|Photo image courtesy of artur84 via freedigitalphotos.net|
Parenting a child with a chronic illness, disability, or special need is a dance -- One that often has us partnered with a person who has newer, more expensive, custom made, orthopedic dance shoes.
Medical professionals of all stripe become that permanent dance partner in our lives when our child receives a diagnosis. This can often make a waltz look much more like a wrestling match. As we get to know our children and how their diagnosis behaves with them specifically, we find ourselves becoming their triage nurse, diagnostician, and we also have definite opinions about what approaches we are willing to explore. At times, this puts us at odds with some of the medical people we encounter.
For instance, I can remember a time when our son was just a toddler. We were trained that if he hit his head on something, it usually was not critical if the object, such as a chair, moved. However, if the item was stationary, there would be reason to do a head CT to assure that he wasn't experiencing a serious intracranial bleed. One weekend, our son led with his tiny toddler head, giving himself yet another nasty hematoma. My husband thought he would offer me a break by running our son in to the ER for infusing with clotting factor, to manage the swelling and reverse the damage. I was glad to relinquish some responsibility for a change.
Before he left, I warned my husband, "They are going to want to do a CT of his head, but he doesn't need one. Stand your ground and don't let them do one."
I continued at home and let my husband enjoy the fun of a 3 hour visit to the ER for an infusion that typically only took 5 minutes to administer. Sure enough, the resident on duty was insisting that our son needed a head CT. To my husband's credit, he stood his ground and said he didn't want our son to have one.
"I know your hematologist, and I KNOW she would want your son to have a head CT in this situation," the resident arrogantly insisted.
"Fine," my husband calmly stated. "Then call her."
"I WILL!" argued the resident.
You can imagine the smirk on my husband's face when an ER nurse returned to the exam room to tell my husband, "The resident decided your son doesn't need a head CT."
Three years ago, our son was admitted after school through the Emergency Department for a life-threatening bleed in his hip area. We were finally ushered to his room on the floor late at night. After dealing with a physician's assistant, a child life specialist, the radiologist who did the ultrasound imaging on his hip, the attending physician in the ER, and the nurses, I could not sanely finish letting the resident on the floor take an entire family health history at 10:30 PM. The mere crisis of the situation had exhausted me. I respectfully asked him if we could just skip this or do it another time. I understood that he needed to learn, but I also knew that this wasn't the moment in time where I could manage a teachable moment for the benefit of another person outside my family.
During yet another hospitalization, I found myself clarifying for a hematology fellow doing grand rounds, some nuance of internal bleeding in my son. She may have been the wunderkind regarding the subject of hematology, but I was the expert on how that bleeding disorder behaves in my child. It was my job to advocate for him and make sure she understood this detail so that he received the proper treatment.
I share each of these anecdotes with you because they aptly illustrate the discerning expertise we parents need to develop in dealing with these professionals. It's not easy. Many of them can be demeaning or dismissive. Still, God calls us to approach them with His grace to the best of our ability. While medical professionals should not treat us with arrogance, neither should WE treat them that way.
Humor has been my coping mechanism through many a trial. When I find myself feeling belittled by a medical student, I often think, "Honey, I have underwear older than you." This helps the tension of their need to feel right and competent -- which can at times be incredibly offensive -- slide right off of me. I would NEVER say this to their face, but it helps me to add a humorous spin in my mind, gaining perspective rather than suddenly questioning my own competence as a parent.
Better yet are Laurie Wallin's recommendations about approaching professionals in her recent release, Get Your Joy Back: Banishing Resentment and Reclaiming Confidence in Your Special Needs Family. Her recommendations challenge readers to examine their own expectations and offer forgiveness that leaves room for God to intervene. She also recommends that parents reconnect with their instincts, approach professionals with prepared documentation on issues, recall past successes in helping their children, try to see from the pressured perspective of the doctors, reframe criticism in order to learn from it, and thank God for the doctors who don't treat you like a chart. Taking these intentional steps helps us to soften as warrior parents, approaching the full range of medical staff with the love of Christ when we would rather blow our stack.
There's no doubt, this parent/medical professional dance requires a whole new language. Keep in mind that it also requires a whole new dimension to our Christian walk, stretching us as believers. How we interact with these people in the medical system makes the difference between reflecting God's glory in the most unlikely of places and looking just like the rest of a sin sick world.
PRAY: Holy Spirit, live in me and work through me. When I am stressed and sleep deprived it is so much easier to blow my stack than to extend Your grace. Grant me Your discernment as I engage in this lifetime dance with people whom You love just as much as You love me.
~ Barb Dittrich