Wednesday, September 1, 2010

Monday, August 2, 2010

State of Grace

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

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

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

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

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

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

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

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

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

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

Book

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.)














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.

Sunday, December 27, 2009

Merry Vomitus

We have been felled.

E woke up last Saturday night vomiting after sleeping for a few hours. It's always fun to walk into a room smelling of barf watching your baby/toddler trying to figure out what's happened while simultaneously trying to get them clean and safe while keeping yourself relatively puke free and stripping soiled beds. Thanks heavens for Big Daddy. The throwing up portion of the evening lasted a few hours then subsided. I slept in her room and luckily, there was no high fever. After a couple days of not eating too well, she seems to have bounced back into her normal self.

I came down with the major pukes, though on Wednesday (12/23) night. This lasted through the next morning when major fevers started. Hello 103.5! Luckily, the high ones broke on Christmas Eve, but a low grade one lasted until yesterday (12/27). Unfortunately, ongoing nausea seems to be sticking around, but that's about it. This meant, though, no family activities on Christmas Eve or Christmas Day. Vomit is not a well appreciated gift.

M has been punky all week and actually woke up on Christmas Eve (technically Day as it was 1:30am ish) night and threw up on our bedroom and bathroom floor. After, we had her sleep in our bed while Big Daddy slept in hers. She was super chatty and excited still for Santa. Despite numerous threats that she needed to sleep, I think the most we both got was a solid two hours or so. The rest of the night was spent arguing about needing to go to sleep.

Christmas finally commenced (a real live American Girl!) with calls and Skyping to family who were carrying on without us. M, though, has been running a little low grade temp and been a little erratic in behavior and eating since. Thinking we were on the mend, plans were made to celebrate with local family today (Sunday, 12/27).

Nope. M still had a little temp and we didn't want to risk it with her 94 year old great grandma. Bitter calls made to once again cancel and disappointed girls (who said they were fine) moped around watching videos. There was perking up later in the day with the painting of the triple bunk bed made the day before by Big Daddy. The celebratory ice cream that was enjoyed, however, made a reappearance a couple hours later.

So, here I sit, tucked into a nest of pillows of blankets on M's bed while she is finally asleep. She tried water a little too soon (I tried to tell her that it would end badly. Unfortunately, this is my trait in her that things must be experienced to be believed.), so two more episodes later, she's finally out and we'll hope this is the last of it.

ETA: She woke up shortly after posting and threw up a little. Big Daddy held the bucket and I held hair. At the end of the episode, she asked for a washcloth for her face. I held the bucket while Big Daddy went to get one. I told her to wait a minute and she said, "I'm trying to stay calm."

ETA: Also, I should note that she was a great trooper, making the bucket for about 98% of episodes (the first one caught her a little, but not totally, unaware. Seriously, she was great. After posting, though, she was too hot she said, so after the "I'm trying to stay calm," incident, she got in the tub. Then, after returning to her bed, we had cool cloths on her head. She firmly rejected any ice chips, but liked a cool cloth. Ibuprofen was successful around 11:00 and sips of water commenced around 3:00 a.m. chasing a second dose of motrin. Popsicles and water have been the order of today, so we'll hope for a measured recovery that will allow for the twice-postponed Christmas to be successfully rescheduled.