Your child is not a diagnosis
No matter what happens in a doctor’s office, an examining room, a hospital, a waiting room, a phlebotomy lab, a lobby, a prep room, a surgery room, a recovery room, a clinic, a rehab center, an evaluation room, a therapist’s office—that will always hold true.
What happens in any of those places is just a small portion of who your child is and who she might become. Sometimes, especially at first, it can feel like all that she is and will become. This is a mirage that can develop from too much proximity to those places.
Beyond the medical world, beyond the meds, beyond the proclamations and predictions and sometimes false predictions, and the second and third versions of the proclamations and predictions, there is your child, whole.
She is not a list of conditions. She is a person. A complete, 3-dimensional person with all of the nuances and proclivities that go into personhood. You will come to know her as no one else can. You will know her, and all that she is, better than all of the experts. You are the ultimate expert, and learning to trust your expertise and follow your gut will help when you are making the many decisions that will need to be made on an ongoing basis.
Do not be hard on yourself. Be gentle, if you can. Show yourself the same compassion you show your child.
Lean on those around you. You may be surprised by how much they have to give.
Practice self-care whenever possible. It often feels like a bad joke to be told this, and next to impossible to do. Do what you can. Little intervals of space—like a 5-minute walk or breathing in and out to the count of 4—can help.
Hold on to the idea of your child as a complete person, especially if you get tough news. Know that she is more, elaborately more, than the sum of what the experts say. She is a heart and a soul, and she is yours.