Saturday, February 07, 2015

Over the last year I have come back and thought about what to do about this little journal.

I don't want to leave it. It's my grief tossed out to the stars, scattered and messy. I know that someone is reading it- and I don't know if it's a mom who is looking for answers to her baby's diagnosis, so I can't remove it. I do have the occasional desire to write about my feelings... And I started this as the small place where I kept her alive.

A number of times I have stopped and started projects here. Most of them projects that other loss moms were doing, and some that fit this new "Christian mom blogger" niche that's popped up over the last few years- I thought that was what I as supposed to do. Everyone else is doing it, after all.

None of the projects seemed to fit. 

But the last few months things have taken off in an entirely different direction-

Over these last few months I have devoted a significant amount of time to the website that my family began in honor of our sweet Beatrix. It's a place where parents who are looking for answers can come and find them. We had started the website a year after she was born, but it sat relatively unattended to for a while. (If you'd like to help us, we could really use it- we are working on becoming a 501(c)3 organization, but it's a lot of work- and the fees for domain registration and hosting aren't inexpensive. You won't get a tax receipt-yet- but you will be helping create a space for helping people who have received this diagnosis and who have decided to continue their pregnancies.)

I have also been talking to moms who have suffered losses due to LBWC. I am always hungry for stories about their babies- as much for my benefit as theirs.

In addition we have been able to connect with some professional medical organizations about collaborating on genetic projects related to LBWC, and projects related to advocacy for rare diseases. 

Lastly, we have started talking with a national pro-life organization about how we can help change our culture. No baby's life should be cut short because they are different- and parents need to know that carrying to term is an option.

There is so much more to be done in my Beatrix's name, than grieve. I think after four years it's time to begin making certain that her life wasn't lived in vain.

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