Two (or three) Little Hearts

We had a great trip last week to southern Illinois, for Thanksgiving with my extended family. Both my parents grew up in and around Carbondale, Carterville and Crainville. My folks knew each other in high school and got together and got married when my mom was 23/34 and my dad was 26/27. I was born in Denver, CO, but my folks moved away when I was two months old and I’ve lived in North Carolina since I was about 3, so that’s home. As kids we visited once or twice a year; that has decreased for me since college, but we re-established Thanksgiving visits last year. Simon had a blast with all his older (second) cousins, and there are a lot of boys among them. I depend on him coming home with a new host of new karate chops and items for his Christmas list. David and Chloe have a special affinity for one another; she just had her 2^nd birthday and on the two visits we made last year, Chloe was always chasing after David, with hugs and kisses.

Voting and Seeing

Without getting into another big political discussion, Matt and I are pleased with the outcome of the recent Presidential election. I did ask the question on Election Day, “will David be able to vote?” My instinct was, yes, but I was not sure. According to the North Carolina Board of Elections website: yes. There was the specific example of the residents of long-term care facilities, such as the J Iverson Riddle Developmental Center in Morganton, where Matt’s parents have both worked for 30+ years. Most of the residents of the Center are adults with what formerly would’ve been called Severe or Profound mental retardation, I suppose, and many also have multiple/serious other medical conditions are non-ambulatory and/or non-verbal. Long-story-short, a state institution, basically, for folks whose families can’t care for them in the community.

(I am so totally going to take only blurry black and white photos from now on)

(And I'm only going to dress him in overalls. How cute is this?) 

Some Other Stuff

This will be a pretty busy week for us - today is the Veterans' Day holiday with both kids at home and speech therapy this afternoon, tomorrow is back to school, Wednesday is David's yearly pediatric ophthalmologist checkup, Thursday is a sedated echocardiogram, and Friday he meets with his new CBRS/teacher. So yeah, busy.

The speech therapist and home-based teacher come here as part of David's Early Intervention, but we have to go to Hendersonville for the eye doc and Mission Hospital in Asheville for the echo. There is one pediatric ophthalmologist in this part of the state, and she been working with David since he was in the NICU. She's said before that David is nearsighted and has astigmatism (well, he is my son), but she didn't think he'll need glasses until he's closer to kindergarten. This echo is sedated because at his last one (in April?) he was 101% uncooperative with everything, and Dr. Aaron couldn't see anything he needed to see. It has to be done in the PICU at Mission, and we have to be there at 7:30 a.m. for an 8:30 a.m. procedure, which means we have to leave the house at 6:00. Whew. Simon will be spending Wednesday night at a friend's house (a mid-week sleepover, as you can imagine he and the friend are pretty excited) so Matt and I can both go. David will have to have an IV, which is always difficult, but that's about it as far as discomfort for him.

oh, and ...

I have finally succumbed and am on:  twitter.com  - @jack_msw
Not to sound like an old person  :)  but I don't really know too much about it and all the stuff you can do, yet. I just started using it last night for election-night news. Feel free to follow ...

November 6, Part One - Dis-encouraged and Dis-articulate

[ The "dis-encouraged" is included as a tribute to Nurse Lucy, someone I worked with at an earlier job. She regularly consulted me about spelling matters 
(hand-written progress notes at that time); in one note she used "disencouraged" 
and I gently suggested that "discouraged" might be better. Hi, Lucy. 

I know the opposite of the adjective articulate is inarticulate, not disarticulate. 
Disarticulate means "to become disjointed," which I think is appropriate to this content. Also I'm mostly familiar with it being used to describe someone cutting off fingers, arms, etc. of a person. 

This may be a good indication of my mood :) 

but also describes what I nearly did while pruning our hedges this weekend, so I'll use it. ]

Random … something

1. Trick-or-Treating the other night – after the “retarded” comment (see previous post) bummed me out for awhile, we had a pretty nice time. The main celebration: David got to walk a little bit! Last year we were nowhere near this point, so it was awesome. I was actually a little relieved when he sat down in protest, because he’s so short (even in a group of kids) I was worried he’d get stepped on.

              

(Keep reading)

November 6, Part II

There are a lot of those, what do you call them? Oh, right, feelings. There are a lot of feelings in this one. It is probably pretty difficult to read. And,

(b) On a “globalization of emotions” note – this has brought up other feelings of powerlessness, miscarriage-related. That’s not something I’ve talked about here before, I don’t believe. That first week in June when everything happened, I probably experienced every negative emotion ever felt by a human being. Fear anger sadness grief confusion everything. And the physical pain. Next to (or maybe even tied with) the grief, the inability to do anything to change the outcome was the worst. When I initially called the OB office when the bleeding first began, the nurse said to just wait and watch, but “You know, if your body is going to reject this pregnancy then it’s going to happen and there’s not really anything you can do about it.” That looks pretty harsh written out, but it was said with care and concern.

When we went to the ER at our local hospital that Saturday, we waited in the ER for two hours and while we were triaged we were never actually seen, and we finally left because it was about midnight. I cried in the parking lot outside, feeling I was not doing the right thing, not doing everything I could. But I knew in my heart that really, nothing could be done. I could’ve complained loudly until I was seen, then waited probably another 2 hours to have an ultrasound, all to be told what I already knew, deep down inside: the pregnancy was going to end and there was not a thing anyone could do about it. That was a horrible feeling (some tears as I write this) – to feel on the one hand that I was giving up on the baby, abandoning it (we didn’t know yet there had been two), and on the other hand knowing the truth (I did used to work in an OB clinic) that if it was over, it was over. …

Pregnancy, and especially miscarriage, are really private, solitary matters. You (the pregnant woman) are the only one who really knows the baby. The majority of miscarriages happen long before you ever feel the baby kick, perhaps before you even really see anything on the ultrasound. You listen to the doctors and your brain accepts that it’s not your fault, there was nothing you could have done, but you don’t really believe it. It’s your body, you are the only one who has control, and if you didn’t do something to cause it then there’s nothing you can do now, no behavior you can change, that will make it better. And there’s nothing you can do to make sure it doesn’t happen again. It’s awful.

Keep reading, please: 

(No, I haven't actually sent this yet. Too scared)

Dear Ms. Coulter,

“Because that would look retarded.”

These are among the first words I overheard after my little family and I arrived at a church-sponsored pizza party last night, for a pre-trick-or-treat supper. There were two teenage girls dressed in matching costumes, and one was ready to start getting candy while the other wanted to stay at the church a while longer. The first protested that she couldn’t go by herself because “that would look retarded,” without both halves of the matching outfits.

This is what I heard when she said it: “I can’t go out as one half of this pair, because that would be as stupid or stupider than something someone with an IQ below 70 would do.” Did I mention this happened as I was walking out of the church ahead of them, with my 2-year-old son David, who has Down syndrome, in my arms?

What I heard in your tweet is that President Obama's policies (and possibly the man himself) are so inane, so insipid, so worthless, that they are as bad or worse than those a mentally retarded person would come up with.

These teenage girls are probably what you were talking about last week in your interview with Piers Morgan last Friday, right? Giving these young ladies the benefit of the doubt, I will assume they were not (nor likely would they ever) purposefully saying something hurtful to a small child with a developmental disability. They were just being … teenage girls? Whose mother never told them when they were much younger, “don’t call someone retarded because it’s mean,” as mine did?