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    • #14751
      Bailey Vincent
      Keymaster

      “How are you doing?” my colleagues asked yesterday, while rushing in to work.

      “Totally psycho,” I replied… and I super meant it.

      Yesterday was an ordinary weekday- homeschooling my girls, writing a column, doing admin work for my dance company, and attempting to prepare for another late night at the theater- but somehow, I felt completely “off”. My girls were arguing more than normal. My body was sluggish and misbehaved. Everything was taking twice as long as it normally should… and I honestly cracked. In no uncertain or pretty terms, I had a mini temper tantrum before rushing off to get my daughters where they needed to be (“I don’t have enough time!” sort of thing).

      Yes, I didn’t feel well and didn’t have enough time to “listen to my body”, as we are told to do, but… I also had no alternative. There is no other person to tag in to take over as mother. There is no other person to get me from Point A to Point B. There isn’t even someone to get me to or from my doctor appointments or surgical post-ops. If my body can’t make it happen… It doesn’t happen.

      Here is my question today:

      How much of a village do you have?

      Are we somehow less if we don’t have a big one? I have an amazing group of friends and family, and love the loves in my life, but my life is still not built like social media should have us believe sometimes.

      It takes a village… but sometimes we need a bigger one.

    • #14761
      Jenny Livingston
      Keymaster

      My village is small, and that used to frustrate me. Especially, as you mentioned, when I’d see people with bigger, more involved villages online (or in person during my hospital stays – some people seem to have endless parades of visitors and gifts being brought in).

      I’ve had temper tantrums like you describe many times over the years.

      A couple years ago, my partner said something to me along the lines of, “You expect too much of people. You should try to be grateful for what people are willing to offer and stop expecting them to be more for you.” And man, that hit hard. I wasn’t happy about this at first, but… he’s right.

      Here are some things I’ve learned about my village:

      My mom is always there for emotional support, but often can’t be there physically or provide tangible help. And that’s okay.

      My dad can always be counted on for transportation if I need that. Several times through the years, he’s called off work to get me to and from appointments or hospitalizations. He’s distanced himself emotionally and doesn’t “get” many aspects of life with CF, but he is always, always there to get me places. And if that’s all he can do, that’s okay. (I should add though, that we’ve recently breached the barrier into some more serious conversations regarding my health and life… so there’s hope!)

      My brother and sister in law are always willing to provide childcare when needed. They are my daughter’s second set of parents. If they’re unable to be there for me in any other way, that is completely fine because what they do offer is huge!

      This isn’t an extensive list, but I think you get the idea. I’ve come to learn that not everyone can be there for everything, and that’s okay. I’ve stopped expecting them to be something they’re not. I’m learning to take whatever help I can get and be grateful for those things rather than resenting what’s missing.

      Together, we get through some really tough things and I am SO INCREDIBLY grateful for the village that I have. I’m sorry you’re struggling. I’m sorry that sometimes our villages, no matter how much they love us (and there’s no doubt that they do, tremendously) they sometimes can’t provide the help we so desperately need.

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