Last Updated on August 9, 2018

I spent one nervous day this past summer waiting for calls and texts from my husband, who was accompanying our teenage son during medical tests. We were waiting for results. Like many parents in similar situations, we had initially observed Teen’s symptoms, but unable to explain them, said, “It’s probably nothing.” Even after an initial visit to the doctor, we were encouraged that they would rule some things out and find he was just having figurative growing pains of adolescence.

But sometimes, for some people, it isn’t nothing — it’s something. And that was the case for Teen this day. So when he, not my husband, finally texted me, it was three words, the name of a specific and chronic neurological condition. I cried.

In the days since, I have reflected on how this experience has been different from the other diagnoses in our family. After all, with three other children with special needs, we’ve been around this block before. But this is Teen, not Toddler. A young man with thoughts and feelings regarding his symptoms, diagnosis, and treatment.

Admittedly, this is still very fresh for us, but here are some things we have quickly learned, in no particular order.

  1. Teen hasn’t changed since yesterday; I just have more information.
  2. Let Teen talk about it — or not.
  3. Don’t keep secrets about the condition, but use discretion. For example, Teen may not want to know all the life-threatening possible side effects of his medication.
  4. One day at a time. As in our case, the future may hold many unknowns, but don’t go there when the answers simply don’t exist.
  5. Do ask questions and seek advice. This may include various doctors, their nurses, a pharmacist, and other parents or kids who can relate.
  6. Consider Teen’s input about treatment decisions.
  7. Don’t let fear dictate decisions, but do be reasonable with precautions as needed.
  8. Encourage Teen to let friends know and pray.
  9. Keep life as normal as possible. This includes school, church, extracurricular activities, and hobbies. Do something fun. Allow transition time if needed.
  10. Do inform adults (youth pastor, coach, teacher, friend’s parent) who may be present in an emergency.
  11. Let Teen choose a medical alert bracelet or necklace as needed.
  12. Help Teen understand and follow treatment plan.
  13. Be extra-sensitive to his or her needs during the adjustment period. Does he need to be with you? Does she need extra sleep? Does he need an afternoon with a friend? Does she need you to provide different food because medication upsets her stomach?
  14. Trust your God-given maternal intuition – if something doesn’t seem right, consult Teen’s doctor.
  15. Above all, pray for Teen. God is bigger than all of it. Trust Him!

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