Four Things to Know

by | Aug 12, 2019 | Uncategorized | 207 comments

For those of you who don’t really know me (and those that do but want a reminder), here are four important things to know about me….

  1. I don’t take “I don’t know” or “Maybe” or “I don’t have an answer” for an answer. Translation: I am not satisfied with the fact that no one knows why Giacomo has damage to his hypoglossal nerve. I will continue to dig for answers, even if I don’t get them during this current hospital stay and need to seek outside opinions. One of the biggest motivating factors is that fact that my son, during these last three months, now has lost the ability to safely swallow even a sip of water or a morsel of food. So if there is any connection to that impaired nerve function (READ: the nerve that controls his tongue) and his inability to swallow, I will find it. The guy has already sacrificed so much, nearly lost his life, and fought so hard to be where he is, so if there is any possible way that I can offer him the opportunity to eat a cheeseburger, or at the very least, a few bites of ice cream, I will do that.
  2. I have a few guiding life philosophies, one of which is “Do your job, and do it well.” Translation: I am not satisfied with how the home nursing care has been “coordinated,” and I use those quotes due to the fact that it has not been coordinated at all. The hospital staff has known for nearly three months that we were going to need extensive nursing care in order to get G out of the hospital. They selected ONE agency, and that agency has produced only ONE nurse for us, not anywhere close to 8-12 needed to get him home, and that nurse is actually someone that I solicited via social media. By my standards, this is not “doing your job well,” so I have decided to add the job of “nursing care coordinator” to all the other things on my resume to find home nursing care myself for Giacomo. Oh, and I actually did my job well, and it looks like my boy is coming home! Not today, not tomorrow, but we hope in a month! There is still room for a couple more nurses on his team with Bayada Pediatrics, so if you’re interested or know someone who is, have them contact Nicole, their recruiter, at 651-482-8400.
  3. I am a seeker of reason and rationale, especially when it comes to my kids’ health. Translation: While, at face value, it is not at all reassuring to find out that your daughter’s MRI shows white lesions on many parts of her brain, as well as signs of overall atrophy, this abnormal scan of her brain gives us a VERY solid explanation of her cognitive impairments, her lower emotional intelligence, her diminished executive functioning, her visuospatial struggles, and is actually a common finding with people with myotonic dystrophy. Granted, typically all of these brain changes are not seen at such a young age, but it is at least providing us with a baseline for her current “normal.” Her neurologist is hopeful that the decline we have seen in her these last couple of years will stabilize and that these changes won’t affect other organ systems for a little while, so we can focus on her mental health and give her the best supports possible and home and school, as we now know exacty WHY she is the way she is.
  4. I think that a little yoga can fix just about anything, at least temporarily. Translation: I don’t know how I would have survived these last 85 days without my random moments of practicing yoga. I have rolled my mat out in my room, in the dark, on the lawn, in the exercise room on the 5th floor, morning, noon, and night. I have even made time to go to my favorite classes, on occasion, now that G is doing so much better.  However, the best, most therapeutic, healing practices have been out on the playground with Giacomo, sans my mat, and with him as my fellow yogi. For many weeks, he only watched, practicing vicariously through me, but gradually I was able to get him to do a little meditation with me, then some focused breathing, working our way up to a few partial sun salutations, a tree pose or two, much-needed hip openers, and today, he found his way into his first downward dog in months. This tiger yoga mama was so proud of him, as we both felt that he finally had the confidence, strength, and trust that his trach tube wouldn’t come out, while he got his blood stirring, his soul moving, and fresh air into those hardworking lungs of his. Namaste, my son. (Translation: the light and the teacher in my soul recognizes and honors the light and the teacher in your soul.)

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