3 Things to Know About Caregivers

I like this numbering/list format. Expect to see more of it.

The title of this post is really general, but the content is more specific to raising a child with Cystic Fibrosis. While Lyla isn’t necessarily sick, I do have to constantly keep in mind, that if she does get “actively” sick, it could be bad news. Either way you chalk it up, it can be heartbreaking and all-consuming raising a child, or caring for a loved one, with any kind of specific needs. It can also be the most wonderfully moving event of your entire life. 

1. Raising a child with health concerns has made me really selfish. I cannot help it. I hate that fact. My mind literally can only process and focus on so much. Obviously, Lyla’s health is number 1. A lot of extra noise or commotion really gets to me. We have a big appointment coming up at the end of this week, and it dawned on me how irritable I have been. This happens every 2 months, when we have a clinic appointment. All of my “brain energy” goes to fattening up my toddler. If we get to this appointment, and her weight is low, that falls on me, especially as we approach cold season. I don’t like to “fail” so needless to say, there’s already quite a bit of unnecessary pressure taking over my life. 

2. I need to preface this, by saying that this isn’t meant to sound passive aggressive in light of some recent real-life events for us. I’ve come to the realization that a lot of people simply don’t “get” CF, and that’s ok. Something to be aware of - If my daughter happened to contract pneumonia, she could die. That sounds super dramatic, but it is true. She. Could. Die. Granted, Lyla’s lungs have been pretty great up until now, but it’s not something that we’d even entertain playing around with. I could get into the science and reasoning behind why this could happen, but honestly, that’s not as important as simply knowing the horrific, and unfathomable, repercussions. If you have a respiratory infection of any kind (especially pneumonia), and know that you could be around susceptible patients, small children, or the elderly, please use some common sense. Actually...that goes for any kind of bug or sickness. Err on the side of caution. You know, so no one dies. 

3. Please do not say that my child is spoiled. She’s not, and it’s rude/not cute or funny. I spend a lot of quality (and quantity) time with Lyla, and she’s come to expect that. That part can get a little tricky, and it’s up to me, her mother, to support more independence. I always planned on being a very hands-on parent, but when I was pregnant, and thought that we’d be spending most of our time in a hospital; or I’d only get around 20 years with my daughter, I decided not to waste one single second, or take one little tantrum or long day for granted. Things have brightened up quite a bit, in her future, but life can be short, and it is incredibly precious. So yes, Lyla gets most of my time and energy. No, I don’t worry that she’s spoiled by that fact. Personally, I don’t see how dropping what you’re doing to play or help your child, or sitting on the floor to engage with them is spoiling. If we were buying her tons of toys and giving her candy all day, that would be a different story. I’m obviously a tad sensitive on this one. My time with Lyla is the most precious thing in my world right now, and I choose to spend that time lovingly and meaningfully, simply put. 

(While we’re at it, I really have a problem with calling little girls “brats” or “sassy” because they say no when they don’t want to do something; or like girly accessories or toys). 

Hopefully this can give some insight into how us caregivers can feel at different times. You never know what someone is really dealing with, and how draining or worrying it can all be. (If anyone knows how to NOT use pizza as a crutch, please let me know. TIA). 

XO