Needing Promotes Understanding

Originally posted on my Facebook page. Follow there for more mini posts.

When our daughter was first born, I felt so intensely alone. We didn’t have a definite diagnosis yet and we were thrown into the world of caring for a medically fragile infant.

We were fortunate, though. We got a diagnosis.

And that was certainly hard, but it came with a huge perk: a community.

We were able to join the CHARGE family with all its support and resources and care.

At some point, a few of us created a smaller facebook group for those of us who were new to the journey. Not because we didn’t like the larger community, but simply because we were starting out and sorting out the grief and fear that is inevitable at the start.

And I learned something over those years as the outside world became more hostile.


We were a group of moms with extremely diverse backgrounds and views and beliefs, but we NEEDED one another.


We were in the trenches just fighting to survive, fighting to help our kids survive.

And we were intensely aware that all of our kids were wildly different with wildly different needs in wildly different circumstances.

We shared a common diagnosis, but CHARGE varies so much in each person, that there could be no ‘shoulds’ applied to every new family.

What may be the primary issue for one family was a back burner issue for another.

We offered support to one another. We cried together. We cheered together. We shared our own experiences without judgment.

And we didn’t always agree.

But that bond we had established in those years of desperate need allowed us to give the benefit of the doubt, to accept our differences, to know that we were all just trying our best.

We still need one another, though as the years have gone by, perhaps not so desperately.

Which is good. It reflects how life is calming for many of us.

But I still think so highly of all of these women, these mothers, these friends.

Even though we think differently on things. Even though we have chosen different paths at times.

Because I know they are doing their best.

And I know that they are working hard to give their kids a good life.

I have sat in the trenches with them when we were all just shells of grief and fear.

Our need for one another allowed us to get to know each other deeply which has allowed us to weather the culture storms in a way I wouldn’t have thought possible for such a diverse group of women.

But here we are.

And I hope these friendships will continue long into the future.

And, ladies, you’re welcome for using a stock photo instead of a crazy one from one of the conferences.


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