Sometimes I have experiences in the children’s hospital that leave me with one clear emotion, whether it be grief or anger or sadness or hope or relief. And sometimes, an experience leaves me so mixed and confused feeling everything.
Well, E’s death has done that. This little boy is precious, cute, and way more full of energy than kids his age and size normally are. But his death will always be tie to the complexity of what it means to be family, what it means to be present, and what the responsibilities are for both a staff and a parent. This child’s life and death connects joy and pain, anger and understanding, consolation and frustration, hope and despair, being surrounded and being alone, presence and the lack thereof, love and hurt.
His family cared and loved him I truly believe. But that is the complexity and the gray area I can’t quite fully know, and that I don’t need to.
What I do know is that I miss this boy for whom I shared some of Ryan’s toddler books to read and play with.
What I do know is that this boy was loved and cared for by those who cared for him every day. Our staff. They showered him with love indeed.
I grieve for E because he shared the age of my son. I grieved for him because I sang to him like I do my son- Jesus Loves Me and Twinke Twinkle. I grieved because I couldn’t see anything other than a boy who I treasured as a gift that wasn’t mine, but his families. But a gift I am thankful to have played with. So, to name my thoughts, a litany/prayer for him:
Litany for a Boy
What did you want from this life? Did you get it dear child?
You wanted to move…move with eccentricity and energy and all over the place with typical toddler abandon…
And you did, and for that we were stressed but we celebrated.
You wanted to touch…touch, err, well grab at every cord, tube, trach, blanket and towel at your side…
And you did, and for that we found new gray hairs but we were encouraged.
You wanted to watch…watch Elmo and Sesame Street and be mesmerized by their joy and strangeness…
And you did, with so much focus that you even calmed at times, and we were grateful.
You wanted to chew…chew on washcloths, towels, toys, and even cords too…
And you did, even playing fetch with us, and we smiled with joy.
You wanted to talk and walk…talk and walk as best you could, learning every step with staff who willed you farther and farther…
And you did, with noises and playful movements on play mats that were beautiful, and we were overflowed with hope and relief.
You wanted to grow…grow from a little baby to very young boy with all the child like ness you could muster,
And you did, with units at the ready to fulfill your needs and watch with excitement and commitment, and we watched with wonder and amazement.
You wanted to breathe…breathe with lungs that seemed to not ever fully do their job but a body that wanted more…
And you did, as best you could, and we watched with smiles and baited breath and anxiety,and we were anxious, fearful, but breathing with you in every moment.
You wanted to be a child…born to people who you could call your own and who knew you were theirs…
And you were, held at birth and held at your dying moments, with all sorts of mixed emotions. And we were humbled, knowing that you were always a son despite our impressions.
You wanted to be loved…loved for all you wanted to be and could be, loved for what you are and what you want…
And you were, by every staff member who dared to smile, play with you, read to you, change a diaper, adjust a trach, administer medications, call your parents, wave to you, laugh with you, hold you, silence alarms, sit you in chairs, help you exercise, sing to you, pray over you, and cry over you,
And we were grateful to be those people to love you.
You wanted to live…live in every moment and know life to the fullest you could,
And you did, even to the last day, and we are grateful, because you are a gift.
What did you want from life, sweet boy? Did you get it?
By the hands of this staff and others, their gentle hands and overflowing hearts, I hope you did.
May God hold you little one. Amen.