A Mixed Bag of Medical Results

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Part of my personal myth is that I was a “miracle baby,” spared from a very early demise by the medical intervention of nurses and physicians, including my uncle Elam, a pediatrician, who hand pumped air into my lungs while being transported to Geisinger Medical Center.  

I had been born premature, suffered from a condition called Hyaline Membrane Disease due to my underdeveloped lungs, suffered a collapsed lung due to my hard breathing, and likely would have died without the advanced care that I received.  I was a fighter, for sure, but my survival would depend on the skilled intervention of medical professionals.

My mother would tell me that story and also use it to remind me that God had a special purpose for my life.  But what she didn’t tell me, until much later, is that my early trauma was actually caused by her doctor who induced labor. 

Oopsies.

My Medical Family

My mother had aspired to be a nurse.  Even worked in a nursing home prior to marrying my dad.  But life, including my sister and your’s truly, changed her plans. 

However, as often is the case, these dreams of parents are sometimes fulfilled by the next generation and sometimes double.  Both of my sisters are employed in the medical field and eventually even my mom found her way into a doctor’s office before eventually playing an instrumental role in the opening of Compassion Parochial Clinic.

My own role in all of this was to be my eldest sister Olivia’s first patient.  Using her Fisher Price Medical Bag, she would check and treat my various imaginary ailments, and had her mind set on being a pediatrician like her well-respected uncle.  And, after graduating high school, then acquiring a biology degree, she continued her education at Albert Einstein College of Medicine on Bronx, NY.

In fact, l feel that I may deserve a partial credit for having attended a lecture on the heart.  Although, I may have missed the second half due to a terrible bout of drowsiness and was not the only one sleeping.  Although, as a courtesy, I will not say whether or not my sister had succumbed.

Anyhow, my younger sister Lilian also picked a medical career, eventually became an RN, continued her education, and is now working on her licensing as a midwife.  Her passion is welcoming babies into the world and is someone with a personality well suited for the job.

All of that to say that this exposure causes me to have deep respect those in this profession.  One way to get on my bad list very quickly is to suggest that those in the medical field are only in it for the money and would deliberately keep people sick to cash in.  Sure, there are bad eggs in every profession, some terrible doctors, but my sisters (like many of their colleagues) are there to help people get well.

That said, having family in medicine also removes some of the aura.  My sisters are far more qualified to give opinions on medical issues than I am and yet they also are still human. 

Doctors make mistakes, they’re fallible like the rest of us, with blindspots and bias.  Plus they’re used to having totally ignorant people, who “did their own research,” challenge them on things they’ve spent years of their life studying, and can become tired of answering these inane statements—appear arrogant.

Physician: “Heal Thyself…”

People have very high expectations in regards to modern medicine.  We’re supposed to go to the doctor and be completely healed. 

But the reality is quite different from that.  Once you get past the buzzing technology and laboratory developed chemical cures, the sterile well lit halls of institutions, our actual abilities are still quite primitive.  Science may have given us better bandaid solutions than were available to our ancestors, yet there really aren’t that many miracles to be had.

My own expectations have lowered considerably after two injuries requiring expert examinations.  

The first, diagnosed as Degenerative Disc Disease, brought me to the office of the renowned neurosurgeon, Dr. Rajjoub.  I had terrible pain, loss of strength and feeling on my right side, my neck was really bad from what my family doctor saw on the MRI.  My parents, after we waited what seemed hours, finally were escorted into the examination room and were full of anticipation.

Having done our own research, knowing the seriousness of my injury, it was quite certain that I would be under the knife soon.  They would open things up, remove the bad, and fix me up better than new!  

The physician strode into the room.  He looked over the charts and images with intensity and then, without hesitation, “physical therapy” and started to turn towards the door.  Stunned, my mom, speaking for the three of us, our mouths agape, “Wait, what?!?”  It was as if he just told a blind man to rub mud in his eyes and was simply going to leave.  He explained further, telling us about the risks of the procedures, how my neck movement would be limited after, and restated his recommendation.

Dr. Rajjoub was right.  After weeks of therapy and further exercise at home, I was able to regain feeling and the use of my right arm.  Sure, I occasionally have painful flare ups and may need the surgery some day, but the doctor had given me the right answer even if it was not the one that I wanted to hear at the time.  Modern medicine has advanced, yet it is our body that still does most of the healing.

A Comical Contradiction

After tearing my ACL I met with an orthopedic surgeon to discuss the options available.  Still active, I expressed my desire to get back in the game and he responded by recommending surgery.  They grafted a part of my hamstring tendon in where the ACL had been and I spent the next few months becoming good friends with Rob and Bob at Keystone Care Physical Therapy and impressing the old folks there with my vertical leap.

Unfortunately, after a year of intense rehab, I was playing basketball and reinjured the repaired knee.  So I went back to the orthopedic surgeon for a consultation and his advice?  He suggested that maybe I slow down a bit, that I was no spring chicken anymore (a paraphrase) and should probably avoid strenuous activities.  Excuse me?!?  I had thought I went through the surgery and physical therapy so that I could actually use the limb, right???

But that’s typical of a doctor’s advice.  He was trying to minimize the risk of my reinjuring my knee, to cover his own butt, and could I really expect him to say anything otherwise?  To tell me to go full throttle again?  I can understand why he would urge my caution.  And still I can’t deny being disappointed.  My thought had been that this surgery would allow me to pick up where I had left off and instead I got a cease and desist notice.

The Undiagnosed Nightmare

I’ve reconnected with an old school friend.  I rode the bus with him for many years and we shared a first name. 

It is quite astounding, actually, how we got reconnected.  That being a story for another time.  But one thing memorable about this old classmate is how he was always complaining about pain in his feet.  At a younger age I had thought of him as being weak or a whiner.  He had been diagnosed as being flat-footed.  

However, it was a little clearer that there was something more seriously wrong when, in middle school, a fall, after a playful shove in the hall, resulted in a broken hip.

Anyhow, at our one-on-one reunion he would let me in on his the true source of his suffering and something that the medical professionals had missed.  Something that doctors had initially told him was all in his head, that the genetic department of an area research hospital refused to even test,  turned out to be Fabry’s Disease, a rare genetic disorder where the body is unable to produce a particular enzyme, which means the body is unable digest certain proteins, and is a death sentence if not properly treated.

He had gone through hell.  A breeze on his skin felt like torture.  They had treated him with addictive painkillers that basically turned him into a junkie.  And his proper diagnosis came from an uncle who read a story about someone with similar symptoms, a revelation that prompted my friend to demand the diagnostic tests for the genetic disorder and only then did he finally receive the necessary treatment.  The medical system had both failed and saved him.

The Miracle Hoped For…

Then there’s my cousin Uriah.  Nothing, not the most advanced treatment in the world, could save him.  The prognosis was never good, Synovial Sarcoma, but I held on to the hope that some new cure might come along, some miracle might happen, and he would survive.

It was hard to watch.  First after one round of him taking poison, called chemotherapy and the only thing that will keep the corrupted human cells called cancer from growing, they decided that he would need to sacrifice his leg.  This Uriah and his family did everything they could, he received top notch medical care at Walter Reed and elsewhere.  But there was not much that could be done for him.

The limitations of modern medicine is a bitter pill.  And those seeking ‘alternatives’ do not fare any better if diagnosed with an aggressive form of cancer.  I know many strong-willed individuals, in partial denial of the graveness of their condition, who traveled to places like Mexico for some kind of breakthrough treatment and suffered the same fate.  Better technology may come along soon and yet disease and death is as natural as health and life.

There is a myth, popular in some circles, that if a person eats right and exercises they will be rewarded with long life.  Uriah was one of the most fit and disciplined people I know, there was nothing he could have done better, he was dealt a bad card.

Having Correct Expectations

We see the headlines, “The third-leading cause of death most doctors don’t want you to know about,” discussing medical mistakes, like this one:

“In 2002 James lost his 19-year-old son after he collapsed while running. He had been diagnosed with a heart arrhythmia by a cardiologist a few weeks prior and was released from the hospital with instructions not to drive for 24 hours.

“His death certificate said he died of a heart arrhythmia,” he said, but my son really died as a result of “uninformed, careless, and unethical care by cardiologists.” He explained: “If you have a patient with heart arrhythmias of a certain level and low potassium, you need to replace the potassium, and they did not. And they didn’t tell him he shouldn’t go back to running.” Communication errors, he said, are “unfortunately very common.”

What is left out of this story is that a century ago he would have simply died from the arrhythmia. 

In fact, only half a century ago my great-grandfather died, a middle-aged man, of a heart attack because there were no surgeries widely available. 

So, truly, modern medicine is a victim of it’s own success, things have improved so much from the time when many people died of many diseases, even at a young age, that we now expect perfection.  Our ancestors, not too long ago, would have no treatment options, whereas we demand answers when the treatment fails.

Those who expect too much will be the most sorely disappointed.  Those who expect to be saved from suffering by science will some day be faced with a harsh reality and, likewise, those who believe that there’s a cure for cancer being withheld are equally delusional.  This idea that we have complete control, that there should somehow be a cure for everything, is a product of our success in medicine and also ignorance of what this success actually means.  

Sure, some of us, like my grandpa, may have died on multiple occasions had it not been for medical advancements like Penicillin, prostrate surgery and pacemakers.  But, even now, with the great progress we’ve made, we’re still all eventually going to wear out.  Our bodies have a shelf life and all the intervention in the world isn’t going to do much to change that.  Eat healthy, exercise enough, avoid getting hit by a truck, and you might see eighty years, maybe more if you have good genetics.  But we won’t live forever.

So, before we become too critical, rather than only dwell on the failures, we should look at the advancement and appreciate the success.  Results will always be a mixed bag, even those who have received the very best care, men like Steve Jobs, do not live forever nor will you.  Even Lazarus, brought back to life by Jesus, eventually died.  And my friend, the one with the missed diagnosis, would long ago have joined Lazarus had it not been for modern medicine.

Missing Mennonites and Misallocation of Care

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I recall my tears shed after the Nickel Mines school massacre, an incident where a man decided to take his disgruntlement out on some Amish girls, shooting them in the head one by one, before taking his own life. They were targeted, no doubt, for their innocence and vulnerability, what normal person would not be deeply troubled by such horrendous thing?

My emotion was wholly appropriate, especially for someone living in Lancaster County at the time, and yet was quite a bit different from my response to other very similar incidents. For example, when a deranged individual slaughtered dozens at Sandy Hook Elementary School, I did not shed a tear. I can’t tell you exactly why that is, it was very similar to the public school that I had attended and a child is a child, but somehow I was simply more removed from the tragedy and had to contemplate why I would value the Amish girls higher than those other children.

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Of course, the key to understanding this is my identity: 1) I was born and raised Mennonite, 2) the Amish are the slightly more peculiar religious cousins of Mennonites and, 3) as someone with an Amish surname, they are actual (albeit distant) cousins in my case. Sure, I had never met those girls nor did I know their particular families, but I could certainly identify with their culture. I could see something of my own childhood, of my family and of my religious identity in them, I mourned my own loss of innocence as much as their suffering a terrible evil.

Sandy Hook, by contrast, while tragic and as terrible, involved people who were less connected to me and thus my reaction was more muted. It just was not as personal to me and therefore I did not feel the same depth of pain. Had I known a child in the school my reaction would have been quite a bit different and perhaps a bit more like the day the child of a close friend died—that is simply the reality of our limited human perspective: One death, if it is made personal to us, will overrule the millions worldwide who have died in similar circumstances.

“A single death is a tragedy; A million deaths is a statistic.”

For Better Or Worse, Nobody Loves Everyone

Many Americans, back in the days when bumper stickers were more common, had “God bless America” message stuck to the backs of their automobile. It was one of those ways a person could show their care for all of their American neighbors and regardless of party affiliation, religious identity, country of origin or gender. Nearly all reading that message (given that it was displayed on American soil and not shared worldwide) shared that same identity and thus should have felt equally blessed by the message.

However, there is that small, but hyper-competitive segment of the population, who (like Topper in the Dilbert cartoon above) simply can’t appreciate what other people appreciate and are determined to outdo their neighbors with their superior virtue. It is that spirit that seems to be behind the bumper stickers in retort to the “God bless America” variety, and proclaiming with great piety: “God bless the whole world, no exceptions!”

Of course, that “no exceptions” part at the end is necessary in case their less sophisticated neighbors, who only expressed love for those actually present and able to read the message, wouldn’t catch the drift.

It has made me wonder, does that same person never tell their spouse or significant other that they love them specifically?

Wife: “I love you, Barry!”

Husband: “I love all women, including you!”

Nothing smug or sanctimonious about that, nope, nothing at all demeaning of the other person either, it is simply a man with a far bigger love than that which can be exclusively reserved for one particular woman and is therefore extended to all women in the world.

Right…

Anyhow, I question if someone who claims to love everyone actually loves anyone.

Yes, certainly, the “God so loved the world” of John 3:16 doesn’t exclude anyone. We are also told that following after Jesus means that our loyalties to our family are secondary (Luke 14:26) to our calling to bring God’s love to the world. Still, we are also told that a man who doesn’t provide for his own family is worse than an unbeliever (1 Timothy 5:8) and also see love expressed for particular groups and individuals. So God loving the world doesn’t mean that our own love is not especially for some. In fact, while we are instructed to do good to all people, there is also special emphasis given:

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers. (Galatians 6:9‭-‬10 NIV)

Love starts locally. Loving our neighbors means caring about those who cross our paths, preferring those right in front of us over some theoretical duty to all of humanity that is never made manifest in real life. In the story of the good Samaritan, remember, it was those who were too important or thinking of responsibilities down the road, who didn’t attend to the suffering soul beside the path of their greater ambitions. In other words, it is the simpleton, with heart, who stops to help you jump start your car and not the self-important pretentious snob, with a global vision and yet can’t see what is right in front of them.

Bottom line: It is good to love those who are close to us and even to prefer investing in those who, like us, are members of the household of faith. If a person cannot especially love their neighbors across the street, whom they have met, then how could they possibly love those whom they have never met around the world?

For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. (1 John 4:20‭ NIV)

Of Igorot and Mennonite Tribes…

When uncle Roland, a man I had met during my stay in the Philippines, disappeared and was later found murdered in an empty lot, the call for justice went out across social media. It spread like wildfire amongst a certain part of the Filipino population and that being the members of his Igorot tribe. The amazing part is that this collective effort very quickly located the stolen van and only potential lead for this vicious crime. The people who located the van? They were Igorots too, they happened to be on holiday in the “low lands” and spotted the abandoned vehicle.

Mennonites, like Igorots, also take notice when one of their own is missing or harmed. There have been several cases over the past few years that have exploded across the Mennonite online community and made a few individuals into household names. I mean who, in the Menno-sphere, can forget that young married couple, Marco and Mary Ann Kauffman, his life cut tragically short by home invader? Or the disappearance, and later reappearance, of Rodney Sweigart? When a Mennonite is in trouble it is natural that others of their religious tribe, even those who have moved on, respond with extra care and concern.

I was reminded of this once again when I could not resist sharing the story of a young woman, Sasha Krause, who vanished from a Mennonite outpost in Farmington, New Mexico.

Dozens of similar posts about missing persons have crossed my newsfeed, there is likely very little that my sharing (as someone on the other end of the country) will do to help, and yet there is this sort of tribal solidarity that compels me to take an interest, to be somehow involved and share. This young woman could as easily be my sister, my cousin, or any of the number of young Mennonite women whom I know and care about.

Tribal identities, like family identities, are a good thing in that they provide individuals with the protection of a group. The world we live in can be a very rough place and not a place that is very easily navigated alone. We, in the developed world, have a wide range of social programs that attempt to fill individual needs, but the best efforts that government put forward rarely come close to what can be offered by a community of those who share a religious, cultural or tribal identity in common. We have finite resources and prefer to distribute them amongst those who share our common biological heritage or cause.

The Two-edged Sword of Tribally Allocated Care…

Both Jesus and St Paul showed a heightened concern for those who shared their religio-cultural background. They certainly did not hold back in terms of criticism. In fact, their commentary on their Jewish people could be very easily misconstrued into anti-Semitism and very soon was quickly used that way once the Scripture became a subject of individual interpretation in the wake of the Protestant movement in Europe.

Likewise, when a concern goes viral on social media, especially when it involves a particular religious minority group, the feedback can quickly turn very negative. Prejudice can rear its ugly head, those with an ax to grind see an opportunity to promote their own grievances. There are always those who had an unfortunate encounter with that particular tribal group and it was the only bad thing that ever happened to them. So, in the minds of these offended folks, that tribe has become the root of all evil and representative of everything bad in the world. Those full of toxic bitterness will, in the guise of empathy and concern, sow their seeds of destruction.

Very rarely does publicly broadcast dirty laundry do much good when it comes from a tribal outsider without a real or personal connection to those involved. When you leave a tribe you pretty much lose any credibility within the tribe, you have made yourself an outsider by rejecting the group identity and therefore your opinion does not need to be taken seriously by the in-group anymore. To those in that in-group you will be viewed with suspicion, as an external threat to their group cohesion, and summarily dismissed. I’m not saying that is how it should be, that’s just how it is, people do not like judgments coming in from the outside and react defensively in most cases.

Tribal identities very often come with tribal obligations. Those who are showered with concern from within the tribe, even those who did not ask for it, in many cases are expected to give something back in return. Tribes have a sort of “I scratch your back, you scratch mine” arrangement that can go terribly wrong when the devotion to an individual from the tribe does not match the commitment that is reciprocated or vice versa. Feeling betrayed by your own is some of the deepest pain a person can feel. Indeed the world is a very lonely place for those who have been neglected or abandoned by those whom they expected would love them.

But, worse than that, tribes, while easily able to spot sin in all other tribes, too often shelter their own abusers or never see their own shortcomings as a group. Some tribes will, too often, send into exile those who dare to confront or challenge their status quo of the group. This is one thing Mennonites and motorcycle gangs have in common, albeit in different forms, the criminals enforce a “snitches get stitches” code” and too often Christian denominations misallocate forgiveness (for only those who have learned how to exploit their system) rather than follow the order of St Paul in 1 Corinthians 5:13: “Expel the wicked person from among you!”

There is also something more insidious when tribes become too insular or only concerned with protecting their own and that being their lack of care for those that are outside of their identity group. This misallocation of care is up last on my list, but it is certainly not the least as far as things that should concern a Christian.

Tribal Misallocation of Care…

I understand why people prefer their own families and tribes. It is something we are biologically hardwired to do. Religions are forced to hijack familial language, like “brother” and “sister,” in reference to fellow members in hopes of capturing that level of relationship within their ranks.

I’ve observed (and years before a book with Why Are All the Black Kids Sitting Together in the Cafeteria in the title) that my high school cafeteria would segregate along racial lines.

Tribalism has long frustrated me as a force of division and strife. What side of the OJ Simpson case someone came out on, for example, had much to do with a person’s race. The evidence available was the same, yet 67% of black Americans (polled in 1995) thought Simpson was innocent while a vast majority of whites saw him as guilty, that gap has since narrowed. But what that shows is how our perspectives are skewed by our tribal identities and the potential for terrible injustice this presents. The same is true of other identity divisions, such as gender or political affiliation, we tend to see only what is good for our tribe.

Over the past few years wished that I could somehow harness some of the tribal love that is on display in the various GoFundMe campaigns involving one identity group or another. An American, with the right group connections, can easily raise thousands or even hundreds of thousands and despite having insurance, government programs, etc. Meanwhile, a far greater need overseas will often only get a mediocre response because the people don’t look like us, we don’t know them, or simply cannot identify with their struggles being too far removed. That and, given the number of scams out there, we can’t trust outsiders.

Still, we should consider those less fortunate, those less fortunate than the unfortunate members of our own tribes, and love them too. That is the greater implications of Christian love, that our love will erase some of those disparities in care. If we truly believe Galatians 3:28, that “there is neither Jew nor Gentile, neither slave nor free, nor is there male and female,” and that we (as a church) “are all one in Christ Jesus,” then will we ever be satisfied with misappropriation of care based in those listed identities? Can a person be a feminist, a nationalist or an activist for lessor identity groups and a Christian?

When a Mennonite goes missing or is harmed it is easy to understand why other Mennonites take special notice. The idea of having equal love for all of humanity, even those whom you never met, is silliness. That said, when our tribal identities mean indifference or lack of equal empathy for other people whom we encounter who are outside of our group, then we are also putting our Christian identity second. It means we have made an idol of ourselves, our own identity, and should consider the words of Jesus:

If you love those who love you, what credit is that to you? Even sinners love those who love them. And if you do good to those who are good to you, what credit is that to you? Even sinners do that. And if you lend to those from whom you expect repayment, what credit is that to you? Even sinners lend to sinners, expecting to be repaid in full. (Luke 6:32‭-‬34 NIV)

Tribal Expansion…

Love starts locally, it means loving our own tribes. We must learn to love our own, those close to us are sometimes the most difficult to love or hardest to hold accountable. We should love our Trump-supporting neighbors as much as we love the Congolese refugee, the Democrat party loyalist as much as we do the unborn. Christian love has a global reach, it must reach across partisan lines, and should always make us wish to expand the borders of our tribe.

I believe Jesus would weep as much for Muslim children killed by a drone strike as I did for those Amish girls. God loves the missing or exploited Filipino worker overseas, who is only known by their family, as much as the Mennonite online community hopes for the safe return of Sasha Krause. We have our favorites, but God does not.

Christian love, in purest form, turns a world full of misfits and outsiders into one family where everyone belongs and nobody is left behind.

I love mom

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It isn’t Mother’s Day…

But who says I need to turn my love of my mom into a once a year cliché? 

Traditions have a place for expression of love and appreciation.  However, spontaneity seems to have a more authentic or genuine ring to it and I know moms need love from their children year round.

I’ve been struggling trying to blog.  I have plenty of ideas.  I’ve started numerous blogs.  I’ve even published some only to later remove them because they weren’t well-written and thought out.  My mind is just moving too fast right now.  I have something else sucking the oxygen out of the room that makes focus on anything else next to impossible.

Then, after several failed blog brainstorm thoughts, I realized there was one topic that could keep me fixated for long enough to finish the thought.  It is the person who sees the best in me.  Despite my imperfections and flaws, my mom still loves me deeply.  I owe her more than I could ever think to repay.

I would not have made it through the past year without mom.  I’ve had some deep struggles, probably deeper than any I’ve had before in my life, and sometimes my only remaining motivation for living was to not disappoint my mom.  It is why I weep at the thought of losing her.

Don’t get me wrong, there are certainly others who deserve a portion of the credit.  I am grateful for brothers, sisters, pastors, friends and my dad for their investments.  I have deep appreciation for the time and resources they have invested.  However they have not combined matched the contribution of my mother in loyalty, patience, wisdom and depth of concern for my well-being.

I think it is easy to gauge our worth to another person.  Simply estimate the amount of time it would take for them to realize you are gone.  If I were abducted by aliens it could be weeks (even months) until my friends noticed.  Certainly my presence on social media would drop suddenly and somebody may notice, but not many would raise an alarm.

But there are two people who would know.  One would be my boss when his faithful employee was a no-show and didn’t respond to his frantic messages.  The next is most definitely be my mother who has an awareness of when we last spoke and checks in if she doesn’t hear from me.

True concern is what makes a mom special.  But it goes beyond that too.  My mom understands me in a way nobody else does.  I spent more of my life with no other person on earth.  I share some of her personality.  She carried me for months before I was even born, sang to me, fed me and encouraged. 

It was mom who always told me I survived a traumatic birth experience for a special purpose.  I’m not sure I have found that special purpose yet, but I do know my mom hasn’t given up on it and therefore how can I?  I don’t want to disappoint my mom, I’m her sunshine after all, right?

My mom will tell me when I’m wrong.  However, unlike the world that piles on when you need love with criticism or condemnation, I have a mom who will help untangle, pull away weighted objects and dig through the mud to find me in the pile of rubble.  Her hug is worth more than a million words of unsolicited advice from those thinking that’s what I need.

I have an extraordinary mom.  I have a mom who is intelligent and wise.  I have a mom who has overcome many obstacles that may been too much for a weaker person.  She gives me hope when I can’t find my own and love rather than judgment when I fail.

My mom isn’t perfect.  In fact, my mom is much like me and very human.  We don’t always agree.  We argue sometimes.  She’s stubborn and opinionated.  Yet none of that makes me love her less.  If my mom were flawless could she love me?  I mean, love has a component of grace and grace is somewhat a product of knowing how difficult living to a high standard can be.

Anyhow, Mother’s Day is a day before my birthday this year and I like that coincidence.  But my mother has my undivided love year round because there is simply no other in my life like her.  I would be lost in the world without my mother’s love.  Her love is the color in my world.