Saturday, February 14, 2015

LifeNews Readers- please read this!!!!!!!!!!!!!!!

If you have come to this blog from the opinion piece that I did for Save the 1, and which appeared in LifeNews- please do me a favor....... It will only take a few seconds and will make some moms and dads super happy-

Every year around Valentines day, a blog called All That Love Can Do hosts a "Love Letters" Series for families who have lost children.

Because I like to pay it forward, I would love if you would stop on over there (please read this entire statement before doing so...)  and leave a sweet note for these moms and dads, so that they know that other people are thinking of their babies with love today. I can not express to you how difficult holidays are for the parent who has lost a child- and a "minor" holiday like Valentine's Day is no different- no crayon cards, no hand print hearts.... no character cards to bring to pre-school..... The number on thing that every loss parent wants is for people to remember their babies. You could do this- remember with them.

********Keep in mind- All That Love Can Do IS NOT a blog that serves any sort of activism purposes- so just leave love comments, not anti-abortion comments.... while it is carry to term, it's not the right place for it. It's all about the LOVE today...

Friday, February 13, 2015

Today, I have written my first blog for Save the 1, a pro-life organization which advocates for the lives of babies general included in pro-life "exception" laws.

This is part of the direction that I will be moving towards from now forward, and when I do contribute, I will be linking posts here.

This blog will, however, remain focused mostly on grief and loss, and my efforts with the limb body wall complex website and support group.

Saturday, February 7, 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.

Saturday, January 24, 2015

Tonight is just about remembering.

The weight of her body in my hands as she slowly slipped into the great beyond. 

The softness of her skin against mine.

The other night I was driving my car, and one of her songs came on. I cried, for the first time in a long time. A big, ugly cry.

I cried for her little life. I cried for my mother. I cried for myself, suspended like a bridge between these two women. 

I sometimes have this feeling in the palms of my hands- they are electric. Those are the times that I miss her the most. When she is missing from me. That electricity is the weight of where she rested. A memory imprint on my flesh.

I miss her, and I miss her. I'm full of missing and empty and wanting and electricity.

My lifespan isn't enough to keep hold of all of this energy. I hope to have them both, when I close my eyes. 

Tonight is just about remembering. 

Tuesday, January 6, 2015


Please pray like you have never prayed before-

There is a little boy who is surviving with Limb Body Wall Complex, against the odds.

Wednesday, December 17, 2014

What People Still Say. After Four Years. Unsolicited.

You Didn't Even Know Her, 
How Could You Possibly Miss Her?

I wish you could remember her with me-
what does it take away from your life?
An uncomfortable feeling that you can walk away from, 
when you choose?
But you can't, and I understand. 

Her body makes you cave and it reminds you of where you came from.

Her small self took up so little space in this space.

My remembering takes up so little space in the world.

If you do not want to remember her with me- please leave me to miss her myself.

It's Been Four Years Now, 

It's time to let go

You never held her- her tiny hands were so graceful.

Because you did not hold her,  you can not possibly understand how difficult it was to let her go.

When you say "move on", you really mean- be the who that you were before she came.

When you have touched something so precious,
so beautiful-
you can never be who you were before.

I Know That You Don't Understand Right Now, 
But This Is All Part Of God's Plan

A most pervasive myth. 

Death was never part of God's plan- 

She is so very beautiful.
I have a finite amount of time and energy in this world- 
not nearly enough time to illustrate
why I will always be changed.  

Why I will never stop missing her.

Why I will never get over her-
whether it's been four or forty years.

Why I will never believe that it's 
part of God's plan that my daughter died.


as long as I'm here and she's there, 
I will tell the world about her. 

Saturday, December 13, 2014

She would be four today

I saved my sleep for later, wanting to sit alone while the new day began. 

She would be four today. 

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