For every action, there is an equal and opposite reaction. -Sir Isaac Newton, Newton’s Third Law of Physics
Today, class, we’re going to talk about physics. Okay, no, not really – we’re going to talk about microbiology as it pertains to one unique person’s physiology. Specifically, Gracie.
In a perfect world, no members of Gracie’s carefully selected care team would ever require replacement. Once selected, these people would devote the rest of their lives to helping Grace thrive.
This is not a perfect world.
We have lost doctors, therapists, and helpers through the years. Some of those losses are more painful than others – sometimes, it is a relief to stop seeing a provider who can’t believe it’s possible for Grace not to feel pain or won’t offer us any further help. Other times, it’s very sad to lose people we have come to rely on.
One of those people was Grace’s beloved school helper, Miss K. Miss K. was Gracie’s 1:1 at school for two years in a row, and she also nannied for us during the summer between those two years. Miss K. is a part of our family – I think of her as the little sister I’ve never had, and Grace absolutely adores her. We all adore her. Miss K. was working as Gracie’s 1:1 while she completed a master’s degree in special education with focus on becoming a teacher of the visually impaired. After two years of working full-time as Grace’s helper while studying, Miss K. needed to obtain a job in her field, and none were available in the Denver area. We were all devastated when she moved to the west coast, but it was the best move for her, and we are happy to support her in everything she does. We are happy for her – but sad for us. Saying good-bye to Miss K. was like losing a family member. She will always be a part of our family, though, and we will always love her as such.
It became painfully clear at the beginning of this school year just how much we relied on Miss K. We are now training a new helper, and while I think the new helper is a good person who has Grace’s best interest in mind, she is not Miss K. She doesn’t know Grace like Miss K. does, and she doesn’t understand how seemingly insignificant things can explode into full-blown, hospital-stay-requiring infections practically overnight.
Part of it is my fault. I was complacent with Miss K., and hadn’t needed to train her to do anything for quite some time. Now that she’s gone, I barely know where to begin to explain things to the new helper. I’m not sure she gets the gravity of the situation. I’m not sure if she knows that I’m not just being picky about wound care – little things can become life-or-death situations for Grace. And it shows – Grace has already had one ER visit this school year, and there is something not right with her right now. I’m waiting for it to blossom into something we can treat, but for now I know she is not well.
And that brings us to the second care provider we are training – the infectious disease specialist. After the incident with Dr. PC this June, we have switched care to his associate, Dr. S. She is nice, but she does not understand the complexity of caring for Grace. And unfortunately, the only way she’s really going to get it is for Grace to suffer some serious consequences. It is already starting; the finger infection that sent us to the ER on the day of Grace’s mermaid swimming party is flaring up again, and the hard lump of infection under Grace’s knee never went away after the hospital stay this past summer. Either one of these infections could explode overnight and cause her to have another extended hospital stay.
There is definitely something going on with Grace. She says she doesn’t feel well, she says her tummy hurts, she’s not sleeping well, and she’s had diarrhea. The finger that sent us to the ER is turning red again, and Grace even jumped when I palpated it a few nights ago – she said it “tickled,” which is a word people who don’t feel pain use to describe something that would hurt the rest of us. I emailed Dr. S. with a picture to let her know about the redness and “tickling,” but I haven’t heard back. I can’t help but imagine that she does not think this is as serious as I think it is. After all, she is used to typical kids – not amazingly unique ones like Grace.
There will be consequences to Dr. S.’s lack of concern, and unfortunately they will be suffered by Grace. There will be consequences to having a new 1:1 at school – these, too, will be felt by Grace. She is the one who will face the consequences. I can only hope she will get through it relatively unscathed, and the new providers will learn a serious lesson about who this little child really is.