To the Caregivers of Chronically Ill Children
You don’t know me. I’m just another nameless face in a crowd of the near dozen people who crowd into your chronically ill child’s hospital room every morning to discuss the plan of care for the day. Generally, you have no need to interact with me, and I don’t have much to say to you. I’m just the pharmacist.
But I see you. I see you as you look at us all in weariness, having come in through the emergency room during the night, with your child having her yearly battle with pneumonia.
I see you the next day as your second chronically ill child has been brought in during the night with the same pneumonia as his sibling.
I see you as you go back and forth across the hall to their rooms, wanting to be with both of them but only able to be in one place at a time.
I see you as your child is unable to protect his airway due to his frequent seizure activity as you remain calm, cool and collected as the medical team sedates your child and puts a breathing tube down his throat.
I see you as you look forward to going home that day, only to have your hopes dashed because of a fluke in obtaining timely home nursing care or that night’s total parenteral nutrition (TPN).
I see you as you sit by the bedside of your premature baby, wondering if today will be the day you can finally hold her for the first time.
I see you as you sit by the bedside of your baby, as you have every day for the past 12 months since she was born, and receive the news that this turn for the worse is likely the turn for the worse.
I see you as you bring your child in, overwhelmed with her care and unable to understand how to best care for her due to a language barrier.
I see you as you bring your child with cancer in for abdominal pain, not knowing what is wrong this time … only for it to be his last day.
I see you as you play cards at the nurses’ station with an older child waiting for a heart transplant, all the while hoping against hope that your own child receives a new heart soon before time runs out.
I see you as your recently transplanted child comes in showing signs of organ rejection, praying that this is only a mild rejection and everything will be fine.
I see you as your immunosuppressed child develops a life-threatening infection from a cut on her finger … an infection that will be her last.
I see you on your knees in the hallway, sobbing and shouting your child’s name as the medical team attempts to brings her back from the dead.
I see you as your child is brought in critically ill and the hardest of choices has to be made: Do you allow the surgery, which would possibly result in his death, or let him die from the condition he was brought in for … and you choose to say goodbye?
I see you standing in the corner of the room as attempts are made to resuscitate your child to no avail, and you finally take a deep breath and say, “Stop. He’s gone.”
I see you exhausted. I see you admission after admission, year after year. Caring for your chronically ill child consumes your life, even with home nursing care and other caregivers helping out. You hold on, hoping your child can hold on this time, too.
We, the members of the hospital staff, can’t imagine the strength it takes to do what you do, day in and day out. We celebrate your victories and mourn your losses. After years of caring for your child, we can get attached to them, too. And when the worst happens, we feel it, too. It hits us hard. We hide our tears from you, but they do come. The strength you have as a parent, grandparent or foster parent — whoever you may be — is something that is rare. It’s something only caregivers have.
So if you feel overwhelmed or invisible, just remember: We see you. And we thank you.
Written in honor of National Caregivers Month and all the caregivers I have had the privilege to meet. All stories above are true stories of actual patients and their caregivers.
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