So What If It's Constitutional?

The Supreme Court just finished hearing the oral arguments from the Solicitor General, who attempted to defend, and the lawyers representing the states that have filed petitions to strike down the Affordable Care Act, colloquially known as Obamacare. At the center of the argument is whether the individual mandate, that all Americans must purchase health insurance, is constitutional. The argument of the government made by the Solicitor General is that it is constitutional under the commerce clause within the constitution.

The Commerce Clause in Article I, Section 8 of the U.S. Constitution, states that “The Congress shall have Power…To Regulate Commerce with Foreign Nations, and among the Several States, and with the Indian Tribes.”

The Solicitor General’s argument is that healthcare is an interstate commerce, and that the individual mandate for people to buy healthcare is a means of regulating that commerce. The idea is by requiring everyone to purchase health insurance, it will keep healthcare costs down, because there will be virtually no one who is uninsured. When a hospital sees someone who is uninsured, the hospital doesn’t get paid for that patient. So they charge more to the person who is insured and who will pay to cover the loss caused by the uninsured. By requiring everyone to be insured, it keeps healthcare costs down for everyone.

Another element is that the requirement that everyone be covered with the same level of insurance (whether an individual actually needs a certain type of insurance or not) keeps the insurance costs down for everyone. By requiring everyone to be covered for birth control costs, everyone pays less for birth control coverage. It doesn’t really matter whether a person needs birth control or even wants it. Lesley and I practice natural family planning (successfully, I might add). Yet, under the mandate, we would be required to pay for birth control coverage. By requiring everyone to pay the same for the cost of coverage for, say, heart disease, it keeps the cost down for those who are at higher risk for heart disease. In other words, the young, healthy athlete who is at minimal risk for heart disease will share the cost of coverage for the overweight, middle aged man with high blood pressure who eats a Culvers Double Bacon Cheeseburger every day for lunch. The fact that the young, healthy athlete is at minimal risk for heart disease is irrelevant, because he may be at risk in the future, and he doesn’t know exactly when that risk may develop.

The Solicitor General argued that this is not creating commerce in order to regulate it because everyone is already in the healthcare market. At some point in your life, you will need some kind of healthcare. So it’s not like they’re forcing you to buy healthcare. You will need it, and you will need to pay for it. By requiring you to get insurance and requiring you to get a certain level of insurance, they are regulating the method of payment of an interstate commerce (healthcare), and therefore keeping the cost of healthcare low for everyone.

That’s the argument.

So these two elements, requiring everyone to have insurance and requiring everyone to have the same level of insurance, whether an individual is at risk for what he or she is required to be covered, is under judicial scrutiny. Let’s assume for a minute that the law stands as constitutional. Personally, I’m hoping and literally praying that it gets struck down, but for arguments sake, let’s pretend that it stands. I think we need to ask the question: Is this really something we want our government to be able to do?

We give the government permission to do what it does. That’s what it means to have a government of the people and by the people. If we give the government permission “to regulate healthcare” under this premise, think about the repercussions.

Everyone is already in the transportation market, whether someone owns a car or not. In other words, everyone at some point in his or her life is going to have to go from point A to point B. You prefer public transportation, and so you don’t even own your own vehicle. Under the reasoning of the Solicitor General (and those who passed this law), the government could require you to purchase “Transportation Insurance,” in case something were to happen to you while you were going from point A to Point B. By requiring everyone to purchase “Transportation Insurance,” the government is making sure that everyone is covered during this commerce activity. Not only can the government require you to purchase “Transportation Insurance,” but they can also require you to purchase “Full Coverage Transportation Insurance,” which is the same insurance that they require people who own their own vehicles to carry. I mean, you know, just because you don’t own a vehicle now, doesn’t mean you won’t buy one in the future. And by distributing the cost over a larger pool, it keeps the costs down for everyone.

Or let’s say the government wants to focus on those who are specifically in the automobile market, you either own a car or are looking to buy a car. The government could say that it wants to regulate your method of payment for a vehicle, so now it’s going to require everyone who owns a vehicle to have a loan on that vehicle. Whether your vehicle is already paid off or not is irrelevant. If it’s already paid off, you are forced to take out a loan against your vehicle. I mean, wouldn’t a few extra thousand dollars in the hands of that many consumers be good for the overall economy? By requiring everyone who owns a vehicle to take out a loan on the vehicle, it redistributes the risk associated with those who are at high risk of defaulting on their loan payments. Everyone will pay less interest on their loans, because the pool of those paying loans will be larger. It’s really irrelevant whether you need a loan to buy a car, it’s better for the majority to make everyone have a car loan because it keeps bank interest down on loans. By doing this, it makes loans more affordable for those at higher risk. Also, the risk of an individual defaulting on the loan payments is irrelevant. If person A defaults on their loan payments, it’s not as a big a blow to the bank because you’ve got persons B through K paying on their loans faithfully.

The same argument could be made for housing, since everyone is in the “shelter market,” because everyone needs shelter. So, from now on, the government is going to regulate the method of payment for housing. You are no longer allowed to rent. You must buy your place of residence. Not only that, you must take out a mortgage for your place of residence. By spreading out the risk of those who would default on the payment among everyone, then the costs are lower for everybody. Right?

The law, in other words, is consistent with what we’ve known about President Obama and the democrats who controlled both houses of congress when it was pushed though congress. It is basically a policy of redistribution of wealth. What the government proposes to do is to make some pay more (those who are low risk, and therefore can get by with minimal or no insurance) in order for others to pay less (those who are at high risk for needing medical care).

You may think that my illustrations are far fetched, but there is a principle of law that needs to be understood: Restrictions in the law must be read restrictively, and permissions in the law must be read permissively. In other words, when something is restricted, it is restricted only in that circumstance, under those conditions. If something is permitted, it is permitted in all circumstances, and under all conditions. If we give permission to the government to regulate “the method of payment for healthcare,” that permission is granted to the government to regulate the method of payment for everything. Permissions are read permissively. Do we want to give the government that permission?

I wish Americans had thought long and hard about this prior to electing President Obama; then we wouldn’t be in this state where so many of our freedoms are being threatened under the guise of “it’s better for everyone.” Maybe we should start thinking about it now, before he gets re-elected, “and will have more flexibility,” as he put it.

Please Don't Vote: A Plea for Our Country's Good

This is an actual assignment and subsequent post in response to the assignment in a forum from an online college course. It was sent to me by a friend who is taking the online college course.

Here is the assignment:

As it points out in the textbook: The family is no longer organized primarily around child rearing (Carter & McGoldrick, 1989). Talk about the struggles of today in the raising of a family. Shouldn't child rearing be the main focus? Why or why not? If child rearing isn't the main focus, what is? How is the raising of a functional family impacted by single parent homes and/or two parent households where both parents work outside the home?

Comment on the old saying, "The best thing a father can do for his children is to love their mother." Additionally, we have all heard the old African proverb that states, "It takes a village to raise a child," but what about the idea that it also takes a family to raise a child. Exhaust the topic.

Here is the response from one of the students:

The troubles today on raising a family today is money and a stable job placement even after so many yrs people still loose there jobs and now it leads the kids to get out of daycare and find someone to watch them while you are in school or at work and if you get laid off you'll have to find a part time job that pays min wage and you will have to work it just to provide for your family and after while it puts a toll on families because money startsto run low and arguments tend to start . I dont think child rearing is the main focus i beleive the whole family should be the rearing some parents end up being sucidial killing themselves over funds and even children just to take the family out of there miseries . I believe that it is hard on both families single or both parents in the home single parents not neccassarily meaning single they raise there child on there own but the other parent does not live with them and some do and the motheres dont want to receive child support on the fathers cause they dont have a job but the dads are out in the streets hustling which that is not a good environment for the kids at all now with both parents working there is a more likley chance to have one working if the other gets laid off but if both loose there job and was saving there 401k then there shouldnt be a problem my opinion you have to have some kind of investment or a good stabaility in order to have a child because then only you have to take care of your child and yourself and if you only have enough for youself then you shouldnt have a child until you can provide for more then yourself .

The best thing a father can do for his children is to love their mother."

Good quote but its very hypercritical i beleive it works both way and you cant force something that is not meant to be the quote should be "The best thing you can do for a strong family is love your children first and gain stability."

village meaning a family well logically saying it does take a family to raise a child but you have to realize a family didnt have a child one person did and family depends on the individuals some families are supportive and others are not some families have passed and there left with themselves and some familes are not stable with money to support you and a child let alone themselves and there households a child is a very important responsibily they needs nourishment, love, affection, trust, honesty, unconditional love, support, and child is not a part time responsibilty its a full time and no matter if you get tired or feel out lost dont give up

This is the end of the post.

Incomprehensible.

The person who wrote this, a 29 year old woman, is for all practical purposes illiterate.

There is a more fundamental point here: the connection between language and one’s ability to think critically. This person’s language skills are minimal. The person cannot organize a phrase, much less a sentence. The individual who wrote this is trying to provide a critical analysis of the topic, but her thoughts are so disjointed and convoluted as to be incomprehensible and self-contradictory. I believe that this individual’s inability to write coherently is directly related to her inability to think critically. After all, we think in language.

I wish this were an isolated incident. In my graduate work at Lincoln University, I was often dumbfounded at how others managed to pass the various classes we had. Their work was not all that different than this, and that was graduate level, people who had graduated from college with a bachelor degree and were pursuing a master degree. I eventually decided that I should not hold resentment about this, because I was not in school for their education, but mine. What I learned and how I applied myself was independent of what they learned and how they applied themselves. I would only worry about me.

I wonder, though, about education today. The ability to write a sentence seems insignificant, something we take for granted. Our ability to use language, however, is not insignificant. It is foundational to our ability to think critically. The woman who wrote this has been able to attain a level of education that allows her to participate in a college level course. She cannot write a sentence, basic noun/verb agreement. I would argue that she cannot think critically because of her inability to use language coherently.

But she can vote.

This isn’t a commentary on liberal vs. conservative. I have no idea what her political persuasion is. I don’t care. I’m going to go out on a limb here and probably draw a lot of criticism, but I think this woman should not be allowed to vote. Thomas Jefferson is attributed as saying, “The greatest threat to our democracy is an uneducated citizenry.”

Alexander de Tocqueville wrote in “Democracy in America” that tyranny in America would not come in the same form as tyranny in Europe, through an unassailable monarchy. He stated that tyranny in America would occur when an ideological group gains control over the means of education and information disbursement (newspapers during his time). He argued what would happen is that only information that the ideologues wanted learned and disbursed would be taught and reported, and so people would not be given the tools they need to think critically about what the government is doing, or even about who we elect to the government. Lack of education and information would lead to an uninformed electorate, which in turn would lead to the ideological group gaining and maintaining power not through violence, but through the consent of the ignorant masses. As long as those who are unable to think critically would be allowed to participate, then the ideologues would maintain control and govern with impunity.

I am honestly fearful about what is happening in our country and around the world today. Our government has supported the “Arab Spring,” which has resulted in a terrorist organization with the stated purpose of destroying Israel, The Muslim Brotherhood, to obtain power in significant Middle Eastern countries. Our government continues to squabble over energy production, while my family’s gas and grocery bills have increased significantly over the last month, and not because we are buying more. We are actually buying less at this time at the grocery market because our grocery bills have gone up so much. We are buying less, but still spending more. Our nation’s debt is at the tipping point, and we will be bankrupt if we do not stop the outrageous government spending. At this time, you could tax every working American for every penny that they earn, and still not be able to pay off the national debt.

I don’t want people who are uninformed and cannot even organize their thoughts into a coherent structure to be able to vote. If you can’t move from point A to point B to point C in something as simple as the writing assignment that is demonstrated at the beginning of this post, please don’t vote this year. I cannot stop you, but I will beg you. Stay home on election day, and leave the fate of our country in the hands of people who can actually think. Please.

The irony is, people who can't think critically won't realize this plea applies to them.

The Systemic Problem in Government Assistance Programs

The first thing you need to know is that this is not a scientifically researched article. This article, instead, is a reflection based on my personal experience of having worked for several years in Medicaid/Medicare funded programs with those receiving social security benefits for disability based on mental and physical health problems. This is what I’ve seen. My proof is anecdotal, though my experience does not far differ from what one would find if one were to do a research study.

I had so many misconceptions about “welfare” before I started working in the mental health and substance abuse related fields. Honestly, I was very biased. “People on food stamps don’t want to work.” “People on welfare just want to live off the system.” “I wish I could get paid for doing nothing all day.”

My experience has shown me just how wrong I was.

There are some very specific things that need to be understood before we get too far into this discussion, however. One is the basic difference between Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). When we pay our FICA taxes, that money is like an insurance policy we pay to the government. I’ve been paying these taxes for many years now. If something catastrophic were to happen to me, a vehicle accident that left me disabled, an illness that impaired my ability to work, anything catastrophic that would make it impossible for me to sustain a living, I could apply for disability. If approved, I would receive SSDI. Basically, I would be receiving the benefits for which I have been paying through my taxes. That money is mine, paid to the government as a type of disability insurance. I would be getting back what I’ve paid in.

Supplemental Security Income (SSI) is for those who have not paid enough in taxes to benefit from SSDI. A person with a life-long disability that started in childhood and has never been able to work is an example of someone who would receive SSI. SSDI is based on the amount of taxes a person has paid in to the system. A person may not have paid enough taxes prior to the event that caused the disability to earn enough through SSDI to meet their basic needs. This person’s SSDI payment would be supplemented by SSI. Another possibility is that the person’s disability extends beyond the benefit limit the person paid in taxes. In other words, the person paid enough in taxes to earn SSDI for 5 years, but the disability the person suffered is life-long. SSDI will run out in 5 years, so the person will only receive SSDI for 5 years, and then be moved to an SSI income. So SSDI is based on our taxes paid. SSI is government provision of a cost of living income. This is what is traditionally thought of as “the welfare check.”

Another factor that should be considered is the intention of these government based assistance programs as compared to the results of how these programs are designed.

The intention of these programs is noble. Provide cost of living income and health insurance benefits to those who cannot provide these things for themselves due to disability. On the surface, this seems to echo the biblical teaching about caring for the poor, the sick, the lame and the orphans. On the surface this is the intent, to help people who need help.

The design of these programs and the outcome that is produced, however, do not follow the intent. The result of the design of these programs is that people are kept in poverty. They are kept, because of the system meant to help them, in a situation in which they are unable to help themselves. In other words, the design of these programs deepens a person’s dependency on the programs, rather than helping people become independent and able to care for themselves.

An example of a way that these programs deepen a person’s poverty, rather than help lift someone out of poverty can be seen in the regulations regarding limits of how much money a person can have and still qualify for benefits. When a person applies for benefits, they will receive what is called a back pay. The back pay is based on the date of application. Let’s say for whatever reason, a person gets denied disability, and then goes through the appeal process. The appeal process could take more than 2 years, during which time the person is living off of other people, because they are unable to have an income of their own. The person, after waiting 2 years, then gets approved through the appeal process. The back pay is based on the date of application, which means the person then receives a back pay equal to the amount of what the monthly SSI/SSDI income would have been if they had been receiving it all along. Le’s say a person’s monthly income is established at $950.00 per month. The person had to wait 2 years through the appeal process. The person then would get $950.00 times 24 months, or a back payment of $22,800 tax free.

According to the regulations guiding disability income, the person is not allowed to have more than $1,000.00 in savings, and can only receive a monthly income of a formulized amount before their SSDI/SSI income is reduced. In reality, the person who receives a back pay of $22,800 has about six months to get rid of that $22,800. If they don’t spend the money, they lose their monthly income allowance and insurance benefits, and have to start the process again nearly from step 1.

I used to get so angry while at the Samaritan Center, a local food pantry in Jefferson City. The people driving up to get free food would have the latest iPhone, a heck of a nice car, some obviously new designer clothes, and all kinds of other expensive things. Then I realized that these items were probably purchased with their back pay. The way the regulations are set up demand that a person blow thousands of dollars in a very short period of time or lose their long term benefits and end up at square one.

Then I began to feel badly for these people. In about a year, that really nice car would be rotting in a parking lot because the person would not be able to afford the long term costs of maintenance, insurance, licensing and gas to keep the car running. If they sold the car for what it is worth, they would have to report that money as income, and then have their monthly income and insurance benefits cut. That iPhone would be disconnected in 6 months to a year with a back balance on the phone bill that the person would be unable to pay. I would visit people’s homes as a case manager and see a brand new 57 inch LCD TV, surround sound, and the latest and greatest video game console on the market. When I realized these items were probably purchased with SSDI/SSI back pay, I realized that in 6 months to a year the person would have very fancy paperweights, because they would be struggling to keep the electricity turned on in the home.

The question could be asked why someone wouldn’t spend this money on buying some cheap property, for example a mobile home. The reason is because any property related to housing, a mobile home, a house, is considered an asset that is taken into consideration when a person has benefits renewed. In other words, if a person owns his or her own home, his or her benefits will be reduced, because the government considers that he or she could sell their home to pay for some things themselves.

People are paid these large amounts of money, and then told that if they use it responsibly, put it in savings for the future, plan for retirement, buy a home, or use it systematically over a long period of time, they will lose their meager income and insurance benefits and ultimately end up in a worse situation than they were in before the back pay is awarded. The system is designed to keep people from being able to save.

Another example of how the system is designed to keep people in poverty despite the intent of “helping people better their situation” is in the way the government manages the insurance benefits. The insurance benefits that people receive are based on their level of income. A person can have an income at a level that exceeds the amount that Medicaid/Medicare approve. In this case, the person is assigned what is called “a spend down”. In other words, the person does have Medicaid/Medicare insurance, but is assigned a formulaic price that could be considered a copay for their healthcare costs. Sounds reasonable, right? The devil is in the details.

The threshold at which a person would start paying copays (known as “spend downs” in the Medicaid/Medicare system) is roughly $750.00 to $800.00. So let’s take our example of the person above, who is awarded $950.00 per month in SSDI due to a disability the person sustained. He must spend out of his own income $200.00 per month on medical costs before Medicaid will pay for any of his medical bills. This reduces his monthly income to $750.00. The copay is based on whatever amount a person receives over the threshold limit. I worked with a couple who had a monthly income of about $3,000.00 between them. He had a long military history, and received military pension, but was disabled not related to military service. She was disabled, as well, and received SSI income, because she had no work history, having been a military wife and stay at home mom throughout her adulthood. Their monthly Medicaid/Medicare spend down was $2,250.00 per month. That’s how much they would need to pay out of pocket before Medicaid/Medicare would cover any medical expenses every month. People are disincentivized from making more money than the threshold limit, because they know that any medical costs are going to drop them to the threshold limit, and they will be in the same position.

Now, take our person who is disabled and is already required to pay $200.00 per month in his medical care for medication that makes him stable enough to be able to work. If he were to go to work and make over a certain amount of money, his monthly income would be reduced based on how much money he is making. There are limits to how much monthly income a person can make and still receive their income benefits. With these limits, people are disincentivized from making more money and improving their situation, because they wouldn’t be able to afford the healthcare costs that keep them stable enough to work to improve their situation. They are trapped. They can continue in a poverty level of care with government benefits in order to stay emotionally and physically stable. That’s Choice A. Or, Choice B, they can work hard, bring themselves out of the poverty level of existence they experience with government benefits, but lose the ability to afford the very things that have made it possible for them to succeed, the necessary things like medication, medical care, counseling, and other supports provided through insurance.

The intent of the system is to give people the necessary things they need to better their life situation. The design of the system, however, keeps people in poverty and makes them fearful of success, because they would not be able to continue to provide for themselves the very things that have made them stable and able to succeed. It is a problem in the design of the system.

I want to say something quickly about the recent legislation requiring drug screens in order to maintain benefits. I supported this legislation…initially. My thinking was, I have to be drug tested for my job. If I were to come up positive on a drug screen, I would lose my livelihood. So why shouldn’t those who are on government benefits need to submit to drug screens, as well, right?

This sounds perfectly reasonable, until you consider that one thing that people addicted to drugs are really good at is urine diversion to beat drug screens. This is going to be a monumental waste of resources by the government. In order to ensure that urine is not diverted to beat these drug screens, the people would have to submit to observed drug screens, saliva tests, or hair follicle tests. There will have to be people paid by the government to do this. It will have to happen in semi-sterile, laboratory settings that will include the cost of managing and disposing of biohazard material. It will involve tax payer dollars covering the cost of testing and processing the drug screen samples, whether it be urine, saliva, or hair tests. The cost of the drug screens, which will produce false results because those using drugs know how to beat the drug screens, will outweigh the benefit to society that the intent of this practice is meant to accomplish. Once again, the intent, to make sure that those receiving government benefits are not using those benefits to obtain illicit substances (“I don’t want my tax dollars used to support somebody’s crack habit.”) is a good intent. The problem is in the design. The design creates a greater expense of time, money and resources that requires tax payer dollars, and will not produce benefits that will outweigh the cost. It won’t work, but at least it’ll cost a lot of money. Typical government logic.

The amount of money people are awarded for SSDI/SSI is minimal. It is a cost of living income. The low amount of income, when we hear it, sometimes makes us gasp. We hear that a person receives only $694.00 per month, and we feel awful that this person has so little to meet his or her needs. One thing we need to understand is that while people who receive SSDI/SSI may only be receiving $694.00 per month, all recipients of SSDI/SSI are automatically qualified for Medicaid, and eventually Medicare. At this low income, they are below the threshold for having a spend down, and so all medical care (excluding minimal amounts for prescriptions, which usually have a $0.25 to $0.50 copay), is free. They don’t pay for their insurance, nor do they have to pay copays for doctors’ visits. This low amount o f income also qualifies them for housing assistance.

The way housing assistance works is that they are allowed to have a pre-approved apartment, with the cost of rent subsidized by the Housing Authority. They get rental assistance, and only need to pay a fraction of what the actual cost of rent is. Their payment portion is determined on a sliding scale basis, which considers their income and other expenditures, like car payments, telephone payments, electricity and utility bills, etc. The cost of rent of people with whom I’ve worked in my years as a case manager ranged from $0.00 to $125.00. The only people who had to pay more were people who had been disqualified from receiving housing assistance for various reasons (felony conviction or failure to meet their obligation of their portion of rent in the past are 2 reasons why someone may be disqualified). For the vast majority, the rent is a small portion of their income.

Due to low income, many of the individuals with whom I worked were also eligible for utility assistance if they were in a private apartment from various programs like the Community Action Centers. In public housing, utilities are included. Now here’s how this worked. The people with whom I worked did not actually have to pay their utility bills in order to be eligible for rental assistance from Housing Authority. They only had to show how much their utility bills cost. So a person would get subsidized rental assistance based on the amount of their utility bills, then go to Community Action Centers and other organizations to get money to pay utility costs. In other words, they were getting assistance based on a bill that they would not have to pay. My clients were masters at understanding all of this, and used these kinds of design flaws to their benefit. Who wouldn’t? I know when Lesley and I fill out our taxes, we look for every loophole we can find to get as much back from the tax system as we can. These people on assistance were doing the same thing, just in a different system.

The majority of people who receive SSDI/SSI are also eligible for EBT cards, colloquially known as food stamps. There are a large number of food pantries to which people of low income have access, as well. I worked with my clients on learning to use their EBT cards for purchases when they received them. The cards were awarded money at the beginning of each month. We would, at the beginning of each month, develop a grocery list of items they would need for about 2 weeks. They would buy these 2 weeks worth of groceries. At the beginning of the 3rd week, we would visit the various food pantries in the area, which usually provided about another 2 weeks worth of groceries. A person could eat for a full month, and never pay anything out of his or her own income, unless it was an item that they decided they wanted in the middle of the cycle we had developed.

The bottom line is, when we hear that people are receiving very low amounts of income in SSDI/SSI, we need to remember that for the majority of people receiving SSDI/SSI, their income is mostly disposable. “Disposable income” is that money we have each month that is not “earmarked” for bills, house payments, medical costs, and other necessary expenses. It’s basically the amount of money we have to blow on whatever we want. The majority of their money is disposable because the government assistance programs in their various forms are designed in such a way that they provide most of the necessities of a person’s life. I worked with several clients on budgeting, looking at their monthly bills. After working with several of them, and coming to an amount of disposable income each month, I went and looked at Lesley’s and my income. When I was doing this social service work, I realized that my clients had more disposable income per month than Lesley and I did, even though our monthly income was 3 to 4 times the amount of my clients’ incomes.

The entitlement or social assistance programs are noble in intent. We all want to help people who are struggling. By design, these systems do not help people in the long run. By design, these programs do meet people’s immediate, basic needs for housing, food, warmth, and medical care. By design, however, once someone enters into the social assistance programs, it becomes harder for them to get out. They are punished for using their finances responsibly by saving for the future or buying a home. They are disincentivized from working because if their income exceeds the threshold amounts, they lose the very supports that have made them physically and/or mentally stable enough to work. The systems are designed to allow people to double dip in benefits to maximize the disposability of their monthly income. The design of the system is highly flawed.

If social assistance programs are going to work, it is going to take a systemic change in the way they are designed. The systems will need to be designed in such a way that a person is rewarded for being responsible with their money. The systems will need to encourage people to work. Working is not a curse. The clients that I felt did the best in recovery were the ones whose benefits were low enough that they could obtain employment where they worked 10 to 15 hours per week (which, because of their low benefits, would keep their income below the threshold limit). It gave them a sense of purpose and accomplishment, and did wonders for their self-esteem.

The entire system needs to be changed. Currently, nearly 46% of the population of the United States is receiving some kind of entitlement benefit. This is unsustainable. We will be bankrupt as a nation if we don’t change the system. I want to help those who need help. I don’t think a government run system is the way to help them.

Radical Acceptance

So many people have made comments to me about how strong I am for the way I am dealing with Nathaniel’s illnesses (his hemophilia and lung problems). They’ve said the same things to Lesley. The difference is, though, that she really is strong. Me? Well…
I’m just too weak to fight with it.

Nathaniel is very sick. Even as I type this, he’s back in the hospital due to his heavy congestion. Maybe he’s not quite over the cold that sent him to the hospital last week. When we catch a cold, our lungs produce mucus that we expel to push the virus causing the cold out of our bodies. Nathaniel’s lungs, for whatever reason, are not expelling that mucus. The mucus builds up and builds up and builds up and slowly causes his lungs not to work in keeping his blood oxygen saturation at a healthy level. Dealing with this is not strength.

I’ve stuck Nathaniel on 2 different occasions, and plan on doing so again soon. I mean that I’ve put the needle into the subcutaneous port in order to infuse the blood clotting factor. I did the whole process from wiping the counter down with Clorox disinfecting wipes to make the area sterile to putting on the band aid to throwing everything away when we’re done. This is not strength, either.

I’ve had to explain to Jacob and Caitlin on many different occasions why they cannot jump on the bed or on the floor or on the couch next to him. If they were to trip and fall on him, it could cause an internal bleed that could kill him. Not strength.

What is it then?

I think I call it acceptance. This is what we do now. We take Nathaniel to the hospital when he can’t breathe. That’s just what we do. We give him his blood clotting factor. It’s a shot 3 times a week. We balance keeping him safe from his very active brother and sister with trying to make sure they know that they can touch him, love on him, and have fun with him. That’s our daily lives.

It doesn’t take strength, unless it’s the strength of acceptance. But really, accepting reality doesn’t take a heck of a lot of strength either. I’ve always found fighting reality is a lot harder than accepting it. This is kind of my approach to exercise really. I know the dumbbell’s heavy. I can accept that and move on. I don’t need to lift it to know it’s going to be hard to lift. Lifting it takes strength. I’m a very weak, out of shape person, but I accept that.

I know that it’s going to be hard to cope with Nathaniel’s illnesses. Fighting with illness takes more strength than accepting that it’s going to be hard. So often we compound our own difficulties by thinking that life should not be difficult, or wondering why this is happening to me, or grumbling about the fact that life is unfair.

Life is hard enough without making it worse by feeling bad about the fact that it’s hard. Getting angry about the fact that life is hard won’t really help the situation, either. The first of the four noble truths of Buddhism is that life is suffering. Once we accept that, life gets a little easier; because we stop fighting so much when suffering comes. Actually, it’s one of the first things Christians know about being a fallen human in a fallen world. God told Eve, in pain she would bring forth children. And to Adam, the Lord said, “By the sweat of your brow shall you get bread to eat.” Life isn’t paradise in the garden anymore. We and the world are fallen from that perfect state of creation, so we suffer.

The real trick is to accept suffering. It’s an incontrovertible consequence of our fallen state. We suffer because of original sin. What makes so much conflict in our lives is that we don’t want to accept suffering. That doesn’t mean that if I get sick I should just lay down and die. When I get a headache, I take Advil. I also know that until the Advil really kicks in, my head is going to hurt. Getting upset about that and irritable with those around me is not going to make my head hurt any less.

If I were to get cancer, I would get treatment. I would also accept the fact that I’m probably going to feel like crap from the cancer and the treatment. That’s part of the process. I would also, if it were to come to that eventually, accept the fact that all treatment has been done and there is nothing left to do. I would accept the inevitability of my own death, and make preparations. Getting mad about it; getting sad about it; being a jerk about it is not going to help the situation.

Nathaniel has hemophilia. We accept that. That doesn’t mean we let it go and hope for the best. We provide him the necessary assistance to manage it so that it will be as unobtrusive to his life as possible. We accept that, too. Nathaniel’s lungs are weak. He cannot expel the mucus that builds up in them if he catches a cold. What can I do about that? Getting mad doesn’t change the reality that this dumbbell is heavy to lift. I accept it. Jacob has to wear a patch over his eye for at least 8 weeks. I hope to teach him to accept reality as it is. We do what we have to do to manage reality. Getting mad, embarrassed, shy, sad, or upset is not going to change the fact that this is what we have to do.

In a lot of ways, Nike had it right.

Just do it.

In the end, it brings me back to Job. After losing his children, his livestock, his servants, and everything he had, the Lord then allowed Satan to strike him with an illness causing severe boils. His wife told him that he should just “Curse God and die!” (Man, I’ve wanted to say that to a few people in my time.)

“But he said to her, ‘You speak as foolish women do. We accept good things from God; should we not accept evil?’ Through all this, Job did not sin in what he said.” Job 2:10.

Ultimately, it is not strength that helps me bear up under trials. It is acceptance.

Perfect Love Drives Out Fear

I’ve been thinking of 1 John 4:18 a lot lately. A lot of people are familiar with part of this verse, “Perfect love drives out fear.” That’s not the entire verse, though.

“There is no fear in love, but perfect love drives out fear because fear has to do with punishment, and so one who fears is not yet perfect in love.”

Too often, when things happen like what has happened with my family and Nathaniel, it gets interpreted as a punishment. It was a question that I know has crossed both Lesley’s and my mind, “What did we do to deserve this?” The question, “Why is God doing this to us?” is much like it, often asked out of a sense that God is heaping troubles on us because we did something, even unknowingly, to deserve it. Even the question, "Why would God let this happen?" suggests the idea that God, although passively, has something to do with the cause of our suffering. Many people have that image of God as the punisher, wreaking vengeance for everything in our lives we’ve done that’s wrong.

If we believe that God’s love is perfect, this is unacceptable. In an earlier post, I discuss the biblical Truth that all suffering is a result of original sin. Nathaniel’s hemophilia and lung problems are due to the fact that we are separated from God while we live in this world. They are not punishments from God.

I have no need to fear, because I am doing the best I can to remain in right relationship with the God who loves me. Is my love perfect, as 1 John 4:18 requires? No, but God’s love is. I’ve moved past the being angry at God phase of all that's happened over the last six months. I’d be lying if I said I haven’t been angry with Him. In faith, though, I know that He is the source of everything good that has kept Nathaniel alive. How can I be angry with a God who has been so active, even before Nathaniel was born, in giving us what we’ve needed to enjoy him in our lives?

It wasn't easy moving beyond the anger I felt for what God allowed to happen to my little boy. It took a great deal of faith and reflection. God's permissive will allows suffering, because for him to remove suffering would be for him to rescind his gift of free will. God passively allows suffering, because it is the result of original sin, the consequence of humanity's choice as a whole to separate ourselves from Him. God actively works to be there with us through our suffering, though, so that we can lean on Him for wisdom, awe, reverence, strength, understanding courage and knowledge. (Get that, the gifts of the Holy Spirit). God joins us in our suffering so that we can experience "the peace that surpasses understanding" (Phillipians 4:7).

God has not left us in our pain. God joins us in our suffering. That's the meaning of the cross of Jesus Christ.

Hemophilia is not a punishment. Nathaniel, certainly, is not.

One of the most important things I know as a parent is that my children’s self-concept is formed by my belief in them. If I think of my children as cursed, as their hardships as punishments, their needs as awkward, their quirks as weird, however you want to put it, that’s what they are going to think of themselves. Children do not know what to think about themselves. Whether it’s something as simple as Jacob needing to wear a “pirate patch” because he has anisometropia and anisometropic amblyopia (the doctors' fancy way of saying his left eye sees better than his right eye), or something as complex as managing Nathaniel’s hemophilia, they will form their thoughts about it according to the way Lesley and I think about it.

If we make out that it’s weird and awkward that Jacob has to wear a patch for a few weeks to correct his vision, he’s going to believe that HE IS weird and awkward. I prefer to think of it as kind of cool. He’s got a doctor’s order to be a pirate for the next 2 months. If truth be told, I'm a little bit jealous.

If we think of ourselves or Nathaniel as being punished by God because Nathaniel has hemophilia, even if I never say a word about it to him, he’s going to develop a sense that HE IS a punishment to us, a curse to us. I prefer to think of him as a gift. That’s what he really is.

God gave him to us, and… “If you then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him” (Matthew 7:11). Nathaniel is our “gift from God.”

And so are Jacob and Caitlin.

Perfect love casts out fear, because I don’t need to be afraid of being punished. I don’t love my God perfectly, but I believe in His perfect love. And I believe in His desire to help my love for Him to grow. After all, “God is love” (1 John 4:8). So while I cannot trust that a gene on an X chromosome won't mutate to cause a life long, difficult to manage illness in an infant, I can trust that God will be there next to me and Lesley and, more importantly, next to Nathaniel, for as long as he has to manage it. I can't trust that Nathaniel's lungs will ever be healed, but I can trust that God's breath of life will lift him up for eternity.

Parenting a "Normal" Sibling of a Special Needs Child

Jacob had his kindergarten check-up a couple of weeks ago. Healthy as a horse, of course. He had to get his 5 year old vaccinations, but no big deal. Lesley said he was a real trooper and didn’t even cry. Except a couple of days later when he went up to Lesley and announced, “Mom, I think I caught hemophilia from my shots.”

Jacob has put together shots with hemophilia, because “shots” is the word that we have been using to describe the thrice weekly infusions that Nathaniel needs to receive.

The word “thrice” should be used more often.

It seems to me a very natural connection in the mind of a 5 year old. “Getting shots” is the treatment for hemophilia. If Jacob received shots, he must have hemophilia, too. Since he didn’t have it before he got the shots, but he got shots anyway, then he must have gotten it from the shots. Makes perfect sense.

Jacob’s been the victim of another illness that we’ve called “Hezafaken Syndrome.” The symptoms are being able to breathe out, but not in, itchy spots under his feet, ear wax effusing from the ears, and being so sick that he cannot even muster the energy to run a fever. He’s had this and several other variants on multiple occasions over the last month or so.

Jacob has been more and more protesting that he is sick or that he has some other malady that demands immediate attention.

Caitlin has been showing some interesting behaviors, too. She used to be highly independent. She did not want us to help her do anything. Now, she wants to be carried through the store, sit on our laps at dinner time, drink out of “sippy cups,” and she has been exhibiting all kinds of physical injuries for which she needs band aids, Dora or Disney Princess preferred, thank you very much.

We’ve spent so much time over Nathaniel: the hospitalization, the subsequent pulmonary problems, the bleeds (averaging 2 per week in November) that required all of those hospital visits, the surgery earlier this month and the hospital check-ups since then, and now the thrice weekly (there it is again) visits from April, our home health nurse, to give him the infusions of blood clotting factor.

Jacob actually confessed at one point that he was feeling left out of our family.

I think I know the source of Hezafaken Syndrome. I don’t think it’s hard to figure out Caitlin’s new found clinginess.

Nathaniel’s physical health needs have demanded so much attention from both Lesley and me that Jacob and Caitlin are responding by “being sick,” being needy, reverting to what could be considered a younger stage of development when they are with us. They are increasing their need for us.

Lesley and I have tried to keep them involved. We want them to be around when Nathaniel’s receiving his infusions and breathing treatments. Caring for Nathaniel’s physical health will be a normal part of our lives, and we want Jacob and Caitlin to experience it as just what we do. We’ve even employed them to help out, especially with the breathing treatments where keeping things sterile is not as important (compared to the sterile environment necessary for the infusions). We ask them to help with Nathaniel’s bath time and changing diapers as a means of keeping them involved.

I’ve realized that’s a cop out.

The fact is if we ask them to help us give Nathaniel a breathing treatment or change a diaper or give a bath, we’re still focusing the attention on Nathaniel, not them. We praise Jacob and Caitlin for helping, giving them all kinds of affirmation about what a good big brother and big sister they are. But even that’s about Nathaniel. They’re good because they’re a good provider for Nathaniel. That doesn’t make them good in their own right, good just for being themselves.

That’s not to say we don’t want them involved in these things. We want them to be a good big brother and big sister. We cannot replace the attention they require, however, by only including them in activities involving Nathaniel. One thing we were told when we first learned that Nathaniel has hemophilia is that our lives should not revolve around his illness. It’s very hard not to let that happen, even in the way we parent our other children.

For the past couple of weeks, I’ve been taking Jacob out, just him and me once a week. He’s usually satisfied with going to McDonald’s for supper and then running an errand. We did some Christmas shopping the last time we went out. One on one, just the two of us. Interestingly, his symptoms seem to be abating a bit. We’ve switched his Wii day to the days when April comes. Usually, he can get so focused on the game he’s playing, that we can take care of the infusion and he hardly notices that April is there.

I’ve been spending more time with Caitlin, too. She has preferred my company lately to Lesley’s, becoming something of a daddy’s girl much to Lesley’s chagrin. She wants me to cuddle with her as she goes to sleep at night, wants to sit on my lap during supper, and wants to play Candy Land and Shoots and Ladders with me. I give her as much attention as I can.

Lesley, likewise, has been making more of an effort to meet with and be with Jacob and Caitlin in their own right. This is something about which Lesley and I have talked a lot. We are trying to let Jacob be Jacob, and to know that is pretty awesome. We want Caitlin to be Caitlin, and to know that she is beautiful and good because she is Caitlin.

I want Jacob and Caitlin to know that they are good in and of themselves, not only in their relationship with Nathaniel. Lesley and I want Jacob and Caitlin to know that they are important to us because they are important to us. Lesley and I want Jacob and Caitlin to know that we love them deeply, just as much as we love Nathaniel, not because of what they do for Nathaniel.

I don’t want Jacob and Caitlin growing up with resentment towards their brother because he got all the attention, or believing that they need to be sick in order to get attention themselves.

So, Nathaniel demands A LOT of attention. And we have 2 other beautiful children who need attention, too. And it is very easy to let the 2 other beautiful children “take care of themselves” in favor of Nathaniel’s immediate needs.

This is not an easy problem to solve. It’s one of those that demands moment by moment awareness. It’s one that requires that we as parents be in tune with the subtle (and sometimes not so subtle) cues our children give us. It’s one that requires faith.

I go back to what I wrote in an earlier post. I’m becoming more and more aware of my own inadequacy as a parent. I don’t know what my children need all the time. So I walk by faith. I believe that God will guide Lesley and me. I believe that God has given us all 3 of our children as beautiful gifts. I believe He will not abandon us to walk this road alone.

Lesley and I know that we need to address Jacob and Caitlin as Jacob and Caitlin, not merely as Nathaniel’s big brother and big sister. Doing that, with Nathaniel’s special health needs, is very hard, time consuming, and sometimes exhausting. Jacob and Caitlin are worth the effort, though.

I mean, they’re a couple of pretty freakin’ awesome kids.

I Never Want To Go Through That Again

During Nathaniel’s hospital stay, we had a very frank conversation with Dr. Acton, Nathaniel’s pulmonologist, about the possibility of Nathaniel having Cystic Fibrosis. The symptoms of CF are: 1. very salty tasting skin, 2. persistent coughing at times producing phlegm, 3. frequent lung infections like pneumonia or bronchitis, 4. wheezing or shortness of breath, 5. poor growth/weight gain in spite of good appetite, 6. frequent greasy or bulky stools, or difficulty with bowel movements, and 7. small growths in the nose called fleshy polyps.


Of those 7 symptoms, Nathaniel has 5. When he exerts himself, he sweats profusely, and his sweat is so salty that when it dries, it actually leaves a filmy residue on his skin. Salty skin. He coughs incessantly. He has had lung infections, considering the severe pneumonia he had a couple of weeks after his birth that caused his lung to collapse and the ongoing breathing issues with which he’s struggled. His wheezing sometimes is so loud that it can be heard from another room in the house. He’s a tank, so number 5 is ruled out. He doesn’t have so much the greasy, bulky stools, but he has very difficult bowel movements, and at times will go up to a week without pooping.

When we had the conversation with Dr. Acton, I could see the concern on his face, especially after I mentioned to him that his sweat seemed excessively salty to me. He told us that he would be tested the following morning with the golden measure “sweat test.” If Nathaniel’s sweat were excessively salty, that would be a positive test result.

I went home that night and researched CF. Nothing I read filled me with a lot of confidence. By 11:30 pm that night, I was so worried about this that I was literally physically sick. I went into the bathroom, threw up, and then I wrote the following:

I guess I'm preparing for the worst. Not really hoping for the best. I will not be surprised if the test comes back positive.


There was a time when a person with CF would not be expected to make it to kindergarten. Medical advances and better treatments have extended CF patients' lives into their 30's, sometimes early 40's. It depends on the severity level. Today, 45% of all people with CF are 18 years old or older. These statistics and information all came from the Cystic Fibrosis Foundation's website.


I'm beginning to think about what it will be like to have to bury my son. It might not happen for 40 years, but there is a level of certainty that comes from my gut that I will watch my son die.

After that last sentence, I could not write anymore.

Needless to say: I was a wreck that night.

I never want to go through that again.

But the reality is Nathaniel has severe hemophilia. Even with the factor infusions that he’s going to receive, there is no guarantee. A trauma (like a minor car accident) that might just mildly injure someone could cause in him a bleed severe enough to kill him. Teething could cause severe bleeds. He’s got 2 very active older siblings, with whom he’s going to try to keep up as they climb and jump and fall and sword fight with baseball bats. One good whack to the head could do him in.

There’s still a good chance just with the hemophilia that I will watch my son die.

I could say, “Been there, done that.” The night of July 3 to the morning of July 4. I have no doubt that night that Nathaniel could see the angels gathering around him to welcome him to heaven. We got to the ER before midnight, and it was 4:30 or 5 in the morning before we were told that our little boy was going to live. I’ve had nightmares about that night.

The Sunday immediately after that night, there was a baptism at Church. I dreamed that night that the baby that was baptized at Church was dead.

I have nightmares about it still.

I never want to go through that again, either.

But what do I do with this ongoing fear that Nathaniel will die before I do?

Why is it so different than the knowledge that my grandfather has terminal cancer? When I think about my Papa going to meet the Lord, I’m hurt, but I’m at peace. I’ve said all the things that I feel like I’ve needed to say. Our relationship is fulfilled. He knows that I love him and I’m at peace with his journey.

Maybe it’s the fear of the loss of the possibilities. Nathaniel’s life could be gone in 80 years, or it could be gone tomorrow. That doesn’t make him all that different than anybody else, really. Nathaniel forces me to look at the reality that life is fragile.

We, all of us, hang by a thread to things that could be gone to us in the blink of an eye. How empty the pursuit of these earthly things seems to me. How futile. What a monumental waste of time to spend our efforts and energy on anything other than that which will endure for eternity. “Do not store for yourselves treasures on earth, where moth and decay destroy, and thieves can break in and steal. But store up treasures in heaven, where neither moth nor decay destroys, nor thieves break in and steal. For where your treasure is, there also will your heart be.” Matthew 6:19-21.

And yet, I’m confronted by the practicality of living this life. If I give up the useless phone conferences at work over the changes they want to make in our client documentation computer program, I’d lose my job. Useless to the pursuit of the spiritual and eternal, but necessary if I’m going to put food on the table for my family. Providing for my family, though, is spiritual and eternal. I’m fulfilling the vocation to which God has called me as a husband and father.

In this context, the mundane, seemingly useless things in life become highly important. I sacrifice out of love for the greater good of my family this time and these efforts on activities that are mundane, useless, boring. By making this sacrifice, I provide for my family, and thus fulfill my spiritual calling.

It is in what we sacrifice here on earth that we store up our treasure in heaven.

Odds are that I am going to have to bury my son someday. God, please, if that time comes, please help me to offer him in a spirit of sacrifice, so that he will be among my treasures when I enter into eternity.

But, God, honestly, I never want to go through that again.

How Government Intrusion Hurts Small Businesses, Consumers: A Case Study

I don't know if it's really a case study, but it's a catchy title.

I've been noticing a lot more gas stations and other places putting up signs that say things like, "$0.35 charge on all debit/credit card purchases under [a specified amount]." I've also seen, "Cash only for purchases under [again, a specified amount]." I've been wondering what the heck's happening. Well, I got some information that makes it all clear.

Earlier this year, the government passed legislation aimed at "levelizing the playing field" regarding Visa and Mastercard. Basically, the law, which took effect on October 1, 2011, capped the amount of money that Visa and Mastercard are allowed to charge businesses for the use of their product, the credit and debit cards we have all come to know and love. The idea was "to protect" businesses from being gauged by Visa and Mastercard.

Well, Visa and Mastercard responded. These companies had been in the habit of giving discounted rates to small businesses like quick stop gas stations and coffee shops, beauty salons, privately owned restaurants, etc. When Visa and Mastercard could no longer charge the amount to big businesses like Walmart and McDonald's that they had been charging, they needed to make up the lost revenue to maintain their operating costs, so they discontinued the discounts they offered to small businesses. Now every business, whether it's a small coffee shop or McDonald's McCafe, Walmart or the local family owned grocer, have to pay the same percentage on every purchase.

Small businesses are now being forced to pay more to Visa and Mastercard than they were paying prior to this law taking effect. So the small businesses have to adjust in order to make up their lost revenue (the extra money they are now having to pay) to maintain their operating costs. So the small businesses are passing along this cost to the consumer, either by charging a fee or only accepting cash for small purchases.

Consumers don't like this. I don't like it. Why should I have to pay more money to use my money? So consumers are not going to small businesses anymore. They are going to McDonald's for their latte's (which you know is a desperate thing because McDonald's lattes suck). They are going to the big grocery stores when they just need to pick up that gallon of milk. They are going to big businesses, who can afford the loss on the credit or debit card purchase.

This is a perfect example of how government intrusion into the free market actually hurts small businesses and, ultimately, you and me as consumers. We seriously need to think about where our government is going, and who we vote into leadership. I'm becoming more and more libertarian.

I'm also standing more and more firmly with Henry David Thoreau:

"I HEARTILY ACCEPT the motto, — 'That government is best which governs least'; and I should like to see it acted up to more rapidly and systematically. Carried out, it finally amounts to this, which also I believe, — 'That government is best which governs not at all'; and when men are prepared for it, that will be the kind of government which they will have."

The less government intrudes in our lives, the better we will all be.

Treatment Is A Partnership

If you’ve followed on facebook, you know of my experience at the urgent care facility. Nathaniel was having a pretty severe leg bleed, and our hemophilia doc decided he really needed multiple infusions over a couple of days. He received his first on Saturday. Once again, shout out to our dear friend Erin for her support that day.

Nathaniel is a hard stick, as far as IV’s go. The poor kid has been pricked and poked and punctured so much, that finding a vein that isn’t scarred or doesn’t collapse when they get the needle in is very difficult. This means that he usually needs to be poked multiple times in multiple veins before they get an IV that’s usable. Once he gets the IV, it’s usually a pretty quick process. It takes longer to find a vein and get him stuck than it does to give him the clotting factor.

So he gets the clotting factor on Saturday, which we were able to do at home (barely). The bleed didn’t get larger, but by Monday morning, it hadn’t shown any signs of reducing in size either, which is the indicator that the bleed has actually stopped. This isn’t unusual. Depending on the severity of the particular bleed, sometimes it takes multiple doses of the clotting factor to stop it.

By Monday, late afternoon, Lesley and the hemophilia treatment team decided another dose would be beneficial. By then, it was too late to get Nathaniel into the Hemophilia Treatment Center (HTC, for short), so she needed to take him to the urgent care at the Women’s and Children’s hospital. No problem.

She drives up. They admit him. It takes a few sticks, but they finally get the IV in a vein. They give him the clotting factor. Lesley and Nathaniel come home. It really should be that simple.

Tuesday, Lesley is in communication with the hemophilia treatment team. The bleed in his leg seems to be getting better, but not much progress, so they decide one more infusion. Once again, by the time they make the decision, it is too late to get him into the HTC, so back to the urgent care we go.

I called on my way, stating that the hemophilia doc wanted an IV run so that he could get another dose of the clotting factor. “We’re expecting you,” they said, “your wife called earlier saying you were bringing him.” Cool, this should go pretty easily.

We get there around 5:30. It took 4 sticks in 4 different veins, but on the 4th stick they got him in a vein in his ankle around 5:40. They taped it up. It was actually time for Nathaniel to receive one of his breathing treatments, so the urgent care doc took a listen to his lungs, agreed he needed one, and gave it to him. Wow. That was easy. We were waiting for them to come in and give him the factor. I mentioned to the nurse that Nathaniel has a history of digging out his IV’s, especially the ones in his feet and ankles, by rubbing his other foot against them until they come out. I told her that we needed to give him the clotting factor fairly quickly before he got it out.

“Oh,” she said, “it’s taped up too well. He won’t get it out.” That was at 6:00.

The doc came in to check on us. I told him that Nathaniel in the past has gotten his IV’s out by rubbing his feet together, and that we needed to get the clotting factor in quickly before he dug out the IV.

“He won’t dig it out,” the doc said, “it’s all taped up.” That was at 6:30.

Let me interrupt for a moment by describing Nathaniel’s desire to get his IV’s out of his skin. We went to the HTC when Nathaniel was having his thigh bleed. He was going to need multiple infusions for that one, so they decided to leave the IV in overnight. They taped all the way around his foot, where the IV was, then wrapped wash cloths around it, and taped those around it, as well. It was basically a cast on his leg.

The little bugger dug his feet together, kicked his leg like a horse, and dug his feet together some more, until sometime in the night while we were sleeping, he had gotten through the taped wash cloths, through the taped gauze, and through the tape around the IV, and dug the thing out of his foot.

He doesn’t like having IV’s in his body.

The doc at the urgent care told me he wasn’t particularly convinced that Nathaniel needed the factor, and that he wanted to confer with Dr. Gruner (the hemophilia doc) before giving it to him.

HE HAS THE IV!!! WHAT THE HELL?!!!

Let me explain: Giving clotting factor to a hemophiliac is not going to hurt him. As a matter of fact, if it isn’t needed to stop a bleed, then it actually works as a proactive preventative measure.

Give him the freakin’ factor so we can go home.

So we’ve been there an hour at this point with a needle in my boy’s ankle. The doc doesn’t want to give him the factor because he’s not sure it’s necessary. I wanted to ask the doctor how often he has to manage a hemophiliac’s healthcare, because I have to do it daily. While I know the doc has a heck of a lot of knowledge that I don’t have, this is one area where I think I may actually know more than the doc.

Another nurse comes in the room. Same exchange. Me: We need to do this quickly, blah, blah, blah. Nurse: He won’t dig it out, blah, blah, blah. This was at 7:20.

7:30, we’ve been there 2 hours, 1 hour and 50 minutes of which Nathaniel’s had a needle in his ankle. I had covered him with a blanket to keep him warm. He gives a nice hard kick and…

Blood everywhere.

I swore as I swung open the door, then I yelled down the hallway because there wasn’t anybody in sight, “He got his IV out and there’s blood all over everything.” Then I went back to Nathaniel and grabbed the blanket to hold pressure on the IV site to try stop the bleeding.

A nurse came running, one of the ones I had told earlier about him digging it out if we didn’t act quickly. Not an apology. Not an, “I’m an arrogant butthead who doesn’t listen to my patients.” Nothing. She goes to work cleaning him up as I continue to hold pressure on the IV site. The dose of clotting factor he had gotten the day before was apparently working, because after several long minutes of pressure, the bleeding at the IV site finally stopped.

They called back the nurse who had gotten the vein 2 hours ago. I told him I was pissed. I told him that I had warned them that he would dig it out if we didn’t give him the factor quickly. He didn’t really say anything.

3 more attempts at a vein somewhere on the little guy’s body, and on the 3rd try they got him in the hand. They got the IV in, gave him the factor, and told us we were ok to go home now. From when the nurse came in to stick him again to when they told us we could leave took about 15 minutes.

Unbelievable.

I work in the mental health/substance abuse side of health care. I know that there are many times that patients don’t know what they really need to make them better. That’s why we seek out health professionals. Sometimes, we don’t have the knowledge or the insight to know what really might be wrong with us or how to fix it.

But sometimes we do.

Treatment, all treatment whether it’s physical health, mental health, or substance abuse, all treatment is a cooperation between the one receiving treatment and the one providing treatment. That means we need to listen to each other. There is a real arrogance in the health treatment field among providers. Some providers believe that they have all of the answers and the patient needs to sit there and take what is given. This is a bunch of crap.

In Nathaniel’s case, we know what is wrong, and we know how to fix it. We just need someone to run an IV for us. Lesley and I have even been shown how to mix up the factor, get it into the syringe, and administer ourselves. We just need an IV to do it.

If they had listened to me last night, Nathaniel would not have been stuck an extra 3 times. Their arrogance cost Nathaniel the pain of being punctured again, and cost my family valuable time together.

We were warned that we would have to battle with medical personnel about what our son needs when we take him to seek medical help. I thought, “Oh, it can’t be that bad.” But it is. It’s frustrating. It’s painful (for Nathaniel especially, but for the rest of the family, as well, who are going through this with him.) And sometimes, it’s humiliating.

Being a provider of mental health/substance abuse services, I have resolved to be on constant guard against this arrogance in my own approach to my clients. Being a receiver of health services, I have resolved to confront it directly whenever I experience it from my providers, especially when it involves my children.

The Cloud of Uncertainty

I've always been of the opinion that babies were easy. If a baby's upset, it's basically one of three things: either the diaper needs to be changed, the belly's hungry, or the kid is tired. Anytime the baby's upset, you address these three things in order, and you have what is basically a happy baby. Fevers and rashes are the exception, in which case you usually seek medical attention by calling your pediatrician. No big deal, a quick visit to the doctor, administer some meds, and bottaboom-bottabang, you're back to the basic three.

Nathaniel has been a whole other ball of wax.

For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.

We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.

So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.

We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.

By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.

That didn't feel right to us, but what do we know?

We called again later because nothing we did seemed to help or comfort him. Same response.

Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.

The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.

But what do we know?

Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.

Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.

Put all that on the back burner for a minute.

There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.

That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.

I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.

Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?

Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?

Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?

Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?

I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.

Terrified, actually.

I hate that old cliche that "God never gives us anything more than we can handle."

At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.

And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:

It's Him.

In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.

In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.

I am completely dependent on my God.

That's where I should have known I've always been in the first place.

5 Years Later

I was eating lunch recently with my two counselors in the treatment center. They both know that I was a priest and am now a counselor, but do not know the circumstances that led to my transition. After nearly 10 months of working together, one of them finally had the courage to ask, “So how did someone who was a Catholic priest end up as a substance abuse treatment counselor?”

I responded, “I knocked up the organist.”

The other counselor spit out her food laughing so hard and the one who asked the question sat up, straightened her skirt, and said, “Ok.”
She didn’t ask me anymore about it, which honestly surprised me.

I’ve been away from the priesthood for over 5 years now. It’s been a while since I reflected on the fact that I was a priest, and now am not. (At least, in a practical way. I understand that once a man is ordained, it is for eternity, an “indelible mark.” I am not active in ministry as a priest at this time). Maybe it’s time I returned to the subject.

I knew, prior to getting ordained, that I should not get ordained. I can say that with as much certainty as I can say that I’m sitting in this chair. There was that still, quiet voice in my conscience letting me know that I was doing something I shouldn’t have done. So if I had this dictate of conscience, why did I get ordained?

Approval. Affirmation. There’s any number of ways to describe the fundamental motive. I got ordained because I felt by doing that people would like me. They would really, really like me.

I spent a great majority of my life seeking the approval of others. I wanted to be liked, loved. The time I spent in seminary studying to be a priest was when I felt the most affirmed, the most loved. Of course this desire to be affirmed showed itself in a lot of ways. I did some things very well. I wanted to be affirmed, so I was the best at whatever I needed to do. You needed me to preach, I was a good preacher. You needed me to be reverent, I was the holiest looking dude there. I was fairly well organized, so I was efficient; people knew they could come to me get things done. I was good.

This desire to be affirmed also meant that I did some things foolishly, even sinfully. I avoided confrontation, so I was never one to enforce the rules. I loved being the advocate, because I was able to be on your side, as long as you didn’t know that I really wasn’t advocating (because sometimes advocating meant confrontation, and I wouldn’t do that). This also meant that I was seeking affirmation in relationships in which I should not have been. And I hurt, betrayed, and confused a lot of people. I know it. The faces of the people that I hurt still float sometimes in and out of my consciousness.

When I left the priesthood, I sought counseling. I was talking with the counselor about this need for affirmation, and he said to me, “You had congregations, multiple congregations, which was hundreds or maybe thousands of people who loved you? Why didn’t you feel like that was ever good enough?”

It was one of those moments. You know the kind, the moments that hit us with clarity and change who we are. From the depth of my being, I heard my own voice cry out inside of me, “Because they’re not my father.”

My biological father abandoned my family when I was in kindergarten. My step-father’s love was always very conditional. I wanted the approval of a father, and I was seeking it everywhere else. The problem was, no matter how I sought it or from whom I sought it, it was never good enough, because it wasn’t his. This is not a psychobabble-blaming, poor me kind of thing. This was a real insight into a sub-conscious motivation into my aberrant behavior. When I gained this insight, it shed light on so much of what I had been struggling. It's not a blaming of my past or anyone in my past for my mistakes, but a consciousness and acknowledgement of a weakness in my personality that I need to guard against even to this day.

My desire for my father’s affirmation and seeking it from everywhere else made me a chameleon. I could change my colors and fit right in. I could be whoever I thought you wanted me to be in order to get you to like me.

That’s why I got ordained. I felt supported, affirmed, liked, and loved while studying in the seminary in a way that I never felt while I was not in seminary. This carried over into my priesthood. Needless to say, my house was built on sand. The desire for affirmation was not enough to be able to sustain my ministry or keep me faithful.

My relationship with Lesley was different. She was different. I’m not sure what happened. No matter what face I tried to put out there, she saw through it. She was the first person that I had met who could see through me. At least, I thought she was. She saw through the masks I wore, and she was the first person that I ever felt truly loved me for me, which was weird. I felt (wrongly because of my own “issues”) that others would only love or like the “me” I presented. The weird thing was, people did only like or love the “me” I presented, because I would not present the real me. It was a cyclic thing. I was frustrated because I didn’t feel anyone really liked or loved the real me. I never let the real me out there for people to like or love.

For whatever reason, I knew that Lesley loved me, the real me. This is why I loved spending time with her. I couldn’t pretend when I was around her. I had to be me, because she saw through all the pretense.

Our feelings for each other deepened. It sounds immature and cliché, but we fell in love. Being in love is not immature, though. It cannot replace the commitment of actually loving someone. What I’ve known for a long time is that while the feelings of “being in love” intensify and dissipate with the phases of the moon or whatever other influence is happening in my life, I choose to love her. Being “in love” is the romantic, warm fuzzy feelings. Loving someone is the committed choice to be for another. I make that choice whether I am “in love” with her at a particular moment or not. The times when I look at her and am swept away with that romantic feeling are icing on the cake. The commitment to share my life with her is the cake. Both are good by themselves. They are awesome when they are together.

Anyway, our feelings for each other deepened and we acted foolishly and sinfully. I had a conversation with someone shortly after I left the priesthood. This person was asking intimate and extremely personal questions about the sexual relationship I had with Lesley. This person wasn’t the only one who wanted details, but was the only one who came right out and asked me. I found that both Lesley and I became the centerpiece for gossip in Jefferson City, the (gossip) capitol of Missouri.

For some reason, people felt they had a right to know that information, and when they couldn’t get it from the source, they made it up. It’s no secret that our relationship was sexual. Lesley conceived Jacob. I can’t really hide that fact. Don’t expect to get any tawdry details of it though. If you’re reading this for that kind of info, you’re going to be as disappointed as if you had picked up Augustine’s “Confessions” thinking it would read like a true crime novel.

It’s been five years since I left the priesthood, but I honestly don’t think of it as “leaving the priesthood.” It’s been five years since I committed myself to the most beautiful woman I’ve ever known. It’s been five years since I started a life of authenticity. I’ve decided that my life shouldn’t be about moving from something, leaving something. Life is about moving toward something. It’s directed and purposeful.

I don’t feel like there is anything I need to hide anymore, nothing I’m leaving in the dark. Over the past 5 years, I’ve been learning to live authentically. Lesley and my kids force me to do that. Lesley always challenges me not to hide things from her. I still have that inclination at times. It’s deeply engrained into my being from my years growing up. That’s really more than I care to get into at this time. Suffice it to say, hiding the whole truth was so deeply engrained into my behavior patterns from my experience as a child that whenever I am in a stressful situation now as an adult, I default into that mode. I have to confront consciously, even to this day, the temptation “to forget” certain details whenever I have to admit that I’m not exactly the way I want to be, or have done something hurtful. Some wounds take a very long time to heal.

Through it all, Lesley and I have held fast to our faith. What else can we do? The Eucharist is the source and summit of the Christian Life. I was with someone on Holy Thursday this past year, and the person asked me why I continue to attend the Catholic Church when I can’t receive communion. I responded, “I know in the depth of my heart that this bread and wine become the real and true body and blood of Jesus Christ. While I may not be able to receive communion at this time, I still want to be in His real and true sacramental presence.” I believe in the sacraments, even though at this time I cannot participate in them. I believe in them completely and fully, having experienced the power of their grace not only in my own life, but in the lives of those to whom I ministered them. The sacraments are why I am Catholic.

I still cling to some of the ideals that I tried to live as a priest. For example, occasionally you will still see me dressed in all black clothing. The clerical garb of the priest, the “blacks,” was originally a sign of priestly poverty. Priests did not get paid for being priests. The only income they received was the yearly Christmas collection. Many priests were poor because of this, so they would buy the cheapest kind of cloth they could afford to make their clothing. The cheapest kind of cloth happened to be black wool, so they dressed in black. They would often wear white, linen undergarments because the wool was so scratchy, and would pull the white linen up through the collar so as not to get chaffed necks. Wearing black became a symbol of detachment from the things of this world. I still wear all black, occasionally, because I am a Johnny Cash fan, but more importantly, because of its symbolic representation of detachment from this world, of spiritual poverty.

One of the most annoying things about being “an ex-priest” are the people who think they’ve found an ally in Catholic bashing. It happens explicitly and subtly. Most recently, we had a social worker come to our house to discuss financial options for managing Nathaniel’s illness. He came with the nurse from the Hemophilia Treatment Center. He began the conversation by clarifying that I am the one who used to be the priest. Then he explained that he had studied in Catholic seminary once upon a time in preparation for becoming a priest. Then he proceeded to tell me that he left the seminary when the Church began clarifying its position against the use of artificial means of contraception. He stated that after studying the matter closely, he could not be ordained a representative of a group who had such a “foolish belief” as this. The arrogance of these statements always amazes me. Somehow this dude thought that his “study” made him wiser than the Church’s 2,000 years of experience of human nature and behavior, and smarter than the greatest theological minds that have lived for the past 2 millennia.

What bothered me the most is the expectation he had that I would jump right in to start talking about how wrong the Church is for this teaching. I stared at him when he brought this up. I refuse to respond to this bait.

There are so many people who, as soon as they hear I’ve left the ministry of the priesthood, think they can start Catholic bashing and I’m going to agree. So allow me to clarify:

I believe in One God, the Father Almighty, maker of heaven and earth.

I believe in Jesus Christ, His only Son, our Lord, who was conceived of the Virgin Mary by the power of the Holy Spirit. He suffered under Pontius Pilate, was crucified, died, and was buried. On the third day, he rose again in fulfilmment of the scriptures. He ascended into heaven and is seated at the right hand of the Father. From thence he shall come again to judge the living and the dead.

I believe in one, holy, catholic, and apostolic Church, which most fully subsists within the Catholic Church, but that finds manifestations among all Christian faiths, and that consists of all people baptized in the name of the Father, and of the Son, and of the Holy Spirit.

I believe that the scriptures are the inerrant Word of God and should be held up in estimation as equal to the Eucharist, the real and true sacramental presence of Jesus Christ in our midst.

I believe in the Eucharist, Reconciliation, and all of the Sacraments of the Church. I believe that while God has bound salvation to the sacraments (specifically baptism), God is not bound by that, and can save whomever he wishes to save by whatever means he wishes to save them.

I believe in an all-male, celibate priesthood.

I believe in being prolife from natural conception to natural death, and that artificial contraception is an affront to God’s will for human sexual behavior.

I believe in the College of Bishops and the Primacy of the Pope. I believe the pope, when speaking from "The Chair of Peter" is able to pronounce infallible teachings on matters of faith and morality.

I am Catholic to the core, despite the fact that I cannot at this time fully participate in the sacraments. My personal situation and my sin, which places me out of union with my Church at this time does not make what my Church teaches false. I will continue to defend her teachings, because no matter what situation in which I am, Truth does not change. I believe in the teachings of my Church, and I want to be reconciled with her.

I am working on that, as well. I’ve applied for laicization, which is to be released from the promises I made at the time of my ordination. I made those promises and committed the sin of blasphemy in them. I’m asking for forgiveness and reconciliation. In my heart of hearts, I am Catholic. I know that there is scandal in my situation, and am seeking to be reunited with my Church. It’s a waiting period now. My request for laicization has been submitted to the proper authorities. Now all I can do is wait for the approval or rejection. Lesley and I will have our marriage sacramentalized in the Church as soon as possible.

So there it is, 5 years out of the active ministry in a nutshell.

I don’t at this time want to hide the fact that I was ordained and served the Church as a priest. I am ashamed of some of the things I did during my ministry. I am sorry to and for the large number of people that I hurt and confused. I ask forgiveness from them and from my Church as a whole.

I want nothing more than to be reconciled so that Lesley and I can again receive communion. We were married because we decided that the stability of even a civil marriage was better than having Jacob grow up with parents who were not married.

In my heart of hearts I know that I can stand before God and say that I have acted rightly within the dictates of my conscience since leaving the priesthood, which is more than I could have said while I was active in ministry.

For the past 5 years, I’ve been living with greater integrity and authenticity than at any other time in my life. And, because of this, I’m happier now than at any other time in my life.

That’s where I am 5 years later.

Anonymous Comments

I recently had someone, despite the disclaimer on the side of my blog that I would not post anonymous comments, post 2 comments anonymously (At least, I assume it was the same person, as they were left on the same article at nearly the same time). I will not post them on my blog. I want to review, however, why.

I will not post anonymous comments for one main reason. I have an expectation that people take responsibility for what they say. The person commented that it seems contrary "to what blogging is about" that I should not allow anonymous comments. I guess that depends on what you think a blog is. For me, a blog is my way to communicate with others. If you want to communicate back, feel free, but take responsibility for what you say. I've had a really, really bad experience in the past with people being able to leave anonymous comments that were insulting, degrading, and downright mean. By commenting anonymously, they can say whatever they want to say and pretend everywhere else to be nice. I have no interest in allowing that kind of interchange on my blog. Respect is my number 1 rule. And it's MY blog, so I'll do with it what I want. If you want your comment posted, attach your name.

The person ended the critique of my decision not to allow anonymous comments with "Weak." I'm of the exact opposite opinion. Weakness is hiding behind anonymity so that you cannot be held accountable for what you say. Real strength is saying what you have to say and letting others know that you have said it.

I can only assume that it was the same person that left the suggestion that I blog about why I'm not a priest anymore. Suggestion noted. I'm not saying I will blog about that, but it is something on which I have not reflected in a long time. I've now been away from the active ministry as a priest for 5 years. Perhaps it's time to return to the subject with 5 years of family experience behind me.

Any thoughts (non-anonymously offered) are appreciated.