Help for Healing

Bitter & Sweet, living daily with grief


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Memories

Almost every time I speak, something happens that I think, “Ah, that is the reason I was here today.” I mean, it is always a rush to connect with an audience, and it is an honor to hear people’s personal stories. But sometimes there is a wow moment. You might have read about last September when someone approached me and introduced me to the world of genetics. That was one of those moments.

Last weekend, I had another one. I had a small part moderating in a medical conference. I had my books out on the registration table and tried to be there during breaks, etc.. A woman who looked familiar approached me and asked if I remembered her.

Turns out, she worked with Gilda’s Club, which is a support service center for patients with cancer and their families. (It was started by Gilda Radner.) The summer that Tim was sick, Frankie was just seven-years-old. Miss Kathy held a week-long day camp for kids that either had cancer, or had family members that suffered from it. Frankie went every day.

I remember at the end of the week they had a presentation where the kids showed their projects, read their writing, etc.. I was told quietly, there was a young man who worked with the kids in his early 20’s that Frankie literally grabbed on to. He stuck to him like glue. I have a picture of him holding Frankie, and Frankie had a death grip hug on him. (I would post the picture except I am out of town right now and don’t have the external drive where my pictures are located.) I told them that made perfect sense. Frankie was (and still is) ridiculously close to his brother Colin, who was close to the same age. Plus, well, he was losing his father.

Whenever I think of those events, I get overwhelmed with emotions. Frankie was so so so little back then. He acts so well-adjusted (and still does) that sometimes I forget just how hard losing his father was on him. Him clutching that man was a sign of the quiet desperation that was probably inside of him. “I need a male in my life. Don’t leave me too.” I heard it loud and clear.

With the hundreds of kids these people see every year, I can’t tell you what it did to my heart to have Miss Kathy come up seven years later and ask about Frankie by name. She said that picture went around the office between them for quite a while. She wanted to know how he was doing now. I couldn’t grab my phone fast enough to show her his hockey pictures. Then there was the picture I took in September that I snapped and then looked at it in shock. Where did my little boy go? It is obvious he is a young man now and it was happening right before my eyes without my fully noticing. I told her with pride how he has a 96 average in 8th grade while taking three advanced classes.

She was so happy to hear. She promised to tell the guy she works with. I was happy to know they are both doing the work they are so gifted at. And I knew. Seeing her was why I was there that day. What a tremendous, moving gift. No wonder my family has fared this situation as well as they have. We were surrounded with people like them, who remember us in detail after all these years.

Now I have to wipe my eyes. Thanks for the gift, Miss Kathy and friend. And to the many, many others of you who know you are on the list as well. All our love to you!

 


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Orthodontists

Frankie got his braces off. If anyone asks your opinion about putting braces on a kid at a younger age, I would advise not to. We tried it. It made sense to me. If you put them on early, the goal is to make room for your teeth to come in correctly, eliminating the need to have them later. We did it and the orthodontist considered it a success because Frankie didn’t need to have eight teeth pulled. Frankie and I? We both thought it would have been much easier to have the teeth pulled in one shot. He ended up needing a second set of braces anyway. I had eight teeth pulled when I was his age before I got my braces.

Anyhow, he got them off for the second time this week. He gets the retainers on Thursday. It’s an interesting office. Up until a few months ago, there were only women in the office. I mean, thousands of women. Now there is one young guy that works there. Brave guy. It drives Frankie crazy there, but I love it.

When I came to get him, the receptionist said they post the “new smiles” on their Facebook page and even video. There is a literal red carpet, balloons, etc. to celebrate. But Frankie said he didn’t want his picture posted there or on Instagram. They thought maybe if I talked to him, he would consent. I laughed out loud. Obviously they have no idea what this kid’s relationship to his mother is. He generally tries to do the polar opposite of anything I do.

I told them that he gets mad at me when I post things on Facebook with him. He will say very indignantly, “Mom, I didn’t give you permission to post that.” I ever so politely tell him, “Sweetie, I own you until you are 18. I don’t need your permission. So sorry.” The receptionist laughed. It occurred to me that I don’t sound like a very good psychology person. I should be saying that I need to respect his privacy, or whatever. I guess if I thought that he truly didn’t want it other than to disappoint me, I would try to respect his wishes. But there are lots of people who love and support him and are interested in his life.

As Frankie walked down the red carpet, I told the doc that it was probably my fault he doesn’t like to post stuff. I wrote a book about our family and now he doesn’t want anything to be out there. She looked at me and said, “It’s not your fault,” with a surprised face that wondered why I would ever think such a silly thing.

That’s part of why I love her. She is fun. She is nice. She treats all the patients with respect. But make no mistake. She is clear about where a kid’s place is. Anytime a comment was made, even in the tiniest way, she always spoke up and reminded Frankie that he is responsible for himself. I love her strength. And I appreciate the occasional reminders that I am a great parent and I get to make decisions around the house, in spite of whatever teenagers happen to feel differently (even if it is developmentally normal for them to push the envelope).

I don’t have a good picture of Frankie’s new smile. He let me take one, but it was a frightening picture more than it was flattering. So just trust me. Round two with the braces worked. He looks fabulous. And thanks to the folks at the orthodontist’s office for boosting me in ways they have no idea they even did!


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Deja Vu

I had a visit from Tim the other night. It didn’t come in a dream or in the form of a hummingbird. He came embodied in his now 14-year-old son, Frankie. We have season Sabres tickets (NHL hockey). Tim had them for years and years. When I first met him, it drove me crazy. I thought the household passion for hockey was ridiculous. I remember Colin and Matthew playing mini-stick hockey in the living room and I would say in disgust to my mom, “Who the heck plays hockey in the living room?”

Of course, I have had to eat my words (and my attitude) about a thousand times since them. Frankie and his brothers and friends still play mini-stick hockey all the time and of course, the best place to play is in the living room. I get it now.

We often struggled financially for the first few years of our marriage. I finally saw a purpose for those damn tickets when the Sabres made the play-offs. People could sell their tickets for enough money to pay for the entire next season! Tim was mortified at the mere suggestion of  selling play-off seats and I couldn’t believe it. Then I went to a play-off game with him. Holy cow. I couldn’t believe it. The energy was out of this world. I never asked him to sell those tickets again. The Sabres in the play-offs? Priceless. No amount of money would be worth it. (Ok, maybe a million bucks or something.)

Usually Colin and Frankie get the tickets. They are super great seats. Here is our view of the ice:img_20170110_185749335

See what I mean?

Anyhow, I decided to take Frankie to the game this week. He is a teenager, so of course he wasn’t thrilled with the idea. In fact, he said no at first, but then he came to his senses. Now, he was only eight-years-old when his dad died, but sometimes it freaks me out by how much he can mimic him. Part of me was thinking that I’m the parent so I need to put my foot down. Then I thought better of it and decided not to rock the boat any more than was necessary. Getting him to spend the evening with me was miracle enough.

The first argument, I knew, was going to be parking. Tim knew where to park so you didn’t have to pay. I would only go to one game a year so I would tell him that I wanted to park close and pay. It is cold and miserable in Buffalo in the winter, but he was driving so I always ended up walking and freezing my ass off. Frankie is quite indignant about paying for parking. He thinks it’s ridiculous. It was raining and the winds were horrid, but we parked where he told me to (which was of course, where his dad used to) and walked to the arena. I was cursing under my breath…LOL.

I tried to engage him in conversation throughout the game, but unfortunately I am hopeless. I kept saying the things that absolutely drive him bonkers. Such a woman. I don’t get the intricacies of the game so I comment on things I know. “Hey, number 90 is Ryan O’Reilly? He is the fathead you got for Christmas right? I didn’t realize who he was. He is my favorite player.” Frankie looks at me in shock. Why is he my favorite player? Now I am silent. I can’t possibly explain to him that last year when Emily was in town, she and her friends and I went to a game. Number 90 always warms up the same way and he is different from the other players. He does these stretches that look incredibly sexy and naughty on the ice. I just tell Frankie, “No reason.”

More dumb comments from a mom. Hey, a lot of the players have beards now. What’s up with that? What will they do when it is play-off time when they are supposed to grow beards? Again, Frankie just says, “Grow their beards longer.” He hates that the only thing I seem to notice is the looks of the players. What can I say? I’m a single woman and some of the players that still have teeth are pretty hot.

A second miracle occurred. Frankie agreed to a selfie and even said I could post it. You can tell by his face that he wasn’t thrilled, but he let me.img_20170110_185509102

It was a great game. We actually won. There was a big fight in the first period. Other than embarrassing Frankie by dancing when we scored, we managed quite well together.

Then the drive home (after the long walk to the car) and more arguments about taking the side streets home rather than the thruway. I spent the night with my teenage son and my deceased husband. It was a great night!


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Genetics Update

Yesterday I posted on Facebook that I was sitting at Roswell and was unnerved and anxious. I was overwhelmed with the responses of support and curiosity that I got. Thanks to all of you! Let me back up and explain.

This whole world of genetics is new to me and it carries a whole lingo and mindset that needs to be learned. To understand how I even got involved with it, check out my blog from September 22 of this year called “Genetic Markers.” Initially there was a whirlwind of research to do and then there was a waiting period until this appointment came yesterday.

Whenever I go to Roswell, there is a slight PTSD type of reaction. It’s not that we had an awful experience there, it’s just having cancer is awful. The place triggers it all- just the sight of it, the smells, the atmosphere. It all comes back. Not rushing back, but it comes back nevertheless. I was waiting to register when a lovely woman brought a tea cart over. It is one of those little things they do there that makes a big difference. I find tea comforting.

I actually had to register Frankie as a patient because he is the one who is eligible for genetic testing. When you are a patient at Roswell, they make you a green, plastic card with your name and a patient number. You have to use it every time you go for an appointment or test. That became a major trigger for me. No amount of rationality helped me. By the time I was in the waiting room at the clinic, I was worried I might have a panic attack. That was when I posted on Facebook. Telling someone, even if it just posting in cyberspace, somehow seems to help me. Then all those amazing responses got me through.

Once I got in, it was actually quite great. Mary was warm and engaging. She was clearly prepared. She had all of the information I had sent in and had organized it and done her homework. She knew everyone’s names and has a brilliant, scientific mind. I told her at the end that I could follow her when I concentrated fully, but I don’t totally wrap around the concepts overall. My brain just doesn’t work that way. My strengths are in an entirely different area of the brain.

Anyhow, this is a lot of information but so many people expressed interest in it for their own families, I will tell you everything. Your situation won’t be the same of course, but I think you can get the basic ideas through my information. It is all quite fascinating (even though it makes my brain hurt!).

First step is to gather all information possible on both sides of the family. The paperwork was done around Frankie, but Mary wanted to redo it with Tim as the center. I don’t have very much information on Tim’s side of the family but I did what I could. Death certificates are very helpful because they usually have the cause of death. You can get copies if needed, but they do cost money. Just like in the mental health field, what you look for is patterns. Also, you look for other contributing factors. Was this person in the family a smoker? Did they have other related diseases (in Tim’s family it was diabetes)? One of the most curious ones was is there any Jewish ancestry anywhere?

I remembered while I was there that at one point I did a genogram (family tree) of Tim’s family to try to figure out who everyone was. I found it later and took photos of it to send to Mary. That required me going through the two memory boxes I have stored in my closet. I haven’t pulled them out in a while. I had forgotten some of the things I had put in there.

The majority of people who have cancer, have a “random” form of cancer and don’t need a genetic evaluation. One of the ways they determine that, is to look for a cluster of diseases and other such factors. There are some things Tim does not fit the criteria for, but he does hit three major points; 1- he was under the age of 50 when diagnosed 2- his form of cancer was rare 3- he had a family history of it (his dad’s cancer was also at a rare age). Those three things make it appropriate to ask the question, “Is there a possible genetic contribution”?

Now, of the people who fit the criteria to even ask the genetic question, only 20% of those get an answer to what they are looking for. Sigh.

With current technology/research, there are 50 genes that are known to have a cancer connection. Everyone has these genes. What they are looking for is an alteration of the gene of some sort. Because gallbladder cancer is so rare, there are no known genes that are directly linked at this time. There are however, two possibilities that could be correlated.

The more likely of the two is Lynch Syndrome (HNPCC). It should be “considered”, but gallbladder is less likely to be correlated than other types of cancer. For example, colon cancer has a 50-80% chance; uterine 60%, etc.; so the chances are much less likely but it should still be considered. Having said that, this type is adult onset, meaning there is no testing until age 18, and no screening until age 25 so Frankie is at no immediate risk. However, the older three kids are exactly at the ages where it could be relevant. There are five genes associated with this, and they are found by a blood test. If it is a no with the test for the five genes, that doesn’t necessarily mean the family doesn’t have Lynch Syndrome. It just means we are at the end of the limits of our current technology/research at this time. If Tim does have it, each child would a 50% chance of having it. It would also mean at least one of Tim’s parents had it. That would mean this information would be relevant to all of Tim’s sibling and their children as well. I’m sure I lost a lot of readers by now. It makes your brain tired, doesn’t it?

Even less likely, is the second possibility, the link to the BRCA1 and BRCA2 genes that have been studied. For women this usually plays out with breast and ovarian cancer; for men in breast and prostate cancer; or generally in melanoma or pancreatic cancer. This is hard to detect because Tim’s siblings were all male so no chance of the female occurrence. The same information is true for this as far as if he tests positive, each child has a 50% chance, etc… (Who wants to read all that again?)

One thing to remember in general with genetic testing, is that the risk is NEVER 100%.

One of the vast improvements in recent years, is that historically a separate test would be required for each of the genes in question. This was costly and time prohibitive. Now they do what is called panel testing, and there can be many tested all at the same time. This is cost and time efficient.

While technology/research is constantly advancing, that means what is tested today could be very different from what they would be able to test for in the next five years. For example, just two years ago there were only 40 genes, and now there are 50. Roswell cannot legally contact patients to let them know of new research. So they will encourage myself and any other patients to call in yearly to check on any new advances in a relevant field.

For Tim specifically, we have the option of testing his tumor. The hospital keeps samples seven years, and we are at six and a half. However, the current tumor technology is specifically geared toward treatment planning for those patients who are still alive. To test his tumor would cost about $4,000 and would not yield information that would be useful for our purposes.

The really great news, is that Tim signed up when he was a patient to allow his blood to be used for research at Roswell. I don’t remember that detail, but I am pleasantly surprised because he was not an organ donor. That concept kind of creeped him out. Mary contacted their research lab and found out that Tim’s blood has not been used for any research yet and I have the legal right to get it back!

The lawyer is looking into what legal document is necessary to prove my right to it, but I need something that shows I was married to him at the time of his death. While that sounds simple, so far that has proven to be more difficult than it should be. There are marriage certificates and divorce decrees, but no one has thought of a document to say, “Hey, this couple never got divorced.” Go figure. Anyhow, once that is all taken care of, Tim’s blood will be sent to Prevention Genetics in Wisconsin, which is a DNA bank. They will keep it until we know exactly what we want to test for. The cost is $149, a one-time fee.

Any testing though, will be an out-of-pocket expense. It’s one of those insurance rules that lacks common sense. It would be cheaper to do genetic testing and prevent cancer than pay for treatment for cancer if the person gets it. But, nope. (Just wondering why they cover birth control because it’s cheaper than paying for pregnancy. Same logic, isn’t it?) Mary is looking into how much blood is available and if there is enough for more than one round of testing. Once I know that, I will have to make a decision: test now, or wait several years until Frankie is older. The advantage of waiting is that by the time he is old enough, technology/research will most likely have advanced significantly. However, testing now would help the older kids. The question is, do the older kids plan to follow-up on the information now or not? Many people do NOT want to know the results of such testing. This is a conversation I will have to have with my older kids.

By the way, the current cost of panel testing is $1000 smackers. When the time comes, maybe I will try to set up one of those “gofundme” accounts. I have seen them for much less noble causes, so why not try? If not, I will certainly pay for it myself. Possibly saving one of my children’s lives would be worth much more than that. By the way, I will be asking Mary to read this to see if I slaughtered the information or did it justice. If I screwed anything up too bad, I will write corrections on next week’s blog.

Last night I had a tough time. I thought I was all good but after spending the evening alone, I laid in bed and felt all the tears well up. Looking through those memory boxes (ever so briefly!), thinking about cancer, talking about Tim so much, and worst of all imagining my children having to possibly deal with their own diagnosis someday caught up to me. Haven’t had a tough night like that in a while. But I got through and today is a new day. I hope this is helpful to some of you. I hope some of you found it interesting. And for those of you who were bored to tears, thanks for reading anyway :)!


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Trouble in Tennessee

Last week we went to Tennessee for Thanksgiving. While we were driving, my niece Sara saw on-line that a bus of children were in an accident in Chattanooga. As the details unfolded, it appeared like it might have been on purpose. Now it is hard to tell. At the least, the driver had been complained about and six children are dead. Horrid.

At the end of the week, I drove to Chattanooga to meet my dear, dear friends that I wrote about last week. Melinda is a friend of my daughter Emily in Georgia. She was an amazing help when Emily had her time in the hospital. She has a fascinating life and history of travel and culture, but to me she seems like everything good that you think of when you picture a Southern mom. She is beautiful and charming, and she has raised five children. I haven’t met her son, but I’ve met her four daughters. Three of them came with her to meet me last week. Laura is 19, Mia is 17, and Lily is 14.

They say boys don’t mature as fast as girls do, but I can’t even believe that Lily is the same age as my Frankie. She is gorgeous like her mom and sisters. The other thing they all have in common is they are polite as hell. I love the “yes ma’am” thing they have going. When I was waiting at the table for them to arrive, Lily and Laura raced to see who would get to me first in the booth. They both hugged me hard and long and I just wanted to cry. I mean, I just adore these women. I can’t tell you how honored I am that they seem to adore me back.

The truth is, I was pretty sick that day. I kept trying to talk myself out of it because I was so damn excited to see them. Of course Melinda could not be fooled and she called me out during lunch. I had to admit I was fading. We decided she would drive my car to a drugstore, then to their hotel down the road. The girls would stay at the mall and shop, which is what we were supposed to be doing the whole day.

Melinda took excellent care of me and she acted like she didn’t mind one bit that her time with her girls and myself was turning into laying on beds chatting instead. We were surprised though when the girls got to the hotel shortly after we did. They told us an announcement came over the mall and they were locking down the stores. They were able to get out. It was a bit unnerving when the truck didn’t start right away but they got to the hotel safely. We had to wait for the story to break on-line and then on the news later. There was a lot of confusion, but the story we got was there was a shooting at the mall! We were in shock and scared out of our pants.

It turned out the incident was actually in the parking lot and thankfully only person was taken to a hospital. It was most likely a personal issue and not a mass anything. Not that it was a good day for that person, but until you get the correct information, it very well could have been another massive tragedy. The odd thing, is that before anything happened, Melinda and I were talking about Laura and what an amazing woman she is. She is a rock in a crisis. I told her that Laura is more mature and responsible than many women I know who are much, much older than she is. She is an old, wise soul. She just proved us right. Bad week for Chattanooga though. Holy cow.

And now there are those raging fires. I don’t mean this in a condescending way in any shape or form, but poor, poor Tennessee. That is a lot of hits in a couple of weeks. Let’s all keep the people there in our thoughts and prayers.

To Laura and her delightful girls: I owe you a REALLY fun time, hopefully very soon!


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Life Lessons

Have you ever made a big mistake? Like one with deep regret? I had that happen this week. My dog Taffy has been getting a bit more of a pain the older she gets. Let’s just say that a few months ago she was diagnosed as “neurotic” and given a prescription for Prozac when she needs it. No, I’m not kidding. She was perfectly normal when she started living with us seven years ago. Just saying. This is a picture of her in my car.

Taffy

Taffy

Last week she ran out of the car and crossed the street to chase a squirrel, right in front of a car. Now I have to leash her from the car to the woods, then when we leave the woods to the car. It’s less and less I can let her off the leash. This week, I took her to the creek at the end of the walk and let her go in for a drink. That stinker took off to the other side of the creek and went down past the bridge. I followed her as far as I could but then lost sight of her. There is nothing to do at that point but go home and wait for someone to call me.

Eventually the call came. It showed up as “police” so I answered and said, “Do you have my doggie?” The officer laughed. He said he had Taffy and she was under arrest. He couldn’t capture the other one. I was confused so he asked how many dogs I had. He said Taffy had found a friend which was probably why she ran away. He was waiting at the parking lot where I had walked her. She always comes back. She isn’t really running AWAY from ME, she is just running.

Well I pulled in and that is when I made the big mistake. I could have won the best Facebook post of the year. If I was Catherine, I would have never made this mistake. I didn’t even think to ask to take a picture. There was Taffy, sitting in the back of the police car, looking out the window. Her face was priceless but predictable. It said, “What? What? I didn’t do ANYthing!” I could’ve died. The officer and I had a big chuckle over it. When I drove off with my naughty girl who now has a police record, that’s when I regretted not getting a photo of her.

LESSON: Always take a picture, even if there are cops involved.

My sister was over yesterday and she said how last week’s blog was her favorite. I told her that I totally forgot about Frankie’s Louis Armstrong impersonation, which is quite impressive. I asked him to do it for her and of course he utterly refused. In fact, he refused for hours. I told him about the blog and he got really offended. He said, “Mom!! You can’t write about me unless I give you permission. You can’t!” I told him I used his writing name Frankie, but he knows that is bull because most of the readers know who he really is. I decided it best at age 14 to not inform him that legally, I own him and his rights until he is 18. I found that out when I wrote the first book. (Incidentally, you also own your dead spouse’s rights in case you ever need to know.) On a serious note, I really do try to think about how he might feel when he is older and I am hoping he will appreciate what I have done when he is at an age where he doesn’t think everything I do is ludicrous.

LESSON: It’s okay to leave out information if it saves you from a teenager’s yelling and screaming for a few hours.

SERIOUS LIFE LESSON: No matter what heartache life brings you, no matter what loss – don’t ever let the loss be your sense of humor.


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Frankie

I’m learning a lot about cross-country this year. I’m also learning a lot about where the schools are all over Western New York. It’s crazy. Fifty minutes to drive to the school, and the race is about 11 minutes. At first, Frankie told me I didn’t need to come to the meets because it wasn’t a big deal. But one week I was running late and I got a call on my phone. Hmmm… I think in spite of what he says it’s important I be there. You know teenage boys. They want to keep their distance, so this sports thing is making me feel warm inside.

I can’t even possibly explain what it is like to ride home in a car with him for 50 minutes. But I’m going to try anyway. A video would be much better, but if they know you are recording them, the gig is up. Anyone with a teenager knows that the seat next to the stereo buttons is the most important seat in the car. Usually, if I hear a song and forget myself and start to sing or dance, that is Frankie’s signal to change the station. I know, he’s a punk.

Last night was different though. It didn’t matter what I did or not. He was on a roll. Fifty minutes of flipping through stations. Rap is not one of my favorite genres. That is, unless Frankie is the one doing it. When he knows all the words it always amazes me. But when he doesn’t? He makes crap up on the fly and it absolutely kills me. It makes me laugh, then it scares me. What the heck goes on in that kid’s head?

Whatever station is next is just that. Classical. Frankie makes up a quick rap to classical about how the Pilgrims (I assume inspired by his upcoming favorite holiday of Thanksgiving) had developed the first flutes (inspired by the flute song on the radio) the sound of which would lure turkeys to the feast (inspired by the lone live turkey that was sitting by the side of the expressway).

Jazz? No problem. He starts dancing like a very, very chill dude. He mimics a guy who is probably mellowed up by smoking weed, and talks about being “jazzed as shit” by the way the melody has carried him.

Suddenly, he breaks from music entirely and sees a car in the other lane crossing over into ours. He yells at the top of his lungs, “Hey mister! You are smothering me. Smothering me I’m telling you. Man, I need my space!”

Spanish station? He starts chattering rapidly the speed that Spanish usually sounds like. He doesn’t know much of anything in Spanish except counting but he can make stuff up like no one can. He is especially good at the Canadian stations. He is the star French student at school so he throws out random words that sound like he’s fluent.

When I finally get home and walk in the house, I tell Dad I am exhausted and there is something wrong with my son. Without skipping a beat, Frankie puts on his most serious face and says, “Mom, that really hurts my feelings. Besides, that never happened.”

Many times his humor is inappropriate for his age, but he gets away with it because I crack up laughing. He’s funny as hell and creative too. He just tells me that I need to get out more because I’m amused too easily. He has definitely come a long way from his newborn picture that is the logo for Baby Coop Publishing. Did you know that was his actual picture? That cute, perfect newborn face.

Anyhow, I was going to blog about all my new genetic knowledge. Then I was going to blog about “Oc-fuckin-tober” as tomorrow is the six-year anniversary of Tim’s death, which I celebrated by having my first full-blown panic attack in several years. But instead, I decided to write about my nutty kid. He was a bright spot for me. I’m sure words don’t come close to making you laugh the way a video would, but I thought I would try.