Recently, I was hired for three speaking engagements for our local hospital system.  I was honored, humbled and awed by the requests.  One of the talks was for a leadership group that met monthly, and my talk corresponded to the chapter about leadership on the frontier from the book the group had been reading.  Before visions of Walt Disney’s “Frontier Land” flash before your eyes, the frontier in question is being intentional about leading and looking for ways to serve those who have been misaligned, neglected, forgotten, hurt, or misunderstood.  I shared lessons learned as a quarter of a century (How could that be true?) educator, peppered with anecdotes and tales from the trenches classrooms of children ranging from 2^nd grade to college seniors.  At the conclusion, my challenge to the group was two-fold:  1) ask God to break your heart, because from the depth of sadness we often find our passion and 2) don’t think too highly of yourself.  The latter being a message for me as well.  I have had successes as an educator, but I have had equally as many failures, steps backwards, and misunderstandings.  And there I stood before vice-presidents, presidents, and top-notch health care executives asking them to remember every leadership lesson I shared that day was taught to me by children.  Physician: heal thyself, and teacher: educate thyself.

One of the greatest lessons I have learned in life (and one of my leadership points) came from one of my life’s saddest moments. After enduring the heartbreak of losing Reed and trying to help Sister and Sawyer heal from the bus crash, I quickly came to the realization that much of what I think I know about other people’s lives is wrong.  This education arose through the wisdom of those who had walked in our shoes but was refined by those who had no idea the advice they were proffering was not helpful and worse yet, at times, hurtful.  While our valley of grief was long and arduous, it was still worthwhile, producing gentler and kinder versions of ourselves.  We became a people who realized that much of the ugly in the world is a direct result of sadness and hurt.  As a teacher, this education was better than anything I have ever learned in a book or in a classroom.  I had to walk a journey of a million steps in pain to produce a heart that recognizes when a student seems to be out of sorts, there is typically some type of hurt or sadness behind it.  Serving others came naturally to me before my darkest day, but loving those who appear “unlovable in the moment” became my rally cry afterwards.

I honestly wish that all educators would have an earth shattering, heartbreaking moment. Many have already experienced their own sadness, but for those who have not, the result would be eye-opening.  Sadly, I know this be true, because of experiences one of my children has had over and over again.

Six years ago, my oldest daughter began to experience hives.  At first, the outbreaks appeared to perhaps have an environmental trigger (akin to seasonal allergies), and then a suggestion was made that maybe water might be to blame.  Swimming produced hives, but showering and using our hot tub did not.  Time and again, we went back to the proverbial drawing board. None of the “causes” were the real culprit. She has been poked and prodded (one visit required 17 vials of blood), written incessant journals of food and activity logs, and tried all sorts of medications, creams, and ointments.  We have even tried homeopathic remedies, but not a single thing made any difference.  Meanwhile, she has endured urticarial (the scientific name for hives) episodes every day – EVERY DAY – for the last six years.  Some outbreaks would be small clusters.  Others would be large nodules, and worst of all, would be the times  hives the size of dinner plates covered her body.

 

While some notice the welts that would appear at whim, very few notice the side effects.  Sleep would be elusive due to eruptions happening or the uncomfortable nature of itching and scratching.  Outbreaks are also mentally and emotionally draining.  How many teenage girls do you know that want to sit in class and suddenly have red and enflamed clusters of hives break out? Fashion accessories they are not. On top of it all, how does a student maintain focus and concentrate when pain is a constant companion?

Removing my teacher hat and simply being my child’s momma, we have seen every possible specialist with the hopes of finding a definitive diagnosis.  We have logged hours in clinics and hospitals, in the car travelling great distances to talk to the “best of the best”, and in the library reading every possible article and study on raising a child with chronic illness.  Often we shared these studies with her school, in the hopes of helping others to understand how debilitating chronic illness is.  Some times our efforts seemed to be in vain, when it was suggested that

• These hives are all in her head.
• Pretty sure this is a sign of anxiety. (She does NOT have anxiety.  Trust me, among the myriad of doctors, we checked and double-checked.)
• She is doing this for attention.

Short of “appalled” and “righteous indignation”, I have no other words for these suggestions.  I will be honest.  I have cried more tears than I knew possible; many of those tears wept while lying in my bed grieving my child’s journey. No momma dreams of her child having a debilitating, chronic illness. While some call me “strong”, they might be shocked to learn there are definitely things that sentence me to my bed because life is simply that overwhelming. Yet somehow in those painful moments quietly tucked under the covers, my eyes are drawn to a God who I know loves us and my sweet girl more than I ever could.  

During these times, He reminds me there are the teachers and school nurses whose hearts have been broken and who try to understand what our girl is going through.  There are also doctors who look your sweet child in the eye and say, “I believe I know what you have.  No more pokes and prods. No more journals.  And while there isn’t a cure, there is a treatment for which I think you would be an ideal candidate.”  Even more so, this amazing physician held my child’s hands and lovingly reassured her that she would no longer slip through the cracks and told her emphatically “No! None of this is in your head.” and cried with her.

I have learned many lessons through this saga, and as the treatments continue (Praise the Lord successfully so far!), I am sure there will be others to learn.  Throughout my career, I have always tried to err on the side of compassion, but for the times I failed, I am truly sorry. For my students of the past, present and future: I can only offer that today because our struggles, I am a better person for it.  So when you come to my classroom or office, just know I will listen and together we will make a plan for you to be successful. For every educator – no scratch that – for every human being: ask God to show you the sufferings of others and how you can be a shining light in the midst of their storms.  For all the mommas who have children with illnesses seen and unseen, who search for answers even when they aren’t the ones wanted, who have shed tears and have lost sleep, and who have had to explain their child’s illness over and over, just know you hold a special place in my heart and more importantly in my prayers.

For you sweet mommas, I have two words: Warrior On!