/ kids + chronic illness \

This is Winnie, one of my daughters. She turned 3 years old today. I have lots of feelings about being a mom with chronic illness. It has been a dichotomous journey between feeling like I’m not enough and giving myself grace. My inner monologue plays both of these parts pretty well- though tends to favor the “Im not enough” camp, even though my brain doesn’t actually believe this to be true. I don’t think I’m alone in this experience.

The truth is, I had dreams of shared experiences together that I just don’t think will ever happen for many reasons. Being outdoors has always been important to me. Riding bikes, hiking, swimming, or having them try things like skiing. Currently though, most of these things are incredibly challenging or impossible. It’s exhausting just to take a trip to the beach, or getting them out to build a snowman. I do the best I can, I just wish I could do more.

The other thing I think about is the genetic component to my diseases. They both exhibit signs of EDS and/or MCAS. Though I’m thankful we are getting answers (knowledge is power after all), the possibility of passing down to them what I have breaks my heart and fills me with guilt. I know I know, obviously I didn’t choose this path for my girls, or myself for that matter. But mom-guilt isn’t always logical.

It’s been important for me to allow myself to feel both the ups and downs of this journey. The thankfulness and grace, as well as the grieving and frustration. It’s a complicated road. A lot of times people try and cheer you up from having more challenging emotions. Sometimes we don’t need someone to make us “feel better”, just be alongside for the journey and let us feel our feelings. I don’t live in the land of feeling like I’m not enough, but I visit there from time to time and I think that’s pretty normal. Then I get back up and remember my kids know that they are loved, that they are seen and known. Those are the things they’re going take with them moving forward. And that is more than enough.




#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #kidsandchronicillness #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

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