As the parents of a child with chronic special needs and foster/adoptive parents, we have had someone in and out of our home almost constantly for over a decade. Even before we ever brought Brynna home from the hospital we had to meet with social workers, DME (Durable Medical Equipment) companies, doctors, nursing agencies, and eventually, the nurses themselves. When we were in the NICU I read something in an article by another special needs parent that jarred me a bit. She said in a very casual manner that she "had to train a new nurse today." How does "just a mom" train a nurse? "Why isn't the nurse training the mom?" I asked. What does it even mean you have to train the nurse? We would soon find out.
Every child is different and so is every nurse
Over the years we've come to appreciate that even though a nurse has gone to school and learned how to generally care for children, that doesn't mean they yet know how to care for ours. Nursing skills are universal and apply to everyone. Personalities are unique. We have had many nurses come and go, some have left at their request, some at ours. Some we hated to lose, others we demanded couldn't stay. All in all, our nurses have been a real God-send to caring for a child with profound disabilities.
The one thing you learn quickly to rely on is the intuition of your child. Brynna may not know it's Thursday, but she knows crazy when she sees it! There have been a couple of times we had new nurses and from the time they entered the house, we knew it would be a one shift gig. We knew because Brynna told us. How does a non-verbal child do that? In our case, she moans like Dory in Finding Nemo and puts her face on the floor. If she is particularly perturbed she tries to yank out her G-button. That's always fun.
That's why it is so important to train the nurse. They need to learn who the child is, what makes them tick, what makes them happy, sad, or vulnerable. They must connect with the child to be truly effective. Especially our kiddos with autism like Brynna. If everything isn't jiving, they don't do well.
Occasionally we are blessed with the rare ones. The nurses who make nursing look easy. The nurses who would actually rather have any sort of bodily fluid or soil on their hands and clothes than do someone else's job for the day. The nurses who connect with your child when she can't connect to the rest of the world. The nurses who go the extra mile, then keep going, not for the money, but for the love of their patient. Jeanny was that nurse for Brynna.
Jeanny became Neenie
Brynna has been blessed with great nurses her entire life, truthfully. All of them go above and beyond the call of duty, work weird hours, handle poorly designed charting software, ridiculous expectations from nursing agencies, and still take fantastic care of her. But Jeanny is different. Jeanny is family. There have been others that were like family too, but Jeanny crossed over from being like family to actually being family.
Some days we would come home from work or an outing with the rest of the family and find that Jeanny and Brynna weren't home. A quick look at the phone would find a missed text or phone call: "We are headed to the park, Brynna wanted to ride in the big truck!" That meant her husband was leaving work to come to pick them up just so Brynna could take a ride.
Other days our phones would explode with pictures and videos from this park or that park, from the dock where they fed the fish, or the backyard of her house where they went to see the labradoodle.
Brynna doesn't warm up to very many people. Some days I'm lucky myself to get much more than an absent-minded wave! Not Jeanny. Brynna loved Jeanny more than my feeble words can express in the lines of this post. Jeanny ceased to be Jeanny the nurse, and became, Neenie, the third grandma.
Nary a birthday would pass, a Christmas observed, or a milestone achieved that Neenie didn't celebrate with us by bringing some little gift that was special only to Brynna. Her thoughtfulness of things Brynna loved was second to none.
Brynna loved to take trips to the Dollar store and go shopping. Neenie was convinced Brynna knew exactly what toy she wanted that day ... I think Neenie was right. They would parade up and down the aisles until Brynna found just the perfect trinket to bring home as a memento.
Losing someone special
In one fail swoop on a Friday evening, we went from one of the greatest nurses of all time to needing to find a new full-time nurse. We were heartbroken when we learned Jeanny wouldn't be back. Over the weekend they had discovered a tumor in her brain that needed immediate treatment. It was cancer. It took a few days for it all to sink in, but Brynna knew something was wrong the next Monday when Jeanny didn't come to work.
Today, several months later, we learned Jeanny has been faithfully and heroically batteling against her disease, but the journey has been long and wearisome. We aren't sure exactly what her future holds, but this we know: our Father is sovereign and he isn't surprised, shocked, or dismayed at any of this. He is lovingly holding her in His arms for whatever lies ahead. After the call, I sat on the bed and cried. Losing your child's nurse is hard. Losing a loved one is harder. I also cried because I knew there was no way to explain all this to Brynna.
We love you very much, Neenie. Brynna just blew you a kiss.