What I Hope for as the Parent of an Undiagnosed Child

Have you ever had a hard time trying to determine which way was up or down… left or right? If you have ever felt lost in the dark, trying to feel your way out, you may understand where I’m coming from.

I have learned the hard way that every question doesn’t necessarily have an answer. And that there are more colors than just black and white.

In a world where your child’s illness presents more questions than answers, you may not know what exactly to hope for anymore. When you’re the parent of an undiagnosed child, you may find yourself feeling as though someone handed you a menu of possible illnesses and said, “Please review the list of diagnoses and choose one to hope for.”

After quickly noticing a less aggressive, easily treatable illness, you eagerly make your decision, only to find out there are no guarantees you will get what you selected. And so you find yourself fearfully waiting for an answer and questioning… “How long will it take for them to return with a verdict, and which one will it be?

Perhaps they will never return at all and you will be left wondering, “Where do we go from here?
What do you hope for when you live in a topsy-turvy world where testing that comes back negative is not necessarily good news, and extreme treatments that work are potentially bad signs regarding your child’s prognosis?

What do you hope for when your child’s constellation of symptoms don’t fit into any one category, leaving doctors no choice but to run test after test? In the end, you’re only left with more inconclusive information and uncertainty about your child’s health and future.

What do you hope for when it seems as though there are no good choices to hope for? I believe it’s simple…

You hope for another chance at today.

You hope for days without pain or hospital stays.

You hope for another opportunity to laugh louder, hug longer, and love deeper.

You hope for moments filled with lots of smiles and amazing memories.

You hope for wisdom to make the best decisions for your child, with no regrets.

You hope for answers and the strength to handle them when they finally come, no matter what they may be.

You hope no one else has to feel this way and that someday children will never have to endure such things. And you pray your story will somehow have purpose, helping someone else who is facing this kind of journey.

But above all else… you simply keep hoping, because without hope, you have nothing!

This story originally appeared on Bullfrogs and Butterflies.

 We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Undiagnosed

receptionist giving clipboard to patient through window

To the Lab Employees Who Have to 'Deal With Me' Again

Dear lab employees, You may have noticed that I frequent your lab more often than other patients. And you may have found it strange that I have unusual testing done during many of my visits. I’m writing this letter for myself. Not because I owe you an explanation, but because doing so will make my [...]
woman sitting on a white bed and looking out the window

Why I'm Choosing to 'Keep Calm and Carry On' Despite Remaining Undiagnosed

I am a 37-year-old wife and mother to one exceptional toddler. I am a dedicated volunteer and champion for rare disease awareness. I am also a SWAN (syndrome without a name). I have lived the majority of my adult life with a variety of confusing symptoms. I have undergone many diagnostic tests over the past [...]
girl hugging chest covered in floral pattern

When I Try to Describe My Undiagnosed Illness to a Healthy Person

You wouldn’t believe me if I described to you what my life is like with chronic illness. You couldn’t fathom what the last decade has been like for me from the severe debilitation, to the abundant lab draws, to the constant poking and prodding, and the idea that I am living this mess without an [...]
Doctor taking a patient's blood pressure

When the Doctor Told Me, 'Not Everyone Receives a Diagnosis'

I laid on the exam table as electrical currents sped through my limbs. It was my second time having an EMG in a three-month period. No, I do not enjoy having testing done. In fact, it produces anxiety for me that makes living with an undiagnosed chronic illness that much harder. As the doctor explained [...]