When Doctors Don’t Know the Answers

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In novels and televisions shows doctors are almost God like. They always figure out the disease or condition, and everything is wrapped up with a nice neat little bow at the end of the hour. When you have a child with chronic illness, you sadly come to the realization that doctors aren’t God like at all, but disappointingly human and sometimes they just don’t know. As a parent with a chronically ill child, this is it’s own special level of parenting hell.

In novels and televisions shows doctors are almost God like. They always figure out the disease or condition, and everything is wrapped up with a nice neat little bow at the end of the hour. When you have a child with chronic illness, you sadly come to the realization that doctors aren’t God like at all, but disappointingly human and sometimes they just don’t know. As a parent with a chronically ill child, this is it’s own special level of parenting hell.

 

Bayla has always been a sickly child, despite the fact she was a full term baby at a whopping nine pounds. I’ve shared some of her struggles with food allergies, and even her first hospitalization at the Mayo Clinic hospital in Rochester. I remember when she was little how exhausting I thought it was to have a child with severe allergies. There were times that I couldn’t stop thinking about all the things that she couldn’t do, and the discomfort she would feel when her eczema flared. Those time seem like a happy memory now because I never imagined that her skin would be so unmanageable that she required not one,  not two, but three hospitalizations for what the doctors keeping saying is eczema.

You might be thinking it’s eczema, it means she is slightly itchy right? Think of having a mild form of poison ivy on your body head to toe. Your ankles and knees look more like elephant hide than the skin of an 11 year old little girl. You have open sores all up and down your legs from the bacteria that has found a happy place to grow on your weakened skin. Each night you have to sleep with socks on your hands to prevent you from scratching even more in your sleep.

And it’s not just the eczema that’s the issue. It’s like slowly watching your child die inside and out a little bit at a time. Once a girl that wouldn’t care less what anyone thought, she now rarely wants to go in public for fear someone might stare or more brazenly ask what is wrong with her face (link).  She no longer enjoys activities that used to bring her joy because they make her skin uncomfortable. As a parent it’s about the most helpless that you can feel.

Watching new welts and swollen patches appear on your child, and you have no idea what is the cause is maddening. You fear the unknown. You fear that one morning you will go to wake your child, and they will be gone forever because their little body just couldn’t handle anymore.  It’s something that our family lives with every day. It’s always looming in the back of my mind like watching your child grow up with the grim reaper with their hand delicately placed on their shoulder. Just watching and waiting for that moment when they snatch beyond your reach.

My daughter’s story is about allergies and severe eczema, maybe you’ve dealt with something more serious and had the eye opening experience of stumped doctors. You don’t expect the top doctors in the world to do nothing but give you medication after medication just to hope that one of them sticks. You never in your life thought you would watch their “plan” to get your daughter better to be throwing Jell-O at a wall.

As I write this, Bayla has finished her third hospitalization of 24 hour wet wrap therapy for her “atopic dermatitis.” She left the hospital completely clear, but just as we said she would she is already almost completely covered head to toe just a mere five days after being discharged. There are even some new spots that look different from what she had before.

My mother’s intuition has been screaming at me for well over a year now,  and in my experience you should always listen to your intuition when it comes to your kids. You don’t need a Ph.D. or an M.D. behind your name to know something is amiss. You know your child more than anyone else in  the world. You brought them into this world, and have been with them every day since. When you have a child like mine and the doctors don’t know the answers be the thorn in their side. Research on your own. Reach out to your mother friends. No matter how hopeless it feels, never stop giving up.

I got some wise words from my friend Rachel who writes Finding Joy. She shared that parents don’t share stories like ours for pity, because pity very seldom helps. Make sure ” To look at those whose lives are challenging not with pity but with admiration for their courage.” If you are that parent, stay strong and if you know that parent make sure to reach out because we are only human. Lending a gentle ear or a mighty roar of frustration in their battle might just be the saving grace they need to get them through.