My favorite toddler in the whole wide world has decided for the last several days that screaming at me is the key to his happiness. He screams at me when he’s happy, sad, upset, angry, etc. It’s like he’s just discovered that he can speak in whatever volume he wants and the dial got stuck at MAX. Come to think of it, that’s probably exactly what happened. There isn’t enough caffeine or headache medicine in the house to help my headache right now.
As some of you have already noticed, I’ve been publishing a little less frequently this past week or two. This will probably continue through early October because, well, life happens. Our son is continuing to do well. We have a lot of doctors appointments in October, but nothing we can’t handle. Unfortunately, our son’s need for additional attention and care doesn’t preclude other things from happening.
It’s been a while since I mentioned the book, but I wanted to let you all know it’s coming at long last! It’s available for pre-order right now. It’ll be released on October 15th, in less than a month. I know, normally pre-orders last longer than that, but my life is just too unpredictable to commit to a specific date a lot of times.
A “Medical Mom” is a mother of a child with medical difficulties. Typically these mothers have been through one or more hospital admissions. Their child may or may not have a diagnosis. At first they’re frazzled and unsure, but over time they become staunch advocators for their children and their medical needs. My goal is to reach the frazzled and unsure beginners and expedite their development into the advocates their children need them to be.
Everyone makes mistakes, and we all know that. We’ve been told a million times, “everyone makes mistakes, don’t beat yourself up over it.” That doesn’t quite help at the moment though, because the stakes are a bit higher than they’ve been in the past.
Forgot to turn on the pump last night? That’s less calories a continuously fed child is going to get, and it’s not hard to do. Even more common, your child rolls just the wrong way and disconnects himself from the pump. He doesn’t wake up because he’s exhausted, and you have no idea. When one of you finally wakes up, the bed has gotten all of the feeding and some stomach acid. You try to prevent it, but nothing is fool-proof. Besides, you can’t connect it too tight because it needs to release if your child gets tangled in the tubing!
I have a love hate relationship with our son being undiagnosed. On one hand it allows me to be confident whatever he’s struggling with is not on the list of common issues with a poor prognosis. On the other, there’s no specific medical term to tell people when they ask why he has a feeding tube, low muscle tone, and random spells of fever for no obvious reason. I have met other mothers who have children with similar problems in online support groups, but most people have never heard of the combination of symptoms we’re dealing with.
It’s sometimes difficult to understand what your primary care doctor is trying to tell you, but they’re used to explaining. Some can tell by the look on your face you don’t get it, and immediately just give you a five second rundown of what the term they just used means. Even better, many primary physicians don’t hardly use medical terminology at all.
Your child’s pediatrician is similar, but what happens when you have more than just a pediatrician? Medical terminology is a massive hurdle to overcome. If you’re working with a specialist you’ve never seen before it’s especially overwhelming. First, here’s a list of things you can do to ease the pain when talking to a new specialist, or a familiar specialist about an unfamiliar problem.
Everyone’s experience is slightly different. Expect there to be some variation between your experiences and mine. Please, do not take any information in this post as medical advice. Any suggestions are simply that. Please do not take anything written here as reason to go against orders of your child’s doctor or nurse.
Before you leave home, I recommend taking the following with you:
When you arrive at the hospital you’ll sign in and be invited to have a seat in the waiting room. The time of your surgery depends upon the age of your child. The youngest go in earliest in the morning. They’ll call you back when they’re ready to start with the paperwork and introductions.
No matter what you do, people are going to judge you. It’s the culture we live in right now. There’s this overwhelming expectation that everyone needs to be perfect at everything they do.
Sometimes it feels as if there’s no end to the guilt hoisted upon me by others. Generally, these statements come in the form of, “You SHOULD [insert thing].” While there’s no reason the word, “should,” need be entirely removed from the English language, it’s frequently the word choice of people when they want to use guilt as leverage to direct me toward a different course of action. Guilt comes in two forms.
Struggling to Thrive 