By Rachel, Ella’s mom
Ella has Nemaline Rod Myopathy and an immunoglobulin deficiency. Her skeletal muscles are profoundly weak, which makes endurance difficult and breathing on her own for long periods exhausting. Ella was trached in 2016 after getting RSV, an ear infection, and a bacterial Pneumonia all at once.
Ella does not fit anyone’s mold or standard definition. She is super strong compared to 80% of Nemaline kids, but the beating her lungs have taken over the years makes her really susceptible to illness and atelectasis. She is strong enough to never want to be tied down, but she needs strong ventilation and humidity regularly. She is brilliant and talks all the time. So, any nurse working with Ella needs to love kids and be willing to jump on into any activity so that Ella can participate with her friends and family.
We joined Aveanna in 2014. I think Jacob joined the team in early 2017. I’m not sure, because I can hardly remember what life was like before Jacob! He is always looking to learn more about Ella’s care. I never have to worry for a moment when he is on shift. Honestly though, what I love most about him is his willingness to be Ella’s legs or arms or whatever she needs so that she can keep up with her friends.
I have watched Jacob basket carry Ella through a game of tag. I’ve seen him take her to the top of the biggest slide and jump down to meet her at the bottom. I have watched him recruit some of Ella’s friends as supporters to stay inside with her for treatments or if it is just too cold or hot for her on the playground. I am forever hearing Jacob tell Ella, “‘I can’t’ is not an option. ‘Can’t’ is not allowed in your vocabulary!” And then he shows her how she can.
Jacob quizzes Ella on spelling words on the school bus and makes her rewrite her math when it’s sloppy. He does what I wish we could do, but we have to work and take time to coordinate Ella’s schedule and insurance and doctors and appointments, and etc. That means that we work a lot of extra time. Jacob fills in the gaps so we get to just be mommy and daddy with the time that we have. That is a gift I can never repay.
Showing up in suit and tie for Ella’s “Dress Your Best Day” at school is just one of the very many special things Jacob has done for us. On top of top-notch medical care he provides for her, he brings in board games and cat memes, concocts science experiments, bakes cakes for her to decorate, and a whole bunch of other things that make him so special to us. Jacob is more than a nurse – He’s a healer.