I recently sent a DM to an IG friend and shared about the unseen hard days. As a parent of a child with a chronic illness there is much in our day where IG stories can not fully capture the struggles we face on the daily. When I’m asked how Dakota is doing, I often don’t know how to answer that question. How do I provide enough context while protecting my daughter’s right to privacy? How do I convey the real challenges she faces, where one can fully grasp that this is a forever thing, that one day could be good, and then the next day can be rough as heck? How transparent do I get, while protecting myself as I walk through a perpetual cycle of grief, and give myself permission to say, “I don’t want to talk about this today.”? How do I have faith in the midst of the continual unknowns?

Friends, all I can say is this is HARD. It’s COMPLEX, it’s NUANCED, and it sucks. But if you are like me, a parent, caregiver, family member to someone with chronic illness or a disability, I want to say I understand those unseen hard days. You my friend aren’t alone. There are so many of us walking through these moments, while not the same, we stand in solidarity together as we advocate for our loved ones. And with open arms, we welcome those who will cross over onto this side of being new diagnosed and when the overwhelm consume you, we will be here.

In the midst of those hard unseen days, may we acknowledge our grief, our new normal, and may we embrace what we can not change. But in it, beauty, fullness and purpose can be experienced and lived. Hope and joy can exude us as we navigate through the day to day.

So friend, when the next unseen hard day comes…. may we breathe, may we acknowledge, and may we feel all that we need to feel.

Until next time,

Jasmine