school/process that we're working through, but think they deny to see which families will continue to fight. Given we're exhausted from all the other things in a day, I'm guessing many families don't go through the appeal process because they trust the "experts." I know our E responds to those who are proficient in ASL and know it will help her develop her language and communication even more. And Bob help the district because I'll take them to the mat to fix this no-brainer for her.

I am loved

2011-06-23T14:39:00.001-04:00

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.

Recent Conversations

2011-06-18T14:10:00.001-04:00

Monday, June 6, 2011 - Driving near Milan, MI
M: Mom, I just saw a sign that said "Don't pick up chipmunks!"
Me: What?! Don't pick up chipmunks?
M: Yes, there was a sign.
Me (looking around and finally noting the prison near the side of thr highway). Did the sign say, "Don't pick up hitchikers?"
M: No, it said chipmunks.

***discussion follows about what are hitchikers, why the sign is posted, prison breaks, and the importance of not hitting chipmunks OR picking up hitchikers ***

*************************************

June 16, 2011
While rough-housing with me:
M (yelling): Dad! Dad! Come save me, Mom's going to eat me
Me: Why would I eat you? You wouldn't taste very good.
M: I'd taste like bacon.

Invention

2011-04-30T16:39:00.000-04:00

This is what happens when you don't let kids watch tv. The grow up to imagine all sorts of things. The Cosy Coupe is really a horese named Sparkey and the stretch tri-stroll extends the life of the Pooh bike. It's even better when both girls are in the tri-stroll.

Me & Bunny

2011-04-30T16:33:00.001-04:00

This is one of the best pictures of us.

What Its Like In My House Today

2011-04-09T10:35:00.002-04:00

Sally Jensen, Kid Lawyer (not a lawyer for kids, a kid who is a lawyer)

Sporty Spice & Super Fly

Me & The Smoochies

2011-04-07T10:41:00.003-04:00

The Week in Pictures

2011-02-19T15:24:00.000-05:00

My Valentines

2011-02-14T08:10:00.001-05:00

Wow.

2010-11-02T15:25:00.002-04:00

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.

Giggles LaRue

2010-10-22T09:20:00.002-04:00

Rescued

2010-10-13T23:34:00.001-04:00

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

I Don't Want to Talk About It

2010-10-12T21:23:00.003-04:00

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.

For Nana

2010-10-07T11:48:00.004-04:00

Summer Pictures

2010-10-04T14:45:00.004-04:00

I love these pictures of E, taken in early July.

Happiest Place on Earth (if you're 7)

2010-10-02T21:59:00.002-04:00

We went to Disney World last weekend for a much deserved break. We all had a good time, especially M whose interest in Princesses has been slightly revived. It could have been something in the air, though, that exacerbated the natural acquisition skills of a seven year-old when confronted with sparkly items. M desperately wanted high heel shoes and the first purchase she made was of Cinderella's glass slippers, which were worn everywhere we'd let her (mainly our hotel room).

We stayed at the Bay Lake Tower at the Contemporary which is part of Disney's "innovative vacation ownership, blah, blah, timeshare, blah, blah." It was nice, especially since we had a kitchenette with microwave, toaster, & refrigerator. We had groceries delivered (awesome!) and it worked out nicely. I was really glad we stayed on-site because the sheer logistics of transporting us back and forth, the stamina needed (from all of us), and the sweltering humidity would have crushed my spirit by day 2. As it was, we enjoyed returning to the hotel and swimming every day. We made it to Downtown Disney and the Lego Store (fabulous!) and saw most of the Magic Kingdom.

More photos to come (when the ridiculously expensive Disney photos get here).

31 for 21, Year 2

2010-10-02T21:06:00.004-04:00

Yep. Already behind the posting schedule for this year's 31 for 21. I really enjoyed doing it last year and will give it my best again this year.

Some update about Miss E:

We're working through her transition stuff for preschool beginning in January. I have to say, it's been a bit of a pain. The Education Services Center social worker that is arranging all the meetings and evaluation only works part time. So I received a call from our EI specialist who said, oh the at-home is XXX day/time and the multifactor eval is XX day/time. Without even consulting whether it was actually convenient. I questioned having an eval, which forms the basis for E's IEP meeting, on the 2nd of December with the IEP meeting to be a couple weeks later (you know during the last week before the holidays or over the holidays) because I don't think it's going to be enough time, nor am I going to give up our break time to schedule meetings that they could adjust. It's not the school district, so I'm not concerned if I'm 'THAT' parent. And even if I become THAT parent, so be it.
E had all her testing from her therapists. For OT, she even moved from the 2nd percentile up to the 5th in skills! Her OT said that it was unusual for kids to move up, but we'll take it. OT is E's strongest skill and even though she's delayed, she's always had good fine motor skills. In PT, we're working on jumping, kicking, stepping over stuff (E doesn't always navigate over obstacles) and riding a bike! In speech, she still has no words, but 50+ signs (Thanks to Signing Time). I swear she adds 2 - 3 signs a week. It's hard to keep up.
E has become a real stink bug. To my recollection, she's a total 2 year old, defiant, stubborn, selective hearing, etc. She won't eat certain foods she loved, signs for ice cream all the time, will turn into a noodle if you pick her up to remove her from a situation. Some days it's funny, but others it's incredibly exasperating. She's also vocalizing her demands (no words, just grunts and squawks) so that's fun (**rolls eyes**)
She's eating with a spoon and doing a pretty good job most of the time. Yesterday, though, she did spill yogurt all down her, but I think it was her way of not having to eat it because her throat is still a little sore.
She has a sore throat because she had her adenoids out, turbinates shrunk, and a tube put in her right ear (because the weenie who did them in December didn't get it seated and, needless to say, we no longer see him for that and other issues). Hopefully, this will help her with the constant fluid in her hear which causes mild hearing loss. While she was under, they also did a BAER test, which came back perfect (e.g., no neurological hearing loss).

More about Down Syndrome (October is DS awareness month and the motivator behind 31 for 21), E, M, Big Daddy and life as we go along.

Amen, Sister

2010-09-01T21:43:00.001-04:00

Read this from Margaret & Helen.

State of Grace

2010-08-02T19:42:00.008-04:00

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.

After the Big Girl Haircut (Plus Tiara)

2010-06-05T15:49:00.000-04:00

Before the Big Girl Haircut

2010-06-05T15:48:00.000-04:00

In the Judging

2010-05-29T21:39:00.005-04:00

[NOTE: please read to the end for various notes/caveats about this topic. If you chose to comment, please do so nicely.]

Last week, I had an interesting exchange in a meeting I was having. During the course of the conversation, I shared that I had a child with Down Syndrome, but not the birth defect that my organization represents. Somehow, it ends up that the person I was meeting with said something along the lines of how good it was that I made the right decision to have our E because life was sacred.

I replied that yes, I (we, 'cause The Man was in agreement) felt we made the right decision for us given the circumstances, but that I'd defend anyone's right to terminate a pregnancy for any reason. The person said that I was more forgiving or tolerant (something like that) than she was and that she felt the same way once, but not any longer. Life was sacred.

I hate these sanctimonious statements from people who profess they are of faith. Who blindly follow the biggest and shiniest church and don't work to truly have a godly life. How is it that I (who would be charitably called an agnostic and most likely labeled a raging atheist) know that in the Christian tradition that He loved the sinners (even washed their feet!) and that people should not cast stones? How is it that I (godless heathen that I am) can find compassion for the women who have terminated/aborted a pregnancy, but those who follow Jesus can't?

Here's what I know from personal observation and experience. The women that I know who voluntarily ended their pregnancy did so because of a combination of reasons. That in the end reasoning, the weighing of options, and probably against their deepest hearts desire, the choice to abort was more appealing than whatever future they envisioned. Stop and think about that for a minute. Think about the circumstances that would make abortion more appealing than having a child. Can you imagine it? If you can't, then you should be grateful because for many women, it's their reality.

I was lucky in that my dr., when giving us the prenatal diagnosis of Down Syndrome, gave us facts and information both about raising a child (she had another patient with a child with DS) as well as what would happen (e.g., the process) if we chose to terminate. Her (and her staff's) relief was visibly palpable when I saw her at my next appointment and she said how happy she was to not to have to do the procedure. My experience, though, is certainly not the norm. In fact, it's an outlier. I can easily find ten women with prenatal diagnoses whose doctor told them to terminate. Trusted medical professional telling you to terminate after giving you news about something you know nothing about and have only the vaguest idea about (and that probably fairly negative). It's no wonder that the termination rate is around 90% for pregnancies with a prenatal diagnosis of Down Syndrome. I'd assume that's also true for other birth defects/conditions.

Having had the news before and knowing that for a few hours termination was an option, I can tell you, it's a no win situation. End the pregnancy because of the birth defect and have to live with that choice (especially since it was a planned pregnancy, which is probably also true for many of the 90% figure mentioned above) or live with the child with the condition. In those moments, when you're considering it, the condition (Trisomy 18, Down Syndrome, Fragile X, Spina Bifida, etc.) becomes all, not the child. Clearly, for many (90%) they don't get to the point where the child becomes more than the condition before the "window" to safely terminate closes.

Can no one find compassion for women (and their husbands and families) facing these circumstances? Do you not understand that in these circumstances (especially if planned pregnancy) that these women live with their choice for the rest of their lives just as surely as they would have lived with their child?

I don't think it's a failure for a woman in the above circumstances to make a different choice than the one I (we) did. In fact, I'd rather a pregnancy be terminated than for the family to have an unwanted child. But yes, you say, what about these whores of Babylon who are getting knocked up and using abortions as birth control? Surely, they deserve our condemnation not our compassion.

Really? God personally told you this? Or are you so certain of your own personal righteousness that you can sit in judgment of others? You who have had the benefits of education, class, or race. You can't take the time to imagine what a life must be like to see abortion/termination as the viable solution - not the desired one, not the one that will bring a substantive change to their life's circumstances, but the one that let's them meet their basic functions. This flip side of this, which of course receives society's condemnation, is that women receiving public assistance who keep having kids to keep on welfare. Either way, the cycle is never broken - either there's condemnation for abortion which might give them a chance to move one, or they keep having children thereby receiving blame and derision for not changing their circumstances.

I will never know what my life would have been like if I (we) had chosen to terminate. In some ways, I think ours was the easier decision, in others it's probably harder. Either way, though, (and this is why it totally chaps me to hear supposedly Christian people judge on this) how does one know that this challenge/decision/fork-in-the-road wasn't planned by God? That in choosing abortion/termination, a woman is put on a path towards something that only improves her as a human being because of the experience/choice? In the parlance of the faithful, isn't God omnipresent and omnipotent? And doesn't He know the outcome, especially since He gave us free will? And doesn't God know what's in our heart of hearts? And shouldn't abortion/termination deserve our compassion, not our condemnation? And finally, don't we diminish our own blessings/gratitude when we judge others?

Notes/Caveats: I am not advocating in anyway shape or form that women with a prenatal diagnosis of anything (Down Syndrome, birth defects, chromosomal anomalies, etc.) should terminate their pregnancy. I will, however, defend any woman's right to abort/terminate/end her pregnancy through a medically safe procedure.

I am also not looking for a debate about God. I am happy to know people of deep and abiding faith. I also am dismayed to meet people who say they are of faith, yet don't seem to live a life in sync with the teachings that made up some of my childhood. I take umbrage with religion as an institution and the mindless acceptance of religious leaders who espouse hate and a lack of compassion. Perhaps my religious training is lacking, but I don't remember much of the hate language encapsulated in the teachings of the Bible.

First bike ride

2010-04-21T21:06:00.000-04:00

Pretty Girls in the Swings

2010-04-21T20:49:00.001-04:00

Book

2010-02-09T23:10:00.002-05:00

Tonight, I was putting E to sleep. Bottle, rocking, kissing of babies, etc. The usual, except I skipped reading because it was late. Now, true confession. We don't read much with E. Usually, the only reading is before bedtime because it's about the only time she's not moving. She's been looking at them, though, when she's in the pack 'n play while I'm showering and M will read to her while she's in there, so all is not lost. Anyway, I try to read a couple books. Lately, it's been The Very Hungry Catepillar, That's not my Lion!, and The Going to Bed Book. I always read The Going to Bed Book last.

Tonight, after her bottle, I turned her around on my lap to face me (like I always do) and asked for a kiss*. She gestured and looked intently at me, which usually means she's signing something and trying to communicate. I didn't get what she was signing, though, and tried to do our normal post-reading (albeit missing) routine. E wasn't having it. She kept signing (hands together at the base of her palms in a kind of V) until I realized that she was asking for her book (signed with little finger side of hand together and opening like a book)!

She asked to read! I don't know why it seems more than other stuff she asks for (food, juice, music, Signing Time, etc.), but it is. My baby is asking for reading! Woohoo!

*Must remember to a)write about her signing. It's awesome! and b) tell about the kissing (okay, licking really) game we now have.

Summing Up

2010-01-30T22:41:00.016-05:00

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

2009-12-27T20:17:00.006-05:00

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)

2009-11-21T14:06:00.007-05:00

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.

Giggles

2009-11-03T21:53:00.003-05:00

The End

2009-10-31T22:31:00.003-04:00

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

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!

Stay tuned for more in November!

Official 2009 Halloween Report

2009-10-31T21:48:00.010-04:00

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.

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!

Recent Conversations

2009-10-30T23:50:00.000-04:00

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.

Halloween Fun

2009-10-30T21:13:00.009-04:00

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,

And have a Parade

Finally,
To come home and smile pretty.

The End

What It Is, Part 246549841

2009-10-30T08:00:00.000-04:00

From another mom:

Non-offensive Language 101

H1N1, A Little History of Flu, Links

2009-10-29T21:52:00.004-04:00

[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:

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.

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.

In the Leaves

2009-10-29T20:22:00.002-04:00

School Picture

2009-10-29T13:00:00.000-04:00

Getting to the End of 31 for 21

2009-10-29T08:00:00.002-04:00

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.

Feet

2009-10-28T21:48:00.011-04:00

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.

On Compassion

2009-10-22T20:59:00.000-04:00

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

2009-10-22T16:00:00.004-04:00

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

2009-10-22T09:15:00.003-04:00

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

2009-10-21T20:20:00.002-04:00

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:

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.

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

Happy Anniversary.

YFB

Heresy

2009-10-19T20:35:00.003-04:00

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.

Fierce

2009-10-16T23:46:00.005-04:00

(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?

Brushfield Spots

2009-10-15T21:00:00.003-04:00

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.

Teachable Moment

2009-10-14T23:59:00.000-04:00

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.

Creative

2009-10-13T23:41:00.006-04:00

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.

Monday (Last)

2009-10-12T20:27:00.004-04:00

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:

Sunday

2009-10-12T20:00:00.003-04:00

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

2009-10-12T19:39:00.006-04:00

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.

A Recent Conversation

2009-10-09T21:40:00.000-04:00

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?

Language

2009-10-08T11:47:00.008-04:00

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!

Physical Therapy

2009-10-07T14:00:00.001-04:00

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 and 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

2009-10-07T12:51:00.002-04:00

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.

Party Cat Central

2009-10-05T22:28:00.003-04:00

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.

Our First Grader

2009-10-04T20:02:00.008-04:00

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!

Summer Fun

2009-10-03T20:27:00.008-04:00

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.

Laundry

2009-10-03T20:04:00.006-04:00

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?

31 for 21

2009-10-03T19:54:00.007-04:00

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.

Awareness

2009-09-30T22:30:00.004-04:00

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.

The Week in Car Conversations

2009-07-19T13:12:00.004-04:00

Car Conversations are the best. These both occurred between our house and the daycare where the girls attend (all of a couple miles):

Monday, July 13
Me: [something about how tall the corn is]
M: [asked something about agriculture]
Me: Well, we could ask Uncle Jack about it next time we see him.
M: Or Cousin Timmy.
Me: Yes, we could ask him too.
M: Does Timmy wear a farmer's hat?
Me: What do you mean a farmer's hat?
M: You know, a straw hat.
Me: I don't think so, I think he just wears baseball caps.

********************************
Friday, July 17
[backing out of the house, turning off the NPR newscast before I have to explain various issues in the world]
M: What is that?
Me: It's the news, honey.
M: What is it saying?
Me: Just the bad stuff that people do sometimes. I don't want to listen to it this morning.
M: Did they hurt the President?
Me: No, he's fine. It's other stuff in the world.
M: [long pause] Before going to sleep, I say the Pledge of Allegiance.
Me: Excellent. What else do you think about before going to sleep?
M: I think about God.
Me: What do you think about God?
M: I think he's one of the best people to take care of us.
Me: Okay.
[conversation continued on why people believe in different God, why people hurt or are mean to people who don't believe in the same God, what girl gods were called, etc. You know, things one can totally address in the 5 minute commute with a six year old]
Finally...
Me: Well, honey, things about God are kind of complex.
M: What's complex?

Character

2009-07-13T10:00:00.004-04:00

A recent sticky note that I found with the following:
1. $1 to E
2. Pot of gold - lost & found

Translated (must have been in March of this year):
1. In Big Daddy's family, there's a tendency to give money as well as gifts. Uncle E always slips the kids a buck or two; and for various minor holidays (Easter, Halloween, etc.) there's usually a card and a small or medium bill. For E's birthday, M and I had picked out a card from M and as I was having her sign it and get it ready for E's party (held in March this year), M raced back to her room to get something out of the cup that holds her spending money. She comes back with a dollar to put in E's card, because that's what you do.

2. At school, we usually received a calendar of various types of activities. Parents were encouraged to do 2 - 3 a week, then turn it in at the end of the month with comments from the kid and the adult about what they liked, etc. One of the activities asked the student to tell what they would do if they found a pot of gold; so one morning as we were working through some of the activities, I asked M what she would do. She said, "turn it into lost and found."

Is it any wonder that I love this kid so?

Mysterious

2009-07-11T14:59:00.002-04:00

7/8/09

M: Mom, come here. There's something mysterious in my window.

Me: Hmm, mysterious in your window? Let's see!

Enters M's room and hears the music that's coming from neighbors who live behind through M's open window. I told her that the neighbors were playing music and that we could hear it, kind of like when Big Daddy plays music when he's cleaning the garage. Her tone, though, throughout was of awe that there's was fun music outside.

Literacy

2009-07-07T10:00:00.002-04:00

This year, M learned to read in school.

It's amazing to me, watching M learn to read and helping out at the end of school for a few week, that any child learns to read. English is a bitch of a language. When we're reading together, it's a constant struggle....

Me: No honey, this time the "i" sounds like ice cream, not kitten.

I can see that M gets frustrated and I can't always blame her. What's really funny about it, though, is that all the kids I read with at her school and in helping her, the kids stumble on what is seemingly the easiest, and most common words, like it, is, in, and sail through sometimes and elephant. I think it's because is, it, and in "look" alike (word recognition) and they have to really stop and think about the sounds, while elephant and sometimes don't "look" like other words they're using at this point.

What's also been interesting is that, despite Big Daddy and I being huge readers and having read to M since before her birth, she really doesn't want to read by herself. I think that is due to a) she doesn't like to do things that she doesn't do well (hmm....apple falling from tree?) and b) she gets our (Big Daddy & my) undivided attention when we read together. Truth be told, I love snuggling up with her and reading together.

In the interest of practice, though, we have a deal this summer to read for at least 10 minutes and do some workbook pages in exchange for time on the computer to play with the god-forsaken Webkinz that we caved and bought her. We include her reading to Little Peeps, which, I have to say, is one of the cutest things ever. Peeps is reading and Little Peeps is rolling all over her to get closer. It's hard not to eat them both up in their cuteness.

Recently

2009-07-05T21:19:00.002-04:00

While eating breakfast (7/2/09):

M: Mom, who killed God?

Me: [??? scrambling widely to figure out where this is coming from*] What do you mean?

M: Who killed God? Why did he die?

Me: You mean Jesus?

M: Yes

Me: Long, explanation about God, Jesus His Son, Ancient Times, Concepts of Ancient Justice Systems... And when Jesus lived, they didn't have jails so they punished people other ways.

M: Like what?

Me: Well, they tied them up to a tree like they did Jesus [shows small representation with pencils and pens.] You know what else they did?

M: What?

Me: Well, if you stole something, they'd cut your hand off.

M: Why?

Me: Because if you don't have a hand then how would you take care of yourself? You would have to have someone take care of you, and who would want to take care of a thief?

M: Other theives.

Me: [internally - crap, foiled again] Of course.

***************************************
A short time later that same morning (have I ever mentioned M's curiosity?)

M: What happens to the water soldiers when blah, blah?

Me: You mean the Coast Guard guys?

M: Yes.

*Note that I did actually try to explain to a six-year old the complexities of Creation, God, Jesus, the killing of Jesus, and Ancient History. The more I tried to explain it to someone with a black and white view of the world (nuance and subtlety still lacking, although she's pretty good at sarcasm, go figure :-) ) and it seems totally insane.

The War on Ignorance

2009-06-27T09:00:00.003-04:00

In February, our Physical Therapist (PT) put E in a walker. We'd been working on progressing through various gross motor milestones and it was time to begin working upright.

While filming her on my camera phone, I thought nothing of the fact that she was in a walker or uses an assitance device. Where before having E, I would have looked at a child and thought something pitying ("oh, how sad") and some gratitude that it wasn't my child. What an ass I now realize I was (okay, still am sometimes), because I didn't feel pity for my child for using a walker. I cheered and laughed and was so excited to see her have the use of equipment that would help her. I was grateful, so grateful for people who think about how to provide therapy and therapeutic equipment for kids (and adults).

I felt rather proud of myself that I can realize the juxtaposition of these ideas. That I realize that people might view the video above and feel sadness or pity towards my child; and I'm a little smug knowing that they are the ones to be pitied because of their blinders (you know, the ones I used to wear, or so I thought).

Now, I should digress and let you know that we have a standing PT appointment on Tuesday. Generally, we see familiar faces of other kids who are seeing other therapists (speech, PT, occupational). There's a kind of protocol of smile and acknowledge, but no one really talks about the various conditions/circumstances that bring kids to the center.

There's a baby girl (probably 9 months old) who has been coming in with her dad. I'm not sure what her circumstances are, but she seems to have some physical limitations and I have yet to really see her alert. However, her dad (and sometimes her mom) are there every week.

At Tuesday's meeting, we worked on walking in the walker (now with no seat), climbing stairs (E loves!) and the treadmill. The room we were in, though, had other various equipment, but mostly the kind of wheelchairs that provide full body support. We carried on, trying to give them privacy while also working on our issues (the room is the one with the stairs equipment). As it transpired, though, they were putting the little girl in one of the wheel chairs.

Despite what I know, I still had that moment of sadness tinged with pity. I would like to know more about her and her family (the questions I would ask, though, may not be the obvious ones now....that's for another post), but the whole privacy thing (and HIPAA) prevent it; not to mention that we're there to work on E and not socialize. Anyway....the point is, I had that moment of pity coupled with gratitude that their circumstances seemed, to me at least, to be harder than mine. I was grateful that our little E was not being fitted for a wheelchair.

Then, as we were moving to the room where the treadmill was, I saw the dad taking pictures of his little girl in her wheelchair; and I knew that his only thought was that this piece of equipment was going to make his daughter's life better in some way.

Findings

2009-06-25T23:05:00.002-04:00

Me: Why is there a pile of ripped up tissues under your bed?

M: I wanted confetti for my guys [stuffed animals].

Progress

2009-06-25T09:00:00.002-04:00

February 3, 2009

June 23, 2009

Doesn't E look so much bigger with the piggies? Also, this video needs the Top Gun theme song playing in the background. That was the only thing I could think of when I was watching her in the harness.

The Girls I Love

2009-06-23T16:33:00.006-04:00

Making the Connection

2009-05-31T20:37:00.004-04:00

Yesterday, I was doing some work at the computer, Little Peeps was napping, Big Daddy was out in the garage cleaning out the attic and Big Peeps was playing in the front yard.

Big Daddy brought down the retired Barbie golf set that hadn't been received as enthusiastically as imagined. Because we don't have a ton of garage space, it was stored away. It's reappearance yesterday prompted some interest which was relayed to me when Big Daddy came in laughing and said:

"So I was telling M the names of the clubs and she pointed to the wedge and I said it was a wedge, the same for the putter, but then she told me she knew what the big one was called. When I asked her, she said it was the Beatermeyer."

This cracked us both up. Now, M does have a talent for labeling things (globe=world ball), but neither of us could figure out where Beatermeyer came from. Regardless, we thought it was a great name and Big Daddy has rechristened his retro driver to the Beatermeyer.

Today, M and I were at the table and she was looking at Ottoline and the Yellow Cat. We were chatting about Ottoline and her friend, Mr. Monroe, and various story elements when she said something about the furniture in the book. Now, this book is really, really clever. I can't imagine the time the author and illustrator, Chris Riddell, has put into this book. Part of the book, though, involves the furniture in the apartment where Ottoline lives. Furniture such as a Biedermeier chair, ottoman, rocker, etc. Riddell's drawings of each piece are stylized, simplistic, oversized images that dwarf Ottoline and Mr. Monroe.

So, while the driver isn't really a golf club of prodigious power; I do have a six year old who is correctly able to associate and label her equipment in proper stylistic periods.

First Socks

2009-05-30T22:10:00.005-04:00

Why knit socks when you can buy them cheaply?

Because it's a great feeling to wear them on your feet as you go through your day. Kind of like when you're wearing delicate, hand-washables under your everyday clothes.

These are the second pair that I've knit for myself. On the first pair (details to come), I made one too long and have to rip it out. On this one, the one on the left is a bit long, but I'm not ripping out because they were a toe-up construction. Details at Ravelry.

Typical Man

2009-05-12T07:45:00.000-04:00

Recent conversation:

M: how old do you think Santa is?

Me: I don't know. How old do you think he is?

M: [thinking...] 32

Me: Oh. Okay.

M: And I think that Mrs. Claus is 23.

While I May Suck at Blogging.....

2009-04-28T13:50:00.011-04:00

Clearly, I have it goin' on in the making girls department.

Hoping for Vegetarian Robbers

2009-02-09T19:45:00.003-05:00

or at least non-Cannibal ones.

Scene: Me, working to upload kids music for M to take on trip; Big Daddy, in kitchen (next room) getting dinner ready; M wandering between.

M (to Big Daddy): Did you know there are other states where there are robbers who kill people?

BD: Yes, there are.

A few minutes later, to me:

M: Mom, did you know there are robbers who sometimes kill people?

Me: Yes, honey, unfortunately that's true.

M: Why?

Me: I don't know.

M: I think robbers want to kill us for our meat.

Me: Okay.

M (returning to kitchen): Dad, do we have meat?

BD: What do you mean?

M: Like animals, do we have meat?

BD: Yes

M: Oh. I think robbers want to kill us for our meat.

BD: No, robbers usually want things, not meat.

M: No, they want our meat.

Sickened

2009-01-30T23:20:00.003-05:00

I'm so sick of politics, but I was so annoyed at the Republican's lock-step rejection of HR1, that I wrote the following to my Representative:

Dear Representative Latta,

I am heartily disappointed in you and your Republican colleagues' vote against the Economic Stimulus (HR1) Bill. While I appreciate that we may have difference of opinions on how to improve the economy, your listed reasons to vote down a bill that would help me and my community, seems more like a fit of pique than anything else. The NEA, census, etc. spending is part of the government doing business and, while it would be nice if government employees could drive their car for another year, a large automobile purchase could also help the struggling auto industry - something from which my family, neighbors, and the entire region would directly benefit.

Regardless of whether we agree that the funds are appropriately allocated in this bill seems a bit disingenuous when you were in support of the massive bailout of banks and financial institutions. While trying to use the "pork barrel spending" cry against HR1 was a nice try, it is shameful for you (and your Republican colleagues) to pretend that your previous support of the biggest trough for the free market ever was anything but pork barrel spending. Given that we now know that those recipients gave themselves bailouts, planes, and retreats, it's disgusting that you voted against a bill because there were monies to ensure an accurate representation of the population (census), to support national arts programs, and for capital improvements? Really?

People are more discriminating than you think, and we know that a) there's a reasonable amount of pork that will occur, it's part of doing business in Washington; b) pork barrel spending is something in which you will be engaged as a way to ensure your continued re-election, and c) is not the one-way street that Republicans like to tout. People are able to distinguish between pork handed out as routine business, and that done to line pockets of friends and donors. Your (and your Republican colleagues') vote for the banks and financial institutions and against HR1 certainly seems like the latter.

I am repulsed by the Republicans' position on HR1, not only because of the hypocrisy of their (your) support of the first bailout, but also because I find a lock-step approach to politics to be one that benefits the politician and not the constituents. Obviously, I am a Democrat, but I believe your position hurts those of us who you represent, and given that the Republicans are in the minority and that your plan has no change of succeeding into law, your vote against HR1 may hurt you most of all.

I hope you will represent all your constituents in Washington and break away from the petulant, group-think that seems to be happening among Republicans.

Sincerely,
JMO

I'd like to rant and rant more, but it's late, I was due in bed an hour ago, and little E has been sick and not sleeping.
Hmmmm, perhaps sleep deprivation is driving the political rant.

My Girls

2009-01-22T23:17:00.002-05:00

Because it still makes me sad to see Pooka's face. We miss her. These bright, shining faces, though....how can you not smile?

Tears

2009-01-20T15:14:00.009-05:00

Of Sorrow and Grief

Bailey Jane
June 25, 1996 - January 15, 2009

Of Amazement, Humility, and Gratitude

The hope was for 5,000 scarves to give to the 2009 World Winter Special Olympics Games (February 6 - 13 in Boise, ID). Any extras would be given to volunteer workers and dignitaries. Word on the street is that over 26 ,000 (and maybe more) were received. My three seem very humble, but it proves small things add up to make a big statement.

Of Joy, Hope, and Excitement

I'm so happy to see this day while still young. I can't wait to see what barriers will be broken by a man of mixed race as President. I am encouraged and hopeful about the future, despite the bleakness with which the prior administration tried to grind into the populace.

Kissing Santa

2008-12-30T12:20:00.005-05:00

Today, while listening to I Saw Mommy Kissing Santa:

Me: What do you think Daddy would do if he saw me kissing Santa?

M: Probably kiss him too.

The Girls with Oscar the Octopus

2008-12-11T14:10:00.003-05:00

While there are some noted physical distinctions (e.g., blonde vs. brunette, visible eyebrows vs. not so much, blue vs. brown eyes, upper teeth vs. no, and one slightly flatter nose bridge) these girls of mine look a lot alike. When I took the picture with E, I immediately thought about this picture with M. I don't mean to brag, but these are some cute girls. :-)

Cute Girls

2008-11-10T00:04:00.006-05:00

In the leaves.

Laughing with the Octopus.

O

Bananas!

Pretty Ballerina

I'm Sleeping With the Bassist

2008-09-30T14:15:00.013-04:00

I don't know what it is, but when I talk about Big Daddy's band, it makes me happy to know that he's mine. On a rare night out in September, I went to see The Nu-Tones for their album release party. I just wanted to tell everyone that the bassist? He's mine*. And not only was he in the band, but he wrote what I think is their best song - Trendless Soul (#5 on the CD). And, despite being cooler than the other side of the pillow, he's a wonderful husband and great daddy. He's what you call - good people.

I've linked to their website on my sidebar. If you want to hear clips from their album, you can look them up on CD Baby or (deep breath) iTunes (search for Presenting the Nu-Tones). Yep, he (okay his band) is on iTunes. How's that for cool?

So check them out, and if you're in the area, they're playing this weekend**. Look all you like, but the Bassist? He's mine.

*mine in a '50s sort of way, not creepy stalker
**This was originally published, but somehow went back to draft mode. For their schedule, check out the Nu-Tones Website

Newsletter:July and August 2008 - M Edition

2008-09-28T21:51:00.000-04:00

My Beautiful M,
I've struggled with what to write about our summer and have started this post many times in my head, only to be exhausted by the time I have uninterrupted computer time. Also, July and August seemed like such a slog at times that it seems there's little good things to say. Things are smoothing out, though, and I'd like to be sure to accurately recap our lives together, so here goes the good and the ugly.

As I said, July and August were long months of arguing, negotiating, disciplining, having tantrums, etc. We took you out of daycare early in July because you were going to miss two weeks of it (one for Safety City where you learned the Fire Song, and one for vacation) and then it was a few short weeks until school. I, stupidly, had romanticized this time as being one of endless fun and adventure - a last hurrah before you started Kindergarten. It didn't quite turn out like I'd intended, but I think that it's been a good lesson for both of us. And lest you think this was a horrible period or that, we did have some really great days that full of fun, laughter, joy, and silliness.

Our Battles, if you will, come because, at 5, you think you're ready for everything; while I, at almost 40, know that you're still my baby, also, I've been 5 too, so you're attempts to pull one over on dad and I have failed miserably. For instance, one day you were tasked with cleaning your room and blithely assured me that it wasn't going to take any time. I verified this with you because I knew how much of your stuff is squirreled away in various places in your room. Given this was not a normal, just pick up the walk spaces area of your room, I was dubious. Sure enough, when I went in and started checking, I looked under your bed. Lo and behold! Most of the mess in your room magically transported itself under the bed. Busted! Little did I tell you that I am a past master of the under-the-bed-hiding trick.

You want so much to be a grown up. Once, during an argument I told you that you were smart, but that because Mommy is older and has lived longer, that I am smarter.* You came back with, "but I'm a Mom, too!" In the moment, this is phenomenally frustrating, but also so poignant. Your heart is so big and you love your dolls so much, that it's inconceivable to you that you're not their mom in the way I am yours. I have to take heart, too, that some (not all) of your behavior is your attempt to be me, which if you were an adult parent, would make me proud. However, as you're only 5, I will stay as the Mommy if you please.

This summer, we went on vacation to Mackinac Island and Traverse City to see family. You wanted to spend time with anyone other than your parents, blithely going off with the Kids Program on Mackinac and playing with your older cousins (D, D, and M). Since we've been home, there have been numerous conversations about how we wished D & M lived closer and plaintive queries as to when we'd see them again. We've also had endless discussions about Hannah Montana (who we don't watch) because D likes her. Your conversations usually goes like this:

M: I love Hannah Montana
Me: Really, why?
M: Because D does.

I've tried to explain that there is nothing inherently great about Miley Cyrus/Hannah Montana, but because D loves her; so do you.

In August, we were able to take one of our girls-only trips to Mackinac Island. This time, Sissy went with us and we stayed with Nana. Last year, you and I went three times (twice together and once with dad), so this was our first one with Sissy. We had such a good time, having chocolate shakes at the Jockey Club, going to Turtle Park, helping drive the taxi on the way to Nana's, playing chase at the playground (where I hurt my ankle), going really fast on the way to the docks, missing dad. It was questionable whether we'd go since we'd been arguing, but I didn't want to miss out on our trips. I'm so glad we went. It reminded me how much fun we have together when I relax.

One thing that was different for both of our trips was that you didn't want to watch DVDs the entire way. Instead, especially when you, Sissy and I went, you wanted to talk; and so we did for about half of the way. You are endlessly curious and we discussed Coast Guard cutters, freighters, etc. which was very taxing at times because you ask very specific and detailed questions to which Mommy doesn't always know the answer. I try my best, though, and what I don't know, we try to ask Daddy, or someone else.

Starting kindergarten, I think, has really helped give us both some needed breathing space. I wrote a separate p ost about your first day, but it bears saying here, that despite all our challenges in the past few weeks, I missed you all day. I worked in the kitchen and kept looking out at the water tower and wondering what you were doing and how it was going. The hug you gave me when I saw you (I met you on the way home) was more because you had had so much fun than just to see me (although I know you were happy to see me too). You positively glowed with excitement. Although I knew you'd love Kindergarten, it was so good to see you again.

As I wrote earlier, we had some pretty hard days, but they seem to be smoothing out. You still have days where you don't listen and I have days where I ride you on everything, but I think we're learning how to better coexist. I'm trying to spend more one-on-one time with you and I think it helps both of us. In caring for E, I've missed you so much. I am greedy and want all your infancy and toddlerhood back, but I would also miss who you are now. It's one of the major downfalls of parenthood - that the more I fall in love with you at various times, my heart is breaking for what came before. Sometimes, I can't wait until you are a mother so that you know how completely I love you and so that we can talk about what it means to be a mother, woman, etc.this. Of course, I'll be falling in love with you and eagerly awaiting to see who you'd next become, which only proves that this process will be for my lifetime and that figuring out how to live with one another now is so worth it.

I love you.
Mom

Big Girl on Campus

2008-09-28T21:13:00.016-04:00

8/22/08

Once Upon A Time,

There was a beautiful baby

Who grew up in the space of her mama's heartbeat.

The next thing her mama knew,

She was the Big Girl on Campus* and I missed her all day.

When she got home from her first day, I met her on the way home (Daddy picked her up). She got out of the car and ran over to me and hugged me tightly, not only because she was glad to see me, but also because she had had such a great day that hugging tightly was a way to release all the pent-up excitement. It mended my poor mama's heart.

*Note navy socks with mint/lime pants. She is sooooo her daddy's daughter.

Some Recent Conversations

2008-09-18T10:19:00.008-04:00

I've been recording various M comments on papers throughout the house and on my Notes function on my mobile. Here they are:

*****
8/19/08
In car, E is working over one of her toys that has the crinkle paper in it.

M: Are you giving the Pooh book the 411? (instead of the whatfor?)

*****
8/22/08

Eating breakfast with dad on first day of school:

M: I may not know everything, but that's okay because it's just the first day.

*****
8/26/08
M: Do you have any imaginary friends, Mom?

Me: You mean like Emily*?

M: Emily isn't imaginary, she's my sister.

*Emily is M's imaginary friend originally from "Merochia (Mer-row-sha)," then China, and now she's from CDC (Atlanta, where I used to go frequently).

*****
9/1/08
M: (afternoon after getting her hair cut) I think I look like a Caitlin.

Me: Okay (my go to response when I have nothing)

*****
Exact date uncertain, but around 1st week of Sept.

(on speaker phone)
Oma (T's mom): Is it [school] exciting?

M: Well..., it was, but I've been there a few days now so it's not as much.

*****
9/18/08
Walking to school, I'm carrying E forward facing in a wrap:

Me: Look E, we can see so many things when we're looking forward.

M: Yeah, look at all the trucks, vans and USAs.

Me: (Looking around for flags or other partiotic items) You mean SUVs?

M: Yes.

Infinity and Beyond

2008-09-14T20:46:00.002-04:00

M: I will love you for all time.

Me: I will love you for all time to infinity and beyond.

M: What's infinity?

Me: It means forever; there's no end to infinity.

M: Yeah, that's for me too.

The Fire Song (for Nana)

2008-09-14T08:00:00.000-04:00

When asked what to do if she was ever really on fire, M replied, "Sing the song."

Where's Sissy?

2008-09-13T11:15:00.000-04:00

Long, Flowing, Hair Be Gone

2008-09-13T10:13:00.006-04:00

on 8/29/08

Of course, after this, she went home, cut it in the front (so now its angled up to her chin) and tried blaming the dog for the big, clump of hair that she "found."

I Liked This

2008-09-09T11:07:00.004-04:00

no, not making any more, other than working on making them into good people. :-)

One of the Best Things I've Read

2008-09-08T12:52:00.002-04:00

Once again from The QC Report:

But if you’re not careful to carve out time there’s never a point where you look at all the things you know and see and have experienced and actually crop the image. There's no room to think this is important and this makes me who I am and this makes me happy in a way I can’t exactly explain.

If you have a few moments, check out the entire entry.

Family Pictures

2008-09-01T22:18:00.004-04:00

We've had pictures taken of E at 6 (okay really 7) months are are in my Flickr account. You can see them in the previews to the right, or, for just the set, visit -
http://www.flickr.com/photos/46634524@N00/sets/72157607060856949/

I'm woefully behind in posting and have monthly updates to write for both the girls. A little preview....learn about the accidents that M's imaginary friends have been having.