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To the Mom in the Waiting Room Whose Child Is Undiagnosed

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I noticed you right away as I walked into the waiting room at the geneticist’s office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was 10 years ago.

I could hear you talking excitedly to your husband, who was holding your son in his arms. You were optimistic you’d finally discovered some information that might lead to an answer to your son’s issues.

I listened as you used language that would make a bystander think you had a medical degree, but I suspected you were self-taught by the indomitable will and determination of a mom searching for answers.

I watched as you gathered your belongings when the nurse called your son’s name, and we made eye contact briefly. We smiled at one another, but I caught the questioning look in your eye. I knew you wanted to ask about our story.

I watched as your family disappeared behind the door and remembered being in your shoes. I had mixed feelings about whether or not I would have liked more time to talk to you in the waiting room.

Because the truth is, after years of endless research, tests and watching countless episodes of “Mystery Diagnosis,” my daughter still doesn’t have a diagnosis. I’m not sure I want to see the light dim in your eyes when I deliver that news.

Even after all this time, I still expect to hear the preamble to “Star Trek” with Captain Kirk announcing the mission “to explore strange new worlds… to boldly go where no man has gone before,” when I enter the geneticist’s office.

Because that’s what it’s like to have a child who is undiagnosed after 10 years. It’s living with the unknown, and it’s often unpredictable. It’s a maze of tests and research with the experts ultimately saying, “We still don’t have an answer.”

But then I think of all the things I wish someone had told me when I was in your shoes.

To not take things personally. My daughter Campbell’s first geneticist noted her eyes were larger than average and she had too much hair for a newborn — all things I saw in her as being beautiful, and I still do, despite what it says in some medical chart long filed away — yet they can be markers for a genetic condition.

Your child is still the same person as he was before they started to pick apart everything that is “wrong.”

Keep researching, but don’t let it consume you. The Internet is a wealth of information, but make sure the source is reputable and always confer with a medical professional. There are many cases of a parent finding the key to figuring out the diagnosis, but there can also be a lot of false hope. It can become an emotional rollercoaster ride.

Remember, you’re human and can only do so much. Take time to just be a mom, a family and enjoy your son. Go to the park, paint the sidewalk in chalk, and always take time for yourself.

Make sure you talk to other mothers of children who are undiagnosed. There is a fantastic organization called Syndromes Without A Name (SWAN). They have a lot of information about being undiagnosed, including message boards and support systems of people in similar situations.

There isn’t a book you can buy that outlines proven treatments and resources if your child doesn’t have a diagnosis. You can’t find stories from someone who has the same condition to give you a glimpse into your child’s future. But finding a support system will help you connect with others in similar situations. You can compare notes and even help each other find clues to your child’s condition.

I know it’s hard, but try not to get hung up on the “what ifs.” You can’t live your life in fear, not only for yourself but also for your child and the rest of your family. It can feel like a race against time, and sometimes it can be. Give yourself a break and remember you’re doing everything you can.

With that being said, don’t ever lose hope. Don’t lose the optimism you had in the waiting room. You are your child’s biggest advocate, and a mother in search of answers is a force to be reckoned with. Don’t lose the fight, but put it in perspective.

One of the things that helped me most was when a mom of a child without a condition told me she worried about the “what ifs” in her child’s future but with a different spin. She said she would often worry, “What if my child develops cancer, or what if she dies in a car accident?”

Life is uncertain for everyone.

I’ve come to be at peace with that, and I hope you can, too. Take one day at a time and think about this quote from Maya Angelou, “Hoping for the best, prepared for the worst, and unsurprised by anything in between.”

I keep it on my phone and pull it out when things get tough. And remember, you really aren’t alone. There are others of us out here fighting the unknown while still living a full life. Just reach out. We can help each other, because even after 10 years, I don’t have all the answers.

handwritten note on butterfly paper

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Originally published: March 4, 2016
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