{Medical Monday}: Sharing Our Perspective

Several weeks ago I received an email from the coordinator for the Family Advisory Council I serve on, asking for parents to volunteer to come in and speak to a nurse’s association about our experiences as parents of children with health issues.  I was not quite sure what to expect, but have been looking for a way to do more since joining the council, and this sounded like it might be a good option.  Oh, and I actually had the ability to be there when they needed me…..always a crucial part of the equation!!

I was one of the first Mom’s to arrive and got a chance to talk with the facilitator for the meeting that night.  She explained that there were 4 other mom’s coming and we’d sit at the front, share from some questions that had already been provided to us, then open the floor to questions.  All in all, seemed simple enough, but hard to tell exactly where this would go.

The other mom’s and I got a few minutes to visit before we went in, and in that time learned as much as we could about the things we were all facing.  I thought, as we walked in, that we were an excellent mix of parents for something like this….but really had no idea just how ideal it really was.

V is married and has two children. Her youngest, a son, has had medical issues since he was very young. Her older child though, a daughter, was diagnosed with a brain tumor a little more than a year ago…..an essentially untreatable brain tumor…and has just recently gone on hospice, having outlived what the doctors expected.

K #1 is single and has a daughter with Neuroblastoma who is continuing the good fight.

K #2 is married and had a child with Neuroblastoma that succumbed to this brutal cancer.

K #3 is married and a has a child with intractable epilepsy that at age 4 has already had 2 brain surgeries and is scheduled for another this summer.

And then there was I.

The mom’s and I spoke for a little more than an hour.  We initially covered our reason for being there…our kids.  Then covered the moments when a nurse had made a positive difference for us…..those times when it did not go well…..and finally, what we would want a new nurse to know before they got started.

It was an INCREDIBLE hour.  And that thought I had at the beginning, about how nice the range of circumstances were for something like this, proved to be profound.  We were an amazing panel together!!!  It was an HONOR to be sitting there with these amazing mom’s.

More incredible was that we got through….we touched these nurses and shared some of those vital things we all wish we could say to them.  And they heard us….really heard us.

At the end of the meeting, the facilitator said something that meant the world to me….she shared that she would be a different nurse the next day because of what we had shared.

In follow up, one of the attendees shared the following……

“Yes, thank you very much. The panel was so impressive – there stories sent chills down my arms and brought tears to my eyes. I only wish more folks could have heard. I’ve already shared some of their thoughts with 2 of my nurses and plan on sharing with more. One mom said, “You totally make my day by your initial interaction with me and my child.” Another said even if you’re busy, “Make parents feel as if they have your undivided attention when you’re in the room with us.” Another said that look at their child and realize that is their (mother’s) whole heart there.
 
Please let each on the panel know that as a manager often responsible for coaching my staff that they were helpful not only for me personally but also will be for the staff I encourage.”

I cannot begin to express how amazing it felt to get this opportunity…and to know we might just have made a difference for someone else.