Coping with a New Medical Diagnosis

At times you may question whether you can sustain it: the unknown, the fear, the constant adrenaline that courses through tired veins as you accept you have a medically fragile child, one who needs constant medication to survive.

My child has adrenal insufficiency, which is when the adrenal glands produce insufficient amounts of the hormone cortisol and sometimes aldosterone, too. When the body is under stress (e.g., fighting an infection), this deficiency of cortisol can result in a life-threatening adrenal crisis characterized by low blood pressure. But the symptoms can also be non-specific in adults, let alone a young child, with this diagnosis. So this mama bear, mama llama, mama shark is on high alert any time her young one seems “off,” like a sixth sense caretakers often develop.

Cortisol’s most important job is to help the body respond to stress. Among its other vital tasks, cortisol helps maintain blood pressure and cardiovascular function; helps slow the immune system’s inflammatory response; helps balance the effects of insulin in breaking down sugar for energy; and helps regulate the metabolism of proteins, carbohydrates, and fats. Suffice to say, when your body doesn’t produce enough of it, there is a major problem.

Will we make it to the ER in times of adrenal crisis? Do I pull over to give her a stress dose on the side of the highway and see the look in her eyes as the large needle is plunged into her leg by the person she trusts the most? What do I say when she cries about having to swallow another pill or see another doctor?

When we were told about our child’s biggest medical issue to date, they passed out information on a support group and paired me with a mother who also had a child with adrenal insufficiency. We spoke for an hour before she revealed that her daughter had died of adrenal crisis at 23. It was at that moment that I realized the seriousness of the diagnosis and that our lives would never be the same. Babysitters and family members are all medically trained, and medical information sheets are posted in our home. On vacations, we map out the closest ER in case she needs an IV stress dose (which has happened four times this year already). We’ve had multiple infusion tests, medication adjustments, and medical tags made.

I fight this deep urge to live in fear. Fear of what the next virus or illness will do to her. Fear of not being there if she happened to start showing symptoms that only I can pick out as abnormal and alarming. Fear that she will not grow up with friends because she misses so much school from coping with all of this. Fear that it will get worse. Fear of the statistic that 1 in 200 episodes of adrenal crisis results in death.

But I fight the fear with hope. Hope that we will find the right daily dose of medication so she can have a better baseline. Hope that her immune system gets a boost and a break. Hope that when I don’t think I can sustain it all, I can seek the love and support from friends to wrap us up in their arms and provide respite. Hope that we continue to seek answers and get them from the medical community we put our trust in.

If you’re coping with a new medical diagnosis for your child, you may be familiar with this balance of hope and fear. I encourage you to ask for help when you need it and look for the joy in the small moments that often come at the most unexpected times. Once, as we waited for some serious blood test results and I was struggling to keep it together in a city far from home, a stranger treated us to a manicure and pedicure anonymously so we could have a little mother/daughter time outside of the medical world. How incredible to feel the love from a stranger. As lonely as it may seem at times, these helpers exist, and reaching out to loved ones or even online support groups with other warrior mamas can make a difference.
As a mother, I want all of my children to see my hope overcome fear, as it permeates all facets of life. There’s much grace in this process; it’s a constant decision to not let the fear guide us. But the fact is, positivity is worth fighting for, even if this unknown has become our new normal.