To The Curiosity Seekers Who Ask About My Daughter’s Medical Condition

It’s a dance in which I know all the steps too well. I bump into an old friend or acquaintance and after a moment of polite chitchat the conversation takes a sharp left turn and the tone becomes serious. “How’s Savannah doing?” they’ll ask.

This is where I falter.

Savannah, my one and only child, was diagnosed with panhypopituitarism, a rare endocrine condition in which she makes no hormones, just weeks after her birth. In the 10 years since I have yet to meet a non-medical professional familiar with the condition, so there is always wide-eyed fascination. Questions range from the standard, “Do the doctors know what caused it?” to the inane: “But will she lead a normal life?”

Other than the medical alert bracelet on her right wrist there are no telltale signs that Savannah is panpit. With medicine she’ll replace all the hormones she doesn’t make. Still, because her body doesn’t produce the stress hormone cortisol, she’s at constant risk for an adrenal crisis, a potentially life-threatening situation that if not immediately treated can lead to shock, seizures or coma.

My temptation is to unload on these curiosity seekers with the gritty details of a recent emergency room visit for an adrenal crisis or my concerns about puberty, however, experience has taught me to tread lightly. People feign interest, but are never prepared to respond when you go head-to-head. Spill a wee bit too much and backs stiffen and the room goes cold. “But we have a great doctor!” I’ll say, back peddling.

Sometime to offset insensitive remarks of “at least it’s not cancer” or “God only gives you what you can handle,” I do a preemptive strike. “She’s fine, thank you,” I’ll say with a smile before steering the conversation to lighter territory.

Still, the real question that one needs to asks, and which would be more revealing of Savannah’s health is not “How’s your daughter?” but “How are you?” No one dare asks that.

Savannah is thriving today largely because this single mama tiger continues to fight for her medical care and educational services, and this simple three word question would reveal that. More so, it would allow me to stop whitewashing the truth and vent the years of pain and frustration I have bottled inside.

Like many caregivers I’m burned out. There are days after a heated battled with the insurance company or after spending hours in a doctor’s waiting room, I question if I have the mental and emotional stamina for the long haul. When I look both forward and back, I see the same: doctor’s appointments, specialists, tests, bills and more bills. There’s no endpoint.

I count the years until my daughter is an adult, gainfully employed and I can pass the baton to her. Then feel guilty. The management of her condition is a helluva burden and breaks my heart this is her fate, especially given this country’s health care situation. I also know that deep down I probably will never relinquish full control, so to the curious who wonder how one lives with no pituitary gland, I suggest they ask once — just once — how this tired mom is faring.

11 responses to “To The Curiosity Seekers Who Ask About My Daughter’s Medical Condition

  1. You are a good mom and a brave woman.
    As a single mother to two kids, one who has an invisable condition I know the feeling of being tempted to let it all hang out but always stopping myself because only someone who is living with something simular could ever understand or comprehend the things you go through every single day of your life.

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  2. I am also a caregiver. I understand the frustration.

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  3. As a single mom to 2 special needs kids, I get the exhaustion, stress, and worry. Fighting the school and insurance and the medical system gets wearing too. You’d think the so called safety net and professionals understand…

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  4. My heart goes out to you. May courage and perseverance be with you. Hugs, Vera

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  5. I have no frame of reference for most of what you’ve written here – my kids have no special needs, I’m in a stable co-parenting, cohabiting relationship, and my resting B face keeps most people from asking me intrusive questions. I don’t even know you. But I wanted to chime in with a “how are you?” So, how are you?

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  6. When I got sick at 14, my Mum was the fierce tiger; the one staying up til midnight researching with bleary eyes; the one arguing with doctors that I was NOT making it up; the one who took me to and from appointments; the one who held me as I cried; the one who wrote countless pages of notes on what medications I was taking, and what side effects they were having; the one who refused to give up until we had a diagnosis and a treatment plan.

    I’m now 26, and married. And although I still keep my Mum relatively up to date with what’s going on with my medical stuff, and ask her opinion about big medical changes, I am well and truly the baton holder. I make the decisions about which doctors to see. I am in charge of my treatment plan. I am the one who does the research, and weighs the pros and cons of every medical decision.

    I am super thankful for all my Mum’s hard work when I was younger, but it is right for me to hold the baton now. I’m telling you this so that you can know it DOES get easier! There will be a day where you can pass on the baton, and, if your daughter is anything like me, she won’t mind at all. It’s the way it should be!

    ❤ xx

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  7. I feel the same care-giver guilt. I love my son but I count the days till he grows up. Then I feel guilty and in reality, I wonder if he will be able to live independently (He has high functioning Autism). I guess it all depends on how well I raise him, with all the therapies, IEP meetings, doctor’s appointments, etc. right now. God give us both strength a we do the best we can.

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