Thursday, January 14, 2010


I am entering month six of pregnancy. I would say that while I am not rolling in joy over being pregnant (pregnancy is not a fun thing for me; babies are another story), I am perhaps a bit more patient this time. After three pregnancies, one learns that waiting is part of the deal. But it is a sweet waiting in many ways. Right now I am still small enough to be able to move comfortably. I can sit and relish the thumbing, rolling, and kicking that feels like a party in my womb. There is the delighted look on H's face when he rubs my belly and calls "Hey Blueberry!" and receives a hello kick. There is the pleasure of folding tiny clothes (are they really THAT small?) and laying them neatly into drawers....the only time they'll be that organized. This is a kind of waiting that has an end. I will not be pregnant forever. There will be an outcome. Hopefully a positive one.

But lately I've been another in kind of waiting. It is a waiting that come from parenting as well but it is a more painful kind of waiting. As many of you know Umberto's EEG came out with some abnormalities while he slept. His MRI was normal which was a relief to hear but the abnormal on the EEG uped his chances of having another seizure. Of course the office assured it was still a small chance, and as it too often the wont of medical offices didn't really give us much information. Essentially we were back in the same spot as before "Wait for another seizure."

Now this kind of waiting does not have moments of joy. It is a tense waiting filled with worry and anxiety. While pregnancy has those moments, they are balanced with a kind of anticipatory hope. This was not that kind of waiting. There was relief with each day that nothing happened but that relief was overpowered by an intense preoccupation with worrying about every little twitch and flicker.

Shortly after the New Year's Eve office visit, Horacio was hugging Umberto good night. He noticed that Umberto's right hand was thumbing against his back. H asked Umberto if he could stop the movement, and Umberto replied that he could not. With a little more questioning, we discovered that Umberto has had this happen a few times. It's caused him to drop things. With a little research we thought that he might be having simple partial seizures. After a frustrating week back and forth with the neurologists office, things seemed to return to normal. For a time, we thought "Okay these are doable. Umberto can live with this. It's not horribly impacting his quality of life." Mostly I think we were tired of the stress of carrying the burden of waiting. Of waking up to every thump, every squeak of the kids' bed. It wasn't that we didn't care or that we didn't worry but more that we just felt that we couldn't live constantly in scrutiny of Umberto. He didn't need that nor could we maintain that kind of intensity.

Yesterday, we drove a bit to satisfy my craving for beef and fries. Umberto fell asleep in the car. When we arrived at the restaurant, he was hard to wake up and seemed more groggy than normal. On the way in, I handed him his comic book. Right outside the door, he dropped it. I turned to him, and watched as he attempted to pick it up a couple of times only to drop it again and again. I'm ashamed to admit that I was getting annoyed thinking he was playing games but then H gave this worried look and I realized he was having an episode. I asked him if his hand was bothering him but he lied and said it was because he was cold. I told him to tell me the truth and he did. I could tell he was scared.

Later that night, we had our usual hectic bedtime. Lots of hyperness, and unwillingness to sleep. Finally they all settled down and I went to sleep. It was a restless night for both H and I. This is not unusual for me but it is for H. He was awake this time. I was coming to, woken by H getting out of bed. I didn't hear the fall but H did. He was up and in Umberto's room in second. He called to me, his voice edged a bit with panic. I rushed in to find Umberto on the floor, convulsing, breathing in grunts, eyes opened. "It's okay." I told H as calmly as I could. I felt anything but calm. I felt like I wanted to run away. Like I couldn't bear to see my child like this again, and underneath that feeling guilt that I didn't feel strong enough to watch this. But neither H nor I let fear rule out. We cleared away toys, made sure he was on his side, cushioned his head, timed the seizure and spoke to him. As before he came out within two minutes, was unconscious for a tiny bit of time, and then spoke to us. He fell asleep soon afterward but woke up to vomit. All the same as before. It was a little eery how much this situation was like the first time. It was even the same day and the same time. Same scenario. He had gotten up to change the DVD in the player. This time he told us a lot more. He said he dropped the DVD and couldn't pick up with either hand. After trying a couple of times, he said his hands started to feel funny, and then he fell onto the ground. So we know now that he gets an aura which is really a blessing as it makes the waiting a little more bearable for him. He also didn't seem as scared. Perhaps H and I remaining calm and matter-of-fact helped him to gain his own strength.

Now we're back in dealing with the efficiency of the neurology office. I am done with them on level. They don't ever answer the phone. When they finally called me back this morning, they told me to up his medication. Umberto wasn't on any medication and when I told the nurse this, she acted like it was my fault. She insisted on calling in a prescription even though I've mentioned several times that we really want to discuss this step with a Dr. I just spent a half hour driving to every CVS around us trying to get the prescription to no avail. The problem is that Umberto likes the Dr he meet the first time, and I really would like Umberto be able to talk to this man. It's now pretty clear that Umberto does have epilepsy, and I'd like to have a conversation with someone about what this means for Umberto and our family.

Thus this period of waiting is over. I suspect that it will never be easy to watch these episodes and as always with children, we enter into another phase of waiting. Medication? Alternative therapies? Will he outgrow it? Is is possible to figure out what kind of epilepsy he has? But when having children one signs up to wait. And of course we have signed up to advocate, gather knowledge and research. Perhaps this will make the waiting more bearable.

Friday, January 08, 2010

When Science Experiments Fail

On Wednesday night we conducted a "Chinese Clock" experiment. We poked a small hole into a plastic plate, and set it in a big pan of water. We were timing how it would take the plate to sink to recreate a Chinese water clock. The time it took to sink would give us a unit of time we could use to time things. Initially it appeared to not be working. The plate just floated and didn't sink. The kids were a bit bummed that nothing dramatic happened and went off to play, coming by to check the pan every so often. "What are we going to do if it doesn't work?" I asked H. He shrugged and we both laughed nervously. Almost an hour later, I walked by the pan to see that the plate had indeed sunk. I called the kids who came running and recorded the end time excitedly. While this post isn't about science experiments failing, it is about how what can be seen as failures are often not failures at all.

We took off the two weeks H had for vacation. I hadn't planned on any kind of winter break because the whole concept of a break sounds rather superfluous when homeschooling. But we don't have H around like we did when we both were in school so it made sense to just relax with family. But I was determined to start off right when H went back to work. I sat down on Sunday, made lesson plans complete with times, etc. We were going to do school and we were going to do it at certain times, etc.

Sunday was hectic. The furnace had broken down Saturday night so we had to wait around for a repairman before we could grocery shopping. It was too cold to do so much so my plans to make up suppers for the week didn't really pan out. By the time we had heat, been shopping, and eaten dinner, I was beat. But the kids weren't, and C and U managed to wake me up three times in about an hour and a half period. I ended up awake until 4 when I fell into a fitful sleep. Of course this meant I didn't get up until ten totally blowing my schedule.

As I sat there drinking my coffee and eating chocolate chip pancakes with Umberto, I sort of gave up in my head. I thought "What's the point? We're already two hours behind my plans." And then Umberto came over with a bunch of books so I read to him and he read to me. When that was done I thought we might as well do writing and before lunch we had done most of the work I planned for the day. When Camille got up at her usual late hour, I did her stuff.

As we sat and ate lunch, made plans to go to the library with H when he got out of work, I realized that I had to let go of the schedule. The point of homeschooling for us was to get out of the system. I believe that schooling are manifestations of cultural expectations. I'm not a big fan of "natural" learning. All learning, I'd argue, takes place in a cultural motif of various kinds. But I do think that once we are aware of these motifs that we can begin to choice new motifs. I'm also aware that this is a position I come to through being educated and in some cases privileged (but that's really a whole different post). My point is that I realized that I had decide to home school because I hate the educational system--what it represents and what it does to children. I didn't want to recreate school in our home. I wanted something different.

And I know that my kids learn whether they are doing something formal or not. They learn when they play creatively, when they hang out with friends, when they sit and listen to H and I debate stuff. Learning is never ending if you are open to the experiences that are at hand. And while I do believe they need guidance (again I'm not here to debate the merits of unschooling vs. schooling or whatever), I think that guidance doesn't always have to be hammered in through rote routine. In fact, I am still a rather undisciplined person despite years in formal education.

Our new plan is that we make up a list of things we want to accomplish for the week, and then we do them. It doesn't matter when or where. This takes a lot of pressure of us. Instead of just giving up, we give in. We do science experiments at nine at night...

And we learn that sometimes even those failures teach us something.

Saturday, January 02, 2010

A Personal "Why Health Care Matters."

This is by no means an intellectual post about health care. I promise no "facts," "figures" or "data" to back up any kind of argument. This is mostly a personal reflection on why the health care debacle has seemed especially poignant to me.

A couple of weeks ago, we got two bills in the mail. They were both from CMC's ER. Now let me clarify. We didn't go to the ER for routine care. My son had a random seizure. We didn't really have a choice but to bring him. In fact, we called 911, and the ambulance driver kindly told us ahead of time that we could drive him and save ourselves the transportation fee. These bills were for two separate services. One was for the actual visit and the other was for sending blood work results to Umberto's doctor. The first bill totaled a little over $2,000 and the second was for $700 and some change.

Now here's the services that we paid $2,700 for. At the ER, we encountered a lovely nurse who threatened Umberto (who had just had a seizure I remind you) with an anal thermometer because it was going to be so difficult to hold the thermometer in his mouth for him. She only relented after I started to get Umberto redressed, and told her we were leaving for another ER, and her superior came and told her to hold the thermometer in Umberto's mouth (note: this is a children's ER at a special children's hospital). Then a resident came in, and questioned us about what happened. She took Umberto's pulse, and listened to his chest. After a 15 minute wait, another Dr. came, and told us "Your son had a seizure." (no shit). Then after another 10 minute wait, the resident came in, and took blood. We were there for maybe 45 minutes. The second bill involved the transfer of a sheet of paper to the Dr.'s office. I guess they pay their photocopiers a lot of money.

I just looked at the bills, and thought "Wow. And we wonder why we have raising health care issues?" Later I got another bill with the information that I still owed $700 after my insurance took care of the rest.

Couple this with the bill that came from Umberto's MRI: $3, 550. And we don't know how much the EEG is going to cost but we do know that we had to pay $150 in copays for just the Drs visits.

I don't feel like we had a choice in these medical decisions. Umberto had to go to the ER. He had to have the MRI. He had to see the Dr.s he saw. I mean, it's not like we were worried about a cold. Our child was on the floor having convulsions. And if we didn't have insurance, Umberto wouldn't have been able to have the MRI or the EEG.

While we go through this, we are also fighting our insurance company concerning the birth center. All we want to know is how much they are going to cover. The woman H spoke to was totally unhelpful. Her suggestion was that we go to a hospital in our network. H explained to her that this was simply not an option. And she still didn't really direct us in how we are supposed to go about filing our claim. What's stunning about this is that it's much cheaper to give birth at the birth center. The OB we were seeing was charging us $1200 after insurance. This doesn't include the hospital fee. Add to this that the birth center I'm going to is covered by SC Medicaid. The state's willing to pay for it but not my private insurance? And we're worried about a government plan? Seriously?

What really pisses me off right now is that we pay over $600 a month for insurance. We rarely go to the Dr. because we're pretty healthy. But this year we've run into things where it's obviously vital for us to have insurance. Yet even with the insurance we're still paying huge amounts of money. Our copay for a regular office visit is $30. Our copay for a specialist is $60. We have an individual deductible of $1,200. That's for each of us. This is what insurance gets us.

There is so much wrong with this picture that it's hard to even begin to explain it. First, our government is about to make it illegal to not have health insurance. But they're not doing nearly enough to protect us for the insurance corps. There is no guarantee that my insurance might not get jacked in preparation for this change. And I can't just go without or I'll have to pay a penalty. I don't have a public option so that I can be GUARANTEED a fare rate. And if they don't jack my prenium, they're likely to jack my co payments and my deductibles (this is what our insurance did this year...and we're talking state employee insurance by the way). So I face the real possibility of paying more each month and with each visit. End result is that I'm going to have be dying before I go the Dr.'s.

Then there is the issue that comes from the birth scenario that I think is in indicative of a larger problem. In Europe, all normal births are attended by midwives: both in home and in hospitals. OBs are only called in in risky circumstances, and even in those circumstances C-sections and inductions are rare. But here in the US, midwives are demonized, out-lawed, and run out of business even when they are allowed to practice. C-sections are prevalent despite WHO studies which show that they are dangerous. We have one of the highest infant/maternity mortality rates in the "western nations." So why can't I get my insurance to cover a cheaper and healthier birth? Lobbying. The GYN/OB associations in this country is a powerful force. Just like the insurance lobbyists. Decisions are not made on what's best for the country but on pockets being lined with money. And it's not a simple party issue. Both parties do it. When Obama said he was getting 95% of what he wanted in health care, I really wanted to throw up. As I face a mountain of hospital bills, I am not sure I'm getting 95% of what I even need. And for the conservatives who are bemoaning having to pay for the poor, let me point out that both H and I work.

Friday, January 01, 2010

Cause it's New Year

I love these things at the end of the year, and I'm tired so I need to start off my blog a day thing with something a bit light. Thanks to Jess and Matt for the survey!

Year-End Survey

1. What did you do in 2009 that you'd never done before? Finished and defended a thesis.

2. Did you keep your new years' resolutions, and will you make more for next year? I honestly can't remember. I may have them somewhere on the blog....ummm so I guess that takes care of whether I kept them or not...I'll likely have some in my head.

3. Did anyone close to you give birth? No.

4. Did anyone close to you die? Yes.

5. What countries did you visit? No where this year.

6. What would you like to have in 2010 that you lacked in 2009? A new baby:P

7. What date from 2009 will remain etched upon your memory, and why? August 10 (the day we decide we really did want another child).

8. What was your biggest success? Finishing my thesis.

9. What was your biggest failure? Some personal stuff which involved some people that I wish I just had not gotten to know.

10. Did you suffer illness or injury? I had the flu, the cold, and a lingering sore throat, mat burns on my feet and elbows, a nasty bruise from falling off a chair, and numerous cuts and burns.

11. What was the best thing you bought? Probably my thinkpad.

12. Whose behavior merited celebration? H was his usual amazing hisself.

13. Whose behavior made you appalled and depressed? Me. I'm not proud of who I was for a short period earlier this year.

14. Where did most of your money go? Bills and lately Amelie's.

15. What did you get really, really, really excited about? Adding another beastie to our collection!

16. What song will always remind you of 2009? All of APTBS's Exploding Head....I openly admit to compulsively listening that album for a few months.

17. Compared to this time last year, are you a.happier or sadder? b. thinner or fatter? c. richer or poorer?
a. happier! b. totally fatter (blueberry related) c. same

18. What do you wish you'd done more of? Nothing that I can think of...

19. What do you wish you'd done less of? Facebooking.

20. How did you be spend Christmas? At home and then with a movie later in the evening.

21. Did you fall in love in 2009? Just with H...again.

22. What was your favorite TV program? Lost and the Wire.

23. Do you hate anyone now that you didn't hate this time last year? Oh yes.

24. What was the best book you read? I don't think anything really fired me up this year...oh wait, I really got into Batille.

25. What was your greatest musical discovery? Deerhunter, Okerville River (I knew them before but just discovered that I really really like them).

26. What did you want and get? Joy.

27. What did you want and not get? I don't like to spend time dwelling on wanting...

28. What was your favorite film of this year? The Wrestler

29. What did you do on your birthday? My mom brought me a cake and we ate cake with the family.

30. What one thing would have made your year immeasurably more satisfying? Having not gotten involved money wise with "friends." Actually having not meet those friends period. That and not even bothering to try school for the kids a second time.

31. How would you describe your personal fashion concept in 2009? Neopunk until I got pregnant and then it was all about the billowing tent.

32. What kept you sane? Not that I'm sane but H has worked on it.

33. Which celebrity/public figure did you fancy the most? Hugh Jackman

34. What political issue stirred you the most? Health care/gay marriage

35. Who did you miss? Everyone in Maine

36. Who was the best new person you met? Noone really. I didn't meet anyone who blew me away.

37. Tell us a valuable life lesson you learned in 2009? My insecurity doesn't just effect me.

38. Quote a song lyric that sums up your year:
These are my least favorite things to answer...I have no idea.