A few words from Jacob's nurse Libby in light of Mitochondrial Awareness Week. How lucky we are to have Libby on Jacob's team.
My name is Libby Neumann and I am Jacob Hallberg’s night nurse. I am an RN/BSN and I believe that I have one of the best jobs in the world.
After initialing being trained in the Neonatal Intensive Care Unit at The Children’s Hospital and at BoulderCommunityHospital, I realized I wanted to have a stronger connection with my patients and their families, one that I could only get by providing home health care. I pursued a local agency that specialized in pediatric patients and worked for a few different families before finding my “home” with Jacob. I immediately connected with Jacob and his family and it really did feel like home within a few months of working there.
Every evening I show up at the front door and I am welcomed in by Maria or Joakim, (mom and dad). They fill me in on Jacob’s day, the good and not so good, the concerns, etc. and we chat and sometimes brainstorm together about the best plan for the evening. We also catch up on each other’s day, and they fill me in on Sarah’s adventures, their oldest daughter who I’ve come to love as well.
Home health can be tricky. It is a fine line to be in someone else’s home, caring for their child, while at the same time maintaining protocols and frankly, setting up shop. It is one thing to be allowed to do that. It is completely different when a family not only welcomes you but goes out of their way to make sure you are comfortable in their home, make sure you have what you need to provide the best care for their child, and work with you, as a team member, to make sure that their child gets the best care possible.
And he does. I adore him! And, I trust him and respect him and continue, everyday, to understand him. Jacob has taught me so much. I had never cared for a child with a mitochondrial disorder so I’ve learned a ton about what that means specifically for Jacob and generally for other kids. His disease and its progression had been such a reminder for me about life and staying present and appreciating all of its gifts.
Every moment I’m with Jacob we share a gift with each other. It might be as simple as a kiss on the forehead. Or the blink of an eye. Or a wonderful, big Jacob sigh. There is nothing like a Jacob sigh! In one breath he’s telling me he’s fine or he’s going to be ok or he’s coming out of a seizure or, “no thank you, I don’t need any more narcotics!” What a gift!
I don’t know how long Jacob will be in my life. But I do know that for now, we’ll be here for each other. And that every night I drive to work, I’ll keep cranking the tunes and rocking out thinking about how happy I am and how fortunate I feel to be part of his team.