The journey is never easy

Last year, one of our former inpatient and CogRe graduates spoke at the Foundation Gala. As I listened to Matt Peltz share his journey of recovering from his traumatic brain injury, he referenced how different his life is after the injury.

He didn’t talk about how  much he missed out on or how hard he had to work, but how the injury opened up a new calling for him to care for others the way that he was cared for by each of you.

Matt is now working with adults at Bancroft – leading nonprofit provider of specialized services for individuals with autism, brain injuries, and other intellectual or developmental disabilities – in the traumatic brain injury program. He talked about how "wild" it is that he is now coaching and helping people face the same challenges he has  and the empathy he has knowing exactly what they are going through.

There is something extremely powerful for a patient and their family to see this young man – who has now completed his undergraduate in Psychology from Penn State and his graduate degree in Social Work from Rutgers – helping others the way clinicians helped him.

In creating the Family Faculty positions almost 10 years ago, it was our hope that we would be able to provide this type of “in your shoes” support to families, and they certainly have. The Family Faculty members partner with Children’s Specialized staff and parents to navigate the journey of recovery and disability for their children.

Many of you have probably heard Nancy Panarese's story about her anger when her grandson was diagnosed with cerebral palsy and how that manifested itself in her behavior with staff. She couldn't control the diagnosis but she so wanted someway to make it better. And in retrospect, she had to work through this process to get to personal acceptance.

During a recent visit in on the patient floor in New Brunswick, a parent had just had a major melt down. The staff was upset and I could sense the feeling of helplessness at not being able to address this parent’s concern. The reality is that this mom was devastated by her son's injury and her frustration just bubbled out. Staff did a great job of diffusing the situation and getting things back to normal, but it was definitely a tough day for all. 

Today I think back to Matt. The journey isn't always a straight road or the even road that we wanted to be on. But once on that road, we are trying to give our families and you, the support we can to help people through that journey. Both the clinical skills and tools, and the supports like Family Faculty to help us walk with people on their journey.

Some days are easier than others.

Matt’s journey has taken him five years. Now I see a strong young man, who has dedicated his life to helping others. The gift of compassion you all have given Matt, Nancy, and every parent or patient going through probably the toughest time in their lives, is just as important as the physical recovery.

Thank you for your continued efforts each and every day to help our children and their families on their journey that brought them to Children's Specialized Hospital.

I have heard from many of you that you are struggling with our changes in focusing on trying to serve more kids. We are focused on this because families have told us that they are really struggling with the limited availability for appointments. 

You have said to me "I don't like all the pressure on productivity or I wish it could go back to the way it was." Children's Specialized Hospital has the word Children first for a reason.  

We are here to serve and care for the children. That is why we all work so hard—to improve the lives of the children who need our care.

One of the changes we are going through in health care is that in large measure, the health care industry as a whole asks patients to work around what is good for the clinicians.  

An example is why would we ever need to take a child who is not critically ill to the emergency department if the parent was unsure that emergent care was needed?   Wouldn’t it be easier to virtually see a physician on call via Skype or FaceTime? Then the parent and doctor could decide together whether the child would be needed to move from the home? We haven’t adapted enough in health care.

My point in linking these examples is that this all is part of our own journey. In the period of change we are going through you may feel frustrated and you may find it difficult to see what the end game is. I truly believe the organization that partners with families to find ways to deliver care in a way that has positive outcomes and empowers families will be the organization that has a different place in the landscape.

So what is my point? Just like with Matt Peltz, his brain injury has created tremendous opportunities. Through this time of change and pressure, there will be opportunities that we can't clearly see today but we know that if we continue to stay focused on increasing access and responding to our patients’ needs, we will get there and be stronger than we ever could have imagined.

So does this resonate with you? Can you see the pathway?