To The Mom Whose Child is Undiagnosed

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I noticed you right away as I walked into the waiting room at the geneticist office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was ten years ago.
I could hear you talking excitedly to your husband who was holding your son in his arms. You were optimistic that you’d finally discovered some information that might lead to an answer to your son’s problems.
I listened as you used language that would make a bystander think you had a medical degree, but I knew the truth. 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, “It’s 10-year mission: to explore strange new worlds….to boldly go where no man has gone before,” when I enter the geneticist office.
Because that’s what it’s like to have a child who is undiagnosed after ten 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. Campbell’s first geneticist noted that her eyes were larger than average and she had too much hair for a newborn. All things that 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 is also a lot of false hope. It can become an emotional rollercoaster ride.
Motherhood is a balancing act in general, but when you have all these extra things to worry about, it can tilt the scale. 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 SWAN (Syndromes Without a Name). 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 that 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. But if you let it, it will drive you crazy. 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 that 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 “typical” child told me that 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 ten years, I don’t have all the answers.
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About the author

Michelle

Michelle is a writer based in Richmond, KY who is trying to navigate special needs parenthood and life in an imperfect world, all while keeping her sanity. She is on the board of the Bohring-Opitz Syndrome Foundation and is a contributor to The Mighty and The Today Show Parenting Team. She'd love to hear from you! Send her an email at michelle@chasingthecleavers.com.

2 Comments

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  • MichelLe, I have always felt so proud of you. I think you are a wonderful mother. God knows what he’s doing and knows that you are a mom that can handle all the trials you have been through. Keep up the good work.
    I have always loved seeing the pictures you post of Campbell She has such a beautiful smile. I would really like to meet her sometime She has touched my heart so many times. Both of you are an inspiration to me

    • Judy, thank you so much for your kind words. I am so glad that we can share our story and that it has had a positive impact. I would love to see you again and have you meet Campbell. I’ll be in touch soon!

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