family time | The Life Well Lived

When it comes to perspective, I am not sure there is a single perspective more powerful than how we ourselves. However if there is one, I bet it is how we think others see us. Do they see all of our failings or our strengths? Do they see us as worthy of love?

Over the weekend, J and I took a hit in the how we think we are viewed by our kids. Our son,O, ran away. It started off as his usual morning defiance, riling up his younger sister and refusing to do the normal morning routine. He thought we would chase him down and force him to do it. So when I told him I had our foster baby in my arms because I was feeding him and there would be consequences if I had to go get him, he said “Make me.” After another minute of him dancing around, I put down R, and I went to go get him. He was waiting by the door which he opened with a smile towards me when he knew I could see him. He ran out into a down poor of rain. I texted J, and we thought his attempt to get attention shouldn’t work. He would come right back. After all, he wasn’t even wearing shoes.

He did not come back. He ran and 20 minutes later while J was out looking for him, he got into a stranger’s car. He told them he did not want to come home because his mom “mistreats him.” He was so lucky, because the older couple took him to the police station. The woman fell carrying our shoeless son into the police station treating him like the brave abused boy he was portraying himself. The cops heard he was “mistreated at home” and there were two other girls and a foster baby in the home. The cops took him to the hospital for an exam and to take photo’s of the bruises on his body as evidence of his abuse.

Of course by this time, I have called the police department giving his name and description trying to get their help to find him. After we had heard nothing for another 30 minutes, I called them back. They said a car was in route to my house. Two cops came in and asked if they could search the house. I replied, “Sure, I have looked everywhere in case he snuck back in somehow, and we have had a neighbor who does searches for the police over to look already, but the more eyes the better.” At this point, we have most of our street looking for him with phone calls out to all of the friends we could think he might try to reach. When they called back in, they said another cop was on the way to our house, their commander. When he got there is when I got the phone call saying O was safe at the precinct, but he was on the way to the hospital for an exam. We were relieved, and J wanted to go be with him, but we were asked to stay at home for questioning.

They took pictures of his bruises, none of which were from us. Wrestling on a trampoline with a kid who outweighs you by 30% will do that as will falling from the lip of a bathtub he was dancing on for his sister’s giggles. As I spoke with the ER doctor, I felt his hostility towards me grow steadily less when I explained his diagnoses and medications. Even though the doctor and Child Protective Services agent believed me, we still had to wait for him to come home and find out if there will be an investigation effectively ending our ability to foster children.

Now O had no idea the ramifications of what he was doing. He started off afraid of being yelled at again for misbehaving. Then it was a fear of being yelled at for running outside, and when I didn’t chase him he worried more. Fear drove him to act and then exaggerate. When the cops said they were going to go get the other kids in his house, he was happy. It never occurred to him that did not mean they would be with him in a new home. He just did not want to be yelled at again. When we questioned him about the ordeal that night, we had to be extremely careful with the wording of questions, because he was searching to say only what he thought we wanted to hear. He was still scared to the point he would have agreed to leave our house because he felt scared there.

I know his very early childhood before us was hard, but will he always be this scared? Will he always act impulsively to better his immediate situation without understanding how others perceive his actions and the motivation for them?

If one reads the Atlantic this month, it would seem likely. The article, There’s No Such Thing as Free Will, argues our thought process is predetermined by chemicals in our brains and the neural paths signals can take. Science seems to be arguing the nature side of the nature vs. nurture is the better bet for predicting and explaining actions. I buy the science behind the article, but I think it is too static. Sure we can predict/explain a behavior or action by looking at the brains pathways, but over time are we explaining the actions or the predispositions to certain actions?

Atlantic, There’s No Such Thing as Free Will

Can we change the brain process over time? Is this self determinism or free will changing the determinism?

Having seen Ericksonian hypnotherapy work, I also question how fixed these predetermined thoughts, reactions and emotions are to given stimuli. Can we not change how our brains work? If we can decide to change these paths, then the predictive value of the determinist model would seem to fall apart. Granted, one may say the decision to change was predictable, but were the situations to allow us to do so also predictable?

Family, it does a soul good. The next step is teaching our body to react to this truth.

Raising kids who have gone through trauma but still have highly malleable brains, I have to hope the nurture model can help. Maybe I am but a part of the masses needing to be gullible, but I tend to think the brain was wired to make this choice and do this action is believable only in a specific static scenario. My brain, as it is right now, will always decide A if given a choice between A and B. However, I might train to look at both choices and sometimes choose B based on a different decision model. My thought processes are not carved in stone, and I hope my neuro paths are not either…though a bit more resistance to cuts of those paths would be nice (Sorry, bad MS joke since Multple sclerosis, which I have, means many cuts).

Could we not plausibly argue the brain paths simply predispose us to a course of action or thought at a given time under given circumstances? Can we then work to narrow the range of circumstances prompting the bad reactions and broaden the number of paths to the preferred outcome? If not, then why bother with parenting?

Side note: The highlight of my week came when I heard O tried to calm a girl in his class using what I had taught him. I have been working with him to be the candle giving a soft glow rather than an inferno burning everything to ash. It was all based on a nintendo Wii game where you have to sit perfectly still. We started saying to each other, “Be the candle, not an inferno.” Of course for me, the candle is my grandfather’s torch of my dreams.

Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)

I have a habit of looking back at the end of a year and taking a moment to think about what was important in the year. Often things which seemed huge at the time seem much smaller with the gentle lapping of time’s waves. Other events which seem trivial loom large as their occurrence warns of an incoming avalanche.

With that said, here are my most salient memories of 2015. I turned 40, and I realized I have had MS symptoms for 10 years. Now just having MS for 10 years doesn’t seem like that big of a deal ten years into it. However, early on when I was dealing with head aches bad enough to make me pull over to the side of the road to puke or could not hold on to a soup cup for long enough to pay for it, my ability to still maintain a full time job and help my wife raise three medically fragile children would have seemed foolishly optimistic. So here I sit at 40 years old and having had ten years with MS, and I am planning to run the Yellowstone half marathon in June. It is my way to “rage against the dying of the light.”

When I think of big events of 2015 for me and my family, the events list start with the adoption of K. She has been with us so long, the formal adoption was almost taken for granted. She has been family almost her entire life, and we take it for granted at this point. Of course that is a sign of the truth of the statement in fact as well as in law that she is family.

For other family events, it is hard to come up with one bigger than the summer family reunion in Arkansas. For me, it is still amazing to see the family bonds strong enough to pull more than 75 people together from all over the world every five years. It feels like living in a story from the fifties because I don’t see or know of many of my friends still having big family reunions. It’s an invitation to be accepted into a family group larger than our nuclear family and close friends. For our kids, how great is it to get to know they are connected to so many people of different cultures who approach things differently? Still better, the family reunion was followed by a week with just uncles, aunts. grandparents and cousins. So their personal net of connections got cast out wide and then pulled back just a little to deepen the ties a bit closer on the family tree. The whole trip was a fascinating time to renew friendships and definitely one of my favorite highlights of the year.

Continuing on the family side, I was also lucky enough to chaperone each of my two oldest on their respective scout camping trips. It may seem silly to rate nights spent laying on the cold ground as highlights, but I enjoyed the time bonding with my kids and watching their interactions with their peers. I figure I am not that far away from a time when my kids will grow apart from me and not want me hanging around. After all, the “cool” dad role has a definite expiration date. So for the time being, I will enjoy the chance to tell stories around the camp fire and laugh as other kids are now old enough to know some of the myths I draw from to craft my stories.

On my work front, 2015 was rewarding, informative and depressing all at once. The project I manage lost 6 of it’s 4 employees during the most hectic part of the schedule before publication. No that is not a misprint or a mistake. We lost the replacements of 2 of the spots as well. When we published in September, there was another project manager and I along with two employees who began April 1st and 2nd. When I say rewarding, it is because we accomplished what most outside our group said could not be done for months leading up to publication. I was lucky to get good employees who quickly grasped what I was trying to teach and then were able to move forward. The depressing part was being given a rating of barely passable performance by new management who never understood what was involved in meeting our publication dates. So they praised us in public for accomplishing what most thought could not be done, and then in private they rated us as low as they could without having to justify the ratings. As a kicker, the other project manager was removed from our area in the weeks following publication. The upside is the rating has reenforced in my mind the need for cultivating an ability to appreciate accomplishments regardless of others’ opinions. I teach it to my kids, and this is just an example where I need to live what I teach.

Thankfully, if my job threatened to make me question my abilities to think critically to work towards a goal, my work with the American Board of Internal Medicine (ABIM) as patient’s advocate has been rewarding. It is fascinating for me to learn how they determine what a doctor should need to know after they have been practicing medicine for years. ABIM then gave me two great recognitions of my input. They extended my term of service on the board as my initial term was expiring, and they asked me to help them on another as they set up a conference promoting patient centered medicine. Not much makes me feel more appreciated than being asked to continue and then asked to do more.

Still, the highlight from a feeling of possibly having an impact on healthcare came when I was asked on a Wednesday afternoon in October if I would present at the FDA on the following Monday. The kicker was I had to have a presentation to them by Friday. Thankfully, the topic of the presentation was REMS: Understanding and Evaluating their Impact on the Health care Delivery System and Patient Access. It was an opportunity for me to talk about risk management from a patient’s perspective because I take a drug with a chance to leave me with a brain infection likely to cripple or kill me if I get it. Talking about numbers and what they mean is the type of conversation I frequently lead at work as we review data, and I had just written about our inability to really conceptualize large numbers. So I wrote up the presentation on Thursday night and gave a quick run through with my coworkers on Friday before submitting. On Monday, I gave my presentation and actually had some applause which shocked me. Having people come up to me for the remaining 2 days referring to me with “you’re the numbers guy right?” was a great shot in the arm. I was even contacted months later by another patient advocate who watched my testimony and was impressed enough to re-watch it before presenting to the FDA at the request of the MS Society. Giving that presentation was a high water mark for feeling my thoughts on our healthcare are respected even if I think they are often given more weight than they deserve.

My theme for this past good year could best be stated, “It feels good to be valued.”

There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.

Our Family's Stories of Growing Up

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