The Child First and Always

On Design Mom this week, I’m sharing ideas about supporting our friends who have children who are sick or have been hospitalized. Design Mom has such a caring community, and I thought it would be helpful to offer each other ideas about how to support friends when they’re in this difficult situation.

My dear friend Dianne’s son bravely faced leukemia twice, and she graciously sent me an email with kindnesses her friends and neighbors offered, as well as a wonderful list of the ways that she appreciated the children’s hospital where he stayed. That was just beyond the scope of my column on Design Mom, but too beautiful to go un-shared. Below are Dianne’s words about the wonderful place that cared for her son, and the ways they also cared for her family.

Primary Children’s Medical Center has this motto:  “The Child First and Always.”  Everything we saw seems to align with this.
a) One night, my son and I were coming back to his room on the 4th floor of the hospital, in the immune compromised section of the hospital (mostly cancer kids).  Somebody had just “called a code,” meaning they’d signalled a last ditch effort to preserve a life.  We were in the lobby by the entrance to the unit, and we saw folks in scrubs RUNNING, top speed, to that room, as if they had no other concern in the world.  They worked until sweat stood out on their foreheads, they ran for anything that was needed, and all attention was on the one little human in this world struggling to stay alive.  We ended up seeing this event again in critical care, and more distantly in another part of the hospital.  It didn’t matter if the kid was half grown or an infant, already damaged by brain surgeries, or brilliantly intact.
b)  At the other end of the urgency scale, we saw daily kindnesses by all levels of hospital personnel, including the custodial staff, who made it a point not to waken a sleeping kid, to respect bathroom privacy, or to help a teenage kid have a sanitized room but not interfere with a “guitar hero” game with friends. The social worker assigned to our son’s unit made it possible for him to have a homecoming night at the hospital, including figuring out a way to reserve the hospital theater for him, get his measurements for tux rental, and find a spot for dinner on the hospital roof at sunset. Homecoming night was also a real gift by his date.  She had been elected to the homecoming court, and she would have been honored if she’d gone to the high school dance that night, but she decided to spend the evening with our son. She wore her formal (giving a thrill to the little girls in nearby hospital rooms). And she spent the evening as if there was no where else she would even think of being, including the extra work of 2 hours of solitary driving to be there.
c)  We saw an impressively famous pediatric oncologist come back to the hospital on a Sunday night after one of his long-term patients had died.  He was off-duty, had no professional obligation or assignment, but simply came to sit with some bereaved parents and talk about what a great kid their child had been.
d)  There is a box that is a prayer roll where parents, friends, siblings, etc. can put the names of somebody for whom they’d like prayers offered;  I think it’s an interdenominational offering.
e)  Hundreds (maybe thousands) of cozy, charming, funny, lovely or comforting quilts are donated every year.  They come in infant size and fabric, or teenage boy size and fabric, or everything else in between.
f)  Celebrities, athletes, and other famous public personalities lavish time and attention on hospitalized kids.  This includes visits by Miss America, former astronauts, quarterbacks, Olympians, rock stars and Santa Claus. Non-famous people also donate time generously. When we were there (off and on from 2002 until 2009), there was a volunteer in ICU who spent 20+ hours every week holding babies, and he’d been doing this for more than 20 years, since his infant grandson passed away in the same facility decades earlier.
g)  Make a Wish is a local and national miracle that makes it possible for sick kids to go to Disneyworld, or to have a day as a fireman, or to get a pony, or a lap top, or meet LeBron James.
h)  The Jewish Community Center, just south of Primary Children’s, donates temporary gift memberships to parents of hospitalized kids.  This includes all amenities at a lovely and well-appointed health club, Gold’s Gym times ten.

Comments

  1. We’ve had many experiences with Primary Children’s, from emergency room visits, to a week long stay when my son had RSV. It is an incredible place and we are blessed to have it in our community.

  2. Emily says:

    The story of the man who came just to hold babies in the ICU has me in tears, what a wonderful display of love and the goodness that is still in our world.

  3. Chelsie says:

    Just read your post on Design Mom and had to reach out- my daughter has been off-treatment for almost exactly one year for ALL. She was treated at PCMC. There is a local support group for cancer moms with a private group on FB, meet up periodically, and generally love and support one another. I’m surprised by how much it has meant to me. If your sister is interested I’d love to get in touch with her. I hope Noah is doing well!

  4. Rachel says:

    Hi Amy, we lost our son tragically in seventeen years ago. I wrote a post about what kinds of things people can do for those who have lost children. I don’t know if this is appropriate or not, (I tried to find an email address to send this link to you) but I put the link below. What you said was just right, you say things in such a soft way. I love this series.

    http://r-eight.blogspot.com/2011/10/i-cant-imagine-what-youre-going-through.html

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