I posted this Aug 9, 2016
I wanted to use this board to post a heart-felt tribute to one of our fallen little ones. I fear it will be watered with tears as I write. Little Mikayla Kincheloe died at 0130 Friday night of unknown cause. Her and my sojourn in Missouri were closely knit temporally and medically. Her birth coincided with my arrival in Missouri about six years ago and we departed within months of each other, her...to a much better place!! (permission given from mom and dad to post this per privacy concerns, so they reviewed the text before posting).
As most of you know, I have made it a practice to learn from you and your kids then pass on what I learn to the rest of you, during office visits or on my Facebook venue. Some kids teach me much more than I bargain for. Mikayla and her parents were such. Those of you in Missouri who knew her understand that she was born with a major lower body malformation called Caudal Regression Syndrome causing her to have no use of her lower spine, lower extremities and bladder function. These issues were to be the main focus of her medical history. So, what did little Miss Mikayla teach me during those six years?
1. I now believe that our founding fathers had the source and distribution of happiness wrong. Remember the Declaration of Independence? "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." I have till now also held these to be self-evident but now that last, "the pursuit of happiness", has changed. This little girl taught me that our goal in life should not be the pursuit of OUR happiness, but the pursuit of the happiness of those around us. Mikayla was born into a world without being asked permission to do so. She never asked for her disabilities and limitations. When we are born into the human condition, we are NEVER promised happiness in this life. What we do with the life we are given CREATES happiness in others, and then as a consequence, in ourselves. Whenever Mikayla came to see me, it was not like a small ray of sunshine poking through the clouds. It was rather like the full midday sun that brightened up the entire office!!!!! I could tell when she was not feeling well when her smile was a bit slow in coming, but there was never a visit that the sun did not shine; sometimes the sun was a bit clouded over but was there nonetheless. Most of the time, as I walked into the examining room, she sat either on mom's lap or on the examining table beaming. And then she and I would chat about her day for a bit before getting down to business. Sometimes the visit would end up in tears when she would require a painful injection of antibiotics, but somehow, I never felt like she ever held it against me. She never complained about her lot in life. She rejoiced when she could show off her new-found skills of scooting about, and that, quite quickly! She was mighty proud when she could show off her new wheelchair that allowed her to get around yet more quickly as she grew. She was the epitome of a philosophy of life that says "I will spread joy and happiness to all around me regardless of my own circumstances. I will not pursue happiness; rather I will create a contagious happiness." That she did!!!! BIG time.
2. She taught me that there is true evil and sin in the world. We are none of us born into a perfect creation. We are burdened with physical, emotional, and mental disabilities that may not be of our own making. We find ourselves here due to the accumulated millennia of genetic mutations and ancient life style choices. We find ourselves here many times due to choices made by our original parents. It's like the question "why do you live in Idaho or why do you live in Missouri?" For many of us it is because our distant great great great grandparents moved here by choice and the family ended up planting itself. For Mikayla, like some of us, we do not know what caused her congenital problems directly. These disabilities were not part of God's original intent for us. We ask, "O, why did God let this happen to her?" or "why did God take her from us so early?" The bottom line is that God is NOT responsible for the evil in this world whether it be death, disease, disability, emotional disorders, genetic mutations, etc. For those of us of Faith, there is a powerful hope that this God who originally made things perfect will return things as they were in His own time. This faith was evident in Mikayla's parents. We never talked "religion" at the office for propriety sake, but that faith shone out none-the-less. I also know that because of this faith, her parents know with a surety that they will see their little one again.
3. She displayed to me the tripartite being into which we are born, the physical, the soulish part of us, and the spirit. Which part of our being we live in most will be displayed in our lifestyle, words, deeds, attitudes, etc. The physical is this body which we cloth, feed, adorn and to which we administer all kinds of attention. It is the part of us that we try to make feel better when we get sick with fever, flu, etc, and the part to which we pay a LOT of attention when it is born with physical issues like Mikayala or when it becomes debilitated in some form. The soul is our personality, our likes, dislikes, dreams, aspirations, attempts at education and culture, etc. The spirit is the lofty part of us humans that directs our morality, that allows us to commune with our God, that allows us to be quiet and think about where we have come from and where we are going. It is the part of us that is touched when someone does a kindness to us or when we do a kindness to others. It is this part of our being where the loftiest efforts must be aimed in order to become truly and fully human. I have to tell you folks, Mikayla was so much further ahead of most of us adults in this regard. She had physical limitations that kept her floor and wheelchair bound but this never was all-consuming and was never something that held her personality or spirit back. Her mind blossomed into brightness. I could tell this when she started school. Her spirit had an eagerness to spread a contagious joy to those around her. Unfortunately, most of us adults are so bound by our physical limitations that it has a dramatic dampening effect on our personality (soul) and spirit. We become whiny, even angry with our neighbors, friends, family, and even God for our lot in life. We let the physical part of our existence totally overshadow the more important development of personality/character and spirit. Then, for many of us, we consider ourselves totally "non-spiritual", being content to educate our frame, develop hobbies and interests, stay informed about the news, become cultured, and generally good members of society. However, unless we nurture that spiritual part of our being we will never be fully human as God intended. In fact, I would venture that a person without a developed spiritual self is worse off than a Mikayla who had to deal with physical infirmity but was spiritually alive even as a child!!! Amazing thought!!! By now some of you are saying, "Wow! Dr Brus is getting awful preachy, kind-of out of his element!!!" And, yes, may sound a bit preachy, but, here is the reality (BTW, ALL this relates to me also, so am "preaching" to myself)... We as physicians are asked to help heal those less fortunate. We are asked to use our training to ease the burdens of our human existence. However, so many times we use the techniques for healing the physical frame to try heal matters of the soul or spirit. It is one thing to treat an ear infection or a broken bone. It is a totally different matter to treat anxiety, depression, ADHD, fear, etc. So many times we physicians treat these things like physical ailments and throw medication at them like they were a strep throat or use counseling like a splint for a broken bone. We were all created with a God-sized hole in our souls and we try and fill that void with all kinds of things, activities, possessions, "feel-good" activities (even beneficial ones), people, etc. and nothing is ever quite adequate to fill that hole. When our pain and anxiety get the better of us, we even try and fill the hole with medication. Mikayla's God sized hole was brimming. It was evident to those around her. You say, "well a small child cannot know about spiritual things like God and happiness, etc." You and I will have to part company on that one. I see too much day in and day out where the comparison is dramatic in kids that are spiritually already mature and those that are not. I SO encourage those of you parents who are not spiritually "in tune", please get your own "God-sized hole" filled so you can then help your kids fill theirs. We tend not to think about the realities of an "eternity" until we lose someone that is close to us. The perspective on our short existence on this ball of dirt is quite different depending on your broader view of reality. What I do day to day and even how I treat illness in the kiddos is affected by whether I think that "this is all there is" vs, whether I think "this life is preparatory for a bigger reality." Enough preaching!!!!!!!! I hope I have not made some of you angry. If I have, forgive me. Had to get some things off my chest...Mikayla gave me the excuse to do so. Miss Mikayla Kincheloe, you will be missed sorely...but not forever...We WILL see each other again.
The photo is of Mikayla showing off her new and updated wheelchair up at St Louis Children's Hospital just this summer (2016).