Tuesday, November 2, 2010


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.

Friday, October 22, 2010

Wednesday, October 13, 2010


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

Tuesday, October 12, 2010

I Don't Want to Talk About It

I'm struggling.

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

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

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

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

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

Thursday, October 7, 2010

Monday, October 4, 2010

Summer Pictures

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

Saturday, October 2, 2010

Happiest Place on Earth (if you're 7)

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

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.

Wednesday, September 1, 2010

Monday, August 2, 2010

State of Grace

The online dictionary gives this definition (#8) for Grace:
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.

Saturday, May 29, 2010

In the Judging

[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.

Tuesday, February 9, 2010


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.

Saturday, January 30, 2010

Summing Up

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

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

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

Holiday 2009 Pictures

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

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.