Your child will no longer be medically interesting, a curiosity that baffles the best in their fields. In the medical world interesting is not a positive adjective. You endlessly get up and go to appointments, tests, therapies and procedures. All with the expectation that you will be one step closer to the truth. You tip toe around your pediatrician because you know she is awesome and you don’t want to burn her out. As you are unsure if one more referral letter or special paperwork might make her want to drop you . You only ask for extra when you know it’s neccessary. But you know she is awesome because the second you ask her if you should accept not knowing she helps guide you back, letting you know your advocacy is the only voice your kid has for their future.
Then there are the nights where another symptom has appeared or another diagnosis made and you sit there terrified because it reminds you undiagnosed means you have no clue what the next turn will bring you. You have no idea if your child will outgrow everything, if they will struggle their entire life or that if one day something won’t be fixable this side of heaven. Those are the nights the tears fall in the dark while everyone else sleeps.
On top of the stress you deal with the skeptics and the critics. Your child is fine. You need to use this natural treatment and they will be cured. Your cousin’s kid is small and they are perfectly fine. You are paranoid and everything you’re putting your child through is unnecessary. They are hundreds of miles away but they know best. They know better than all the experts and medical professionals. The more skepticism and criticism you hear the less you share. You retreat even more and you hold it inside. This is your silent battle but you will fight this battle because it’s what parents do. They conquer the monsters and break through the darkness. Even in small ways of tickle wars in a hospital bed or holding your child tightly while they cry for fear or sadness or pain.
You email endless specialists to see what their admitting protocol is because if you can find the right expert the mystery will be solved. You make phone calls to awareness associations to see if your kid might fit their themed diagnosis and you join Facebook groups based on every single symptom and diagnosis your child has hoping someone will be in the same boat as you and help you complete the puzzle. You spend nights analyzing test results and you scour the Internet for a glimmer of light for the most recent puzzle piece. While the rest of your house is sleeping you are working. Finding any loop hole to get insurance to pay for whole exome and/or genome testing. This is hours on the phone with insurance to see what they will Cover instead or what hoops need jumped to get to the end of that road.
The road of the undiagnosed child is scary, disappointing, heart breaking and exhausting. You daily have find strength to keep fighting. With each discouraging test that brings no answers you have to punch through wanting to give up. Ultimately you keep your hope because without hope your advocacy will falter and your child will be voiceless. You as a parent will fight the battle no one else sees or understands. You will be made to feel guilty or paranoid by people who mean well. You will be made to feel the same by people who do not mean well. But when you look at your child you know immediately that what people think doesn’t matter, the miles and lengths it takes doesn’t matter, you know the weight of the load and the height of the obstacle doesn’t matter. Because in the end giving your kid the best parts of you to ensure their future is the best it can be is what this entire fight is about.
“Now, every time I witness a strong person, I want to know: what dark did you conquer in your story? Mountains do not rise without earthquakes.” -Katherine MacKenett
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