I have found myself sitting in a hospital with my baby more times than I want to count. I have explained his medical history and his symptoms so often that I can recite the exact dates of illnesses and procedures from memory. I have watched him devolve rapidly from giggly and playful to struggling and unresponsive on so many occasions that it no longer induces panic. I’ve learned to remain calm and composed during crises, because I am afraid that if I do not swallow my emotions then they will escalate and I will be asked to leave.
Of course I do have to leave sometimes, during surgeries and other procedures, but for the most part if I can remain dispassionate and not draw excessive attention to myself, then I can stay with my baby and observe his care.
A very difficult challenge for me as the mother of a baby with chronic medical conditions is granting trust to virtual strangers. Doctors, nurses, specialists, therapists — at the end of the day, they all start off as strangers to me, strangers to my son, strangers to our family. I have to first admit to myself that my baby’s needs exceed my ability to help him, and I then have to trust the random doctors and nurses assigned to him in the emergency room to take over.
In turn, they need to trust me in order to recognize that I am not a hysterical novice parent who is just overreacting. The medical staff needs to trust that I am very much in tune with my son and that my reports of his health and history are reliable.
Even though the majority of the time I know that my baby is receiving the best possible care, it is always hard to fully trust in any given episode because there have been the doctors with terrible bedside manners, or the nurses who ignore the call light, or the medication mishaps that were caught but would have been disastrous if missed. Though these situations are very rare, they have occurred just enough that I am constantly on high alert — a state of mind that is just not very conducive to trust.