You called yourself the reluctant parent with your first child, but everything changed when this precious second one with special, unexpected needs, entered your world. You gave up so much to devote yourself to this child’s care, and to give the older one as normal of a life as possible. There is a photo you taped to the hospital bed of the two of them dressed up as a popular fictional duo for Halloween. I am sure countless families with multiple children have pictures like these, but this picture….I can’t stop staring at this picture. I think it’s because it testifies in the most beautiful way what amazing parents you have been. You have given your older child a normal childhood. And you have looked your younger child’s awful diagnosis in its face and refused to let it dehumanize her any further. You refused to make her life a throwaway life, and you loved her. You gave her a childhood on Halloween like every other child who wanted to dress up and have silly pictures taken that day. You so clearly loved her, and you love her now, more than you ever realized…as you sit with the impossible decision you have had to make to withdraw life support so that she will not suffer any longer.
I see you, holding her little hand, stroking her little feet, smiling the most bittersweet smile on the rare occasions she opens her eyes. I see you, screaming on the inside for her to stay with you, to show you a miracle and show you how she can keep going for some more adventures and laughs and giggles without life support. I see you, hurting for her and feeling so sorry for all of her suffering and knowing it is not fair to ask her to suffer any longer just so you can keep her a little longer. I see you, stuck in this place, looking back, looking forward, and just holding onto this moment as tightly TIGHTLY as you can. I can. not. imagine. how it must feel for you to know the exact day and time when life support will be taken away, to know that you had to make that choice. My heart hurts for your heart. Please be kind to yourself in the days, weeks, months and years ahead.
It has been my privilege to be your nurse. It has been my privilege to take care of your child. I am so sorry for the times I have had to make her uncomfortable to do my job well. In these concentrated 12 hour shifts, I get a glimpse into your world, your hearts, your family dynamics, and it is a heartbreaking privilege for me to bear witness to your journey, which no one else sees the way we do here in this hospital room. The world goes on around these walls, goes about its usual business, not knowing you are here, feeling what you feel and seeing what you see in this little room. But we are here. I am here. You don’t have a lot of control as to which nurses come in to share – and shape – this experience with you. I hope you know, all I want is to make this more tolerable for you, somehow.
I am sorry I asked you the wrong question this morning. “How are you guys doing?” I hate that question and I hate that I asked it. You surely have been and will be asked that blanket question, and all you can do is give the tired blanket answer. “Okay.” If I had a next time with you, I would ask such different questions. “How can I help you get through today with more hope? What can I do to make any part of this a little easier for you?”
You have been so unbelievably courageous, though I know you do not always feel that way. Please, please be kind to yourself. Please know it is ok to not feel strong. Please find relief and comfort through your grieving. Please know that we do not forget your child either.
Thank you for teaching me how to love my own child better. Thank you for teaching me about gratitude for all that I would otherwise take for granted. Thank you for the privilege of being your nurse.