The thing about in-laws

I have difficult in-laws. My f-i-l is best described as an extreme narcissist with borderline personality tendencies. He demands that he always get his way. He is controlling and abusive. M-i-l is a passive enabler. My wife lives in constant conflict over how to handle them. She really has no desire to have her father in her life in any way, but does not feel the same way about her mother. About half a year ago wife began a conversation in which she made clear that she was not going to ignore the abuse that she suffered. She was no longer going to pretend that things that happened never happened. Knowing my f-i-l as I do and seeing patterns in human nature I can see that my in-laws try to displace their anger and negative feelings away from their daughter and direct it toward me. When children come out parents frequently blame the significant other for "making their child gay." It's easier to deal with their own emotions that way. This is exactly what the in-laws do, except that my wife was already out and had even been married before. Still, whatever negative emotions in-laws feel about not being able to control their daughter they take out on me.

I hear (mostly from my wife's sister) of nasty, mean things that my in-laws say about me and my family. I've written before about his "just the real family" comment that was clearly intended to exclude me. The most recent (and entirely false) information is that we bought our house from someone in my family and we were bullied into it. Nothing could be further from the truth. We bought our house from a couple of old dykes and if we had asked for advice from my family, I'm sure they would have told us not to buy a house or at least to wait a little longer, until we had more savings. F-i-l actually did a whole bunch of dicking us around right around the time that we were signing escrow. My family was nothing but helpful and supportive. The irony of hearing them call my family bullies when it is they who have performed the entirety of the bullying is entirely maddening.

It's a difficult thing to let my in-laws direct all their anger and frustration toward me. I don't like being their punching bag and letting shit slide isn't my style. I'm considering sending an email to m-i-l, but don't know what I am really trying to achieve.

Terrible Twos

Almost three months past his 2nd birthday it's clear that Mr. C has entered the terrible twos. He's defiant, screaming if he doesn't get to bring the toy he wants (sorry, dump truck is too big for the car) or go where he wants (it's usually to the sandbox out back, especially when I'm trying to keep him clean). If he was talking he would be saying "NO." He shakes his head and pouts, that is when not yelling or whining.

I've been thinking lately about how C's hyperinsulinism affects my parenting. A couple of times C has gotten himself so worked up that he vomited. We were lucky that when that happened his sugar didn't drop too much and we were able to bolus him soon after without further emesis. We try to keep him from vomiting at all costs. This means me being a huge pushover instead of the rule enforcer I was born to be. C gets to eat whatever he wants. Anything to keep the sugar up. Jelly beans for dinner? Why not. I've become experienced with the art of distraction. "Look, Calvin a SCHOOL BUS!" If not for hyperinsulinism I would let my child eat what I made for meals and healthy/occasional semi-healthy snacks. He could cry and scream all he wanted, but that wouldn't get the ipad in bed with him. I give in to most of his demands. I worry about how this will affect him.

Speaking of ipad...C has lots of fun toddler apps, but he's also figured out netflix. I'll put on Dinosaur Train or Bob the Builder, themes which C loves in other situations, but he frequently changes it to Barney. Dawn and I are both distressed by this. As much as I can't stand Barney (well actually, I have to admit to the tiniest of soft spots due to a Barney stripper at Beth Phillip's bachelorette party in 1997) he is still preferable to a room full of vomit and a midnight trip to the ER.

Poop on my hands

So far I have refrained from discussing B.M.s on the blog. Not anymore. When it comes to poop we have gotten pretty lucky. Calvin hasn't really had too many blowouts. He's never covered his stroller or car seat in feces. There's never been a huge accident in bed, aside from urine. I can't even remember Calvin ruining an outfit with poop. This is in stark contrast to stories I hear from other parents. One of my favorite baby poop stories is of my uncle trying to change my cousin's huge poopy diaper on the tray table on an airplane. Apparently the recirculated air bothered the Oakland Raiders that my uncle happened to be flying with.

As lucky as we've been with baby poo, when we began doing food boluses we noticed a change. There was suddenly a lot more of it and it was looser and wetter. Today was his worst yet. I first noticed it on the chair he was sitting in. Then on the back of his pjs. It was the kind of poop that necessitates a bath, the kind that lead to an extra load of laundry, half empty bags of trash being taken out, and cleaning of furniture. I picked him up under the arms and using all the strength I could muster, carried him up the stairs while still holding him as far away from my own body as possible. The gag reflex would have been activated for many. I measure how messy a b.m. is by how many wipes it takes to clean it up. An average poop for Mr. C is about a 4 wipe poop. I used 10 wipes on his body pre bath. I didn't count how many I used on the furniture. We are lucky it happened at home. If this poo had happened out in public...well, that's the kind of stuff that legends are made of.

To out or not?

I may not appear an obvious lesbian, but if you talk to me I will out myself within 5 minutes. It's usually because of the important role that my wife plays in my life. There are some instances, however, in which coming out just seems a lot more trouble than it's worth. These are always brief exchanges with strangers, who make assumptions. Today, for instance, at the post office a woman commenting on Calvin's size asked if my husband was a large man. I responded in the affirmative because the sperm donor is 6'2". I feel completely comfortable avoiding the truth in these situations. I'm not denying myself or ashamed of being gay, I just didn't feel like getting into it. The thing is that soon Calvin is going to start to understand. What is he going to think? Will he think I'm ashamed of our family? What message will he internalize by watching these interactions? The idea of having to explain our lives to everyone who makes a mistaken assumption is exhausting and intimidating, but I would never want Calvin to think for a second that I am anything other than 100% proud of us. On the flip side, I also want him to learn that he doesn't have to volunteer any information that he doesn't want to and that he shouldn't give out a lot of personal information to strangers. I hope that when the time comes I will know what to do and how to explain it to him.

C-scare

I've been waiting for weeks to write this blog entry. Sometimes it seems like my family can't catch a break. During Calvin's CHOP hospital stay, last fall, my Crohn's disease steadily made its presence more known. Even before the seizure I knew that I was within the window of time that I could expect to need a bowel resection. During the hospital stay I came to realize that the sooner the better. So I had the resection a month and a half after returning home. At the same time my wife discovered a malignant melanoma. She nearly canceled her dermatology appointment because of the difficulty of getting there when CHOP felt like our permanent residence. The dermatologist didn't think it was anything, but malignant it turned out to be. After having the area excised it was difficult waiting for the pathology report. Waiting really sucks, but it was good news. The edges were clean! It was stage one and hadn't spread.

Fast forward 6 months and a lymph node in her armpit is extremely swollen. She reported it being sore beforehand, but it seemed to have multiplied in size overnight. It was a couple weeks before she could be seen by student health and then another week before she could be seen by the surgeon. Waiting is miserable. For someone who already deals with enough anxiety in my life these few weeks were especially bad. Some of the signs should have been reassuring to us. Cancer generally doesn't get so big so fast and Dawn's labwork looked great. It is her family history, however, that is so frightening. Her mother is one of 5 girls, 4 of whom have had this particular type of cancer. Her youngest sister died from it. She had a melanoma removed from her leg and was told the edges were clean. Six months later a lymph node in her groin was noticeably swollen and shortly after that she passed. The similarities were frightening.

One week ago today we met Dawn's surgeon (I guess it's more accurage to say that I met her and she became reacquainted with Dawn, having not recognized her from doing anesthesia in her operating room). She was great, however, she wanted to put Dawn on the surgical schedule for the 22. That was a day short of 2 weeks from the appointment. If we were going to wait that long I thought I would lose my shit. I really did. Somehow Dawn got on the schedule for the next day. Surgery went well and the goofiest resident I have ever met came to tell me that "cyst-like fluid came out." I've never been so happy about a cyst before. I felt like so much anxiety lifted that immediately a 2 day headache set in. I wanted to share the good news immediately, but thought I should wait until we have official pathology reports. As of yesterday we have those reports. Good news, it was a benign cyst!

It feels hard to concentrate on this experience given the events of yesterday in Boston. I am so glad that my cousins are ok, but I've been reading about the Richard family. Father was running in the marathon, 8 year old son died from the blast, daughter lost a leg, and wife suffered a brain injury. I hurt for their family and so many others, but I realize my family has, in fact, caught a break.

Bully

Today I watched Bully. I wanted to see it in the theatre when it was first released, but with a toddler going out to the movies is something that just doesn't happen anymore. Going into it I was expecting to watch this documentary from a teacher and activist perspective. After all, I spent much of the 2011-2012 school year visiting Brattleboro schools, talking and exchanging emails with teachers about LGBT issues in school. Instead, I watched the movie as a parent. And I cried throughout, not just cried, I sobbed.

In one exchange our hero, Alex, is sitting in the office of an administrator who promises to do something about the bullying that he is experiencing on the bus. She asks him if he believes that she will do something. IT IS A LOADED QUESTION. She doesn't want to know what he really thinks. She prompts him with other questions until she gets the answer she wants. It's one of the worst examples of an administrator not listening to a student. As I watched the interaction I realized how commonplace conversations like this are. It made me realize how I can't wait for my kid to start talking, so I can listen.

A few weeks ago I wrote a post on a parenting forum defending public schools. As I watched Bully I wasn't at all surprised by actions and attitudes of the administrators, but saddened. I realized what conflicting and contradictory opinions I hold. On the one hand I absolutely know that everything this movie shows is only the tip of the iceberg. On the other, I believe in free public education. I believe that all children deserve a "free and appropriate" education. I believe that public schools are the places where neighborhoods coalesce, where children learn how to interact with people different from themselves, where communities unite. I'm still working out how to sit with these conflicting ideas.

In early 2010 I was substituting for a high school teacher. I was actually in the middle of a long term sub job at an elementary school, but being short subs that day I was pulled to the high school. Maybe it was for a reason. It just happened to be diversity day. Along with about 100 high school teachers and maybe 15 or so staff I watched a presentation that included a great deal of audience participation. The topic was bullying and the question was put to the students of how to stop it. Many of the students' comments echoed the sentiment that bullied children need to learn to stand up for themselves (this theme was echoed in the movie by a child's parent). It was nerve wracking, but I stood up in front of all these teenagers and adults, basically a stranger to everyone, and said the following:

Imagine an abused kid. Someone who's parents don't support them, don't tell them they love them, don't make them feel important. Someone who is basically taught that they are worthless from the people who are supposed to love them the most. Imagine the lessons that this kid has learned at home. Now imagine this kid out in the world. How are they supposed to stand up for themselves? It's easier to do when you believe that you are loved and important. What about someone who never learned that? And the thing is that these kids are frequently the target. It's exactly because of the differences in that kid's life that they are targeted for bullying."

This story is anti-climactic. After I said my piece I sat down, nervous and sweating. There was a pause before the next person spoke, but the assembly went on. I don't remember much more of it, but I hope that something I did that day made a difference. Perhaps I expanded a few kids' minds that day. I hope so. I'm going to go hug my own kid now.

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.