Prop H8 & DOMA

So next Tuesday the Supreme Court is going to hear arguments for and against Prop 8. On Wednesday they will do DOMA. Having grown up in California and lived there for my first 30 years I feel Californian to the core. It's probably because I live somewhere else now that being a Californian has quintupled in importance as part of my identity. I will never forget the 2008 election. It was my 30th birthday. My wife (at the time, fiancee) and I were living with my uncle and aunt in New Hampshire while house hunting 30 minutes away in Vermont. I had gotten Rock Band for my birthday and along with my two teenaged male cousins formed the band Stool. We had moved from California that summer thinking that prop 8 didn't stand a chance of passing. Thanks largely to the Mormon church, we were wrong. As it neared 1 a.m. and the results didn't look promising I went off and cried myself to sleep.

In the weeks before the election I did what I could from afar to persuade people to vote no on 8. Mostly this was through facebook. I lost a few friends, mostly people from high school. I still don't understand who they think they are to vote on my rights! What about the separation of church and state?! Not every church thinks we are an abomination, why the assumption that one can't be religious and gay?! I still have bitter feelings toward these people. One said to me, "Why can't we agree to disagree?" My response was that if that was the case then she would vote no on 8. She wouldn't have to get gay-married, I could do my thing; seemed like a win-win. Imposing her religion on me and my government does not much feel like "agreeing to disagree."

In the weeks after the election the anti-8 people rallied. Oh boy did they rally. I saw it all over the internet news, facebook, and television news. I viewed the photos my friends posted, protesting from the Oakland Mormon Church and downtown San Francisco, with such envy. I wanted to be a part of it. I wanted so badly to be a part of that history. So on Tuesday, if the Supreme Court decides in our favor (and it really helps that all they have to do is uphold the lower courts' rulings) and there is rallying/partying/celebrating in the streets I am going to be a part of it.

Adventures in G-tube

So my son has hyperinsulinism. He makes too much insulin, his blood sugar drops. We don't know why he makes too much insulin. Biopsies of his pancreas show that the cells are relatively normal. Or maybe he makes an ok amount of insulin, but the insulin receptors are being filled by some unknown antibody. This is the premise that we are working on. It explains why prednisone (and initially IVIG) is so successful at keeping Calvin's sugar up. Besides prednisone, we keep his sugar up with g-tube feedings. What a wonderful device the g-tube is. When we were in the hospital we overheard a father reasoning/arguing/cajoling/ begging/yelling at his (about) 8 year old daughter. He was saying that they could go home as soon as she took her medicine. She was in tears and this conversation went on for hours. It's nice to not have to have these arguments. Don't want to eat? Fine by me. We can skip the biting, chewing and swallowing and go straight to digestion. It's great to have increased control over my toddler's nutrition. Up until a few weeks ago we had been putting pediasure through the g-tube. It was pretty much the only thing we would bolus him with, in order to bring up his sugar. We had been thinking about his sugar (it's the number one thing that occupies my mind all the time anyway) and whether there could be some ingredient that either when added or avoided would help stabilize his sugar. Dawn, my brilliant and resourceful wife, considered how the pediasure was helping. It seemed that it was causing his sugar to spike, but perhaps not giving him a sustained lift. He would soon drop and we'd have to bolus again. So we thought we'd try doing food through the tube. Our first attempts involved about 10 ingredients, including corn starch. The thought was that corn starch is a long lasting carbohydrate that would give Calvin a sustained boost. It worked well at first, but after a day or two fared no better than the pediasure. So we considered the ingredients we were using. It turns out that the first ingredient in pediasure is high fructose corn syrup. So we've eliminated that from his diet, all corn products in fact. We've been at this for about 2 weeks. I don't know how well this is really working. Calvin just had a low in the 50's a couple hours ago, but before that number I was pretty happy with how this is going. His sugar doesn't go as high anymore, but doesn't go as low either. His graph stays flatter. He's mostly between 70 (lowish but not dangerous) and 100. Here's what's in the mixture: chickpeas, peanut butter, banana, peach, almond milk, agave nectar.

All day Friday I had been noticing that it was getting harder and harder to push the food mixture through the g-tube. Finally, around 11pm it was clogged and nothing was going through. This is terrible for us. Without the tube we have no access. If this didn't get fixed it was going to necessitate a late night trip to the ED. Trust me, late on a Friday night in the Albany Med emergency department is not where anyone wants to be. In addition to all the unpleasantness of being in the ED, I've never seen more prisoners in one place. Fortunately for us we did have an extra Mickey Button kit and with only a little bit of struggle Dawn was able to replace the clogged one with a new one. She is so capable and resourceful, it's one (two?) of the reasons I fell in love with her. It's been 4 days now and new g-tube is working out beautifully.

Living in 2013

Nostalgia for simpler times seems like a common theme amongst people I know. I totally understand it. It's easy to wax nostalgia for what seems like better days. We remember times when people took pride in their neighborhood schools and communities, when children could play freely outside and ride bikes around town. There is a Normal Rockwell-like quality to this nostalgia. Everything seemed simpler and safer. Sometimes I even succumb to this nostalgia. However, the rose colored lenses through which I view my childhood also blind me to how it "really was." Certainly people of color, sexual minorities, and women have more opportunity today than 60 years ago. While I long for a community where I can be highly involved, want to know and have good relationships with my neighbors, and frustrate easily over the complexities of living in the 21st century, I also know that I am much better off living in 2013 than I would have been in the 1950's & 1960's. 

First, In 1960 I probably wouldn't have lived past the age of 30 due to Crohn's and Crohn's complications. I am so grateful for the medical interventions that have allowed me to live a relatively normal life. Along those same lines I am grateful for the medical interventions that allow my son to be a pretty normal 2 year old. While his future is unknown, I do know that had he been born as little as 15 years earlier he would not have received the same treatment for his hyperinsulinism. I doubt that a diagnosis would have come so promptly and I'm sure that he would have cognitive deficits resulting from prolonged low blood sugar. 

Second, life keeps getting better for us homos. I don't even need to explain this. In 1960 homosexuality was considered a defect, an abomination, the cardinal sin. Of course there are still people who think this (only one in my very extended family), but they have become the minority. They are becoming more and more ashamed to voice these opinions out loud and when they do more straight allies are speaking up. Thank you for that. In 2013 my lesbian marriage is recognized in 9 states, plus D.C. and I am expecting very soon for Judge Vaughn Walker's ruling regarding 2008's prop 8 (boooo hissssss) to be upheld in the Supreme Court. Optimist that I am, I am convinced that gay marriage will be recognized in my home state of California once again. I think it will happen this year. My family has been incredibly supportive. I never even had to give time for them to adjust. They were supportive from the start and I'm not one of those obvious lesbians, although I've been working with a variety of hairstylists to try to fix this. In general, though, people don't know I'm a lesbian until I start talking about my wife, which usually happens before anyone voices any comments that give away their heteronormative assumptions. Back to my family...I love telling the story of how I came out to my grandmother. We sat on her stoop and I quickly cut to the point. Here is how our conversation went:

C: "Grandma, I'm gay."

G: "How do you know...how are you sure?"

C: "Well, I've dated both and I'm just know."

G: "Well yes, I suppose you do. That is an excellent point."

As I remember it that was the end of the conversation. Maybe she asked if I was dating anyone (I wasn't). It wasn't a problem and there just wasn't much more to say about it. The summer that I came out to her I came out to nearly all of my family. That was truly the end of my being in the closet. For the previous 3 years I had slowly been coming to terms with myself and telling people who I was closest to and thought would be the most supportive. As it turns out EVERYONE in my life was supportive. Many of my friends had figured it out before I did. My only regret is not coming out to my grandfather. He passed away the October before I told my grandmother. I thought we would have one more summer with him. If he had made it to that summer I would have had the conversation with both of them, as my younger, braver cousin did. I know he would have been supportive, there's not a doubt in my mind, and I wish he could have seen me come into myself and grow the confidence that comes with being able to truly be oneself. I miss him and think of him often. 

Hyperinsulinism

Some days feel unmanageable. Not that I can't get through the day. Getting through each day isn't a problem. It's the anxiety, the not knowing, the not knowing how long it's going to go on like this. So much anxiety and worry. My son, Calvin, one of the most adorable toddlers you will ever meet, has hyperinsulinism. It's extremely rare. There's only one hospital in the country that deals with his condition, Children's Hospital of Philadelphia, or CHOP. He overproduces insulin and that causes his blood sugar to drop. I check his blood sugar 7-10 times per day and give him bolus feeds through his g-tube 5 or 6 times per day. Needing to have so much equipment and having to do frequent checks has impacted our lives. We don't travel far from home. It takes me at least an hour to get ready to go anywhere. Before Calvin had his seizure I was contemplating going back to work, now I worry about Calvin's blood sugar and I won't even consider putting him in daycare. There are only a few people in my family who have enough know how to be able to take care of Calvin for more than a couple of hours. But like I was started out saying, taking care of Calvin is intense. I want it to get easier. His pancreas should mature and stop overproducing insulin if we can just wait for him to grow. How long will that be? Will it get easier when he can talk and communicate better with us? He's not talking yet. He has a speech delay. He is otherwise developmentally on target and similar to other 2 year olds. Will it get easier when he can take over some of the responsibility for his own care? Today was one of those days where I spent the day feeling like I can't wait for it to get easier. And then today my wife (Yes, I'm a lesbian. We'll talk about that in other posts.) reminded me that we had been planning to leave CHOP on a continuous dextrose pump. There were even more intense options and lengths that we were (and still are) willing to go to in order to save our son's pancreas. There are very few options for controlling Calvin's insulin production. Drug therapy didn't work. Removing nearly all of his pancreas was/is an option that we will try to avoid at all costs. Just trying to exhaust all possibilities we tried a blood product infusion and steroids and it has worked for us so far. However, steroids aren't without their cost. The long term effects of steroids are no good so the wife and I have been trying to wean him off of them. I think this is why his sugars have been lower lately and hence the increase in my anxiety and worry.