The "Why"

After the many disappointments I've experienced this past year on the topic of Rachel... from people I trusted betraying me and strangers I don't know stealing and using Rachel's photos without permission on a video I would have never allowed her to be a part of... I had decided that I have seriously failed Rachel.

I decided I failed at protecting her.  I decided I failed at keeping her life beautiful.  I decided I failed at doing what moms are supposed to do - keeping her safe and out of harm's way.

I have spent months - since the whole thing happened with one of my board members in August - trying to figure out if this is really what God wants me to do.  And if so, how to do it when people are impossible to trust and my heart can't take any more pain.  I have prayed and waited and cried and waited and pushed it onto the back burner and had it come back only to push it away some more because I just don't. know. what. to. do.

This pregnancy being so difficult and emotion filled doesn't help at all and so I am currently thinking the best plan of action is to wait until after I have this baby, and also allow the huge changes that have taken place in my family time to settle down, before I make any decisions.  But my overall feeling is that I would be further along in my healing process if I didn't constantly have my wound being torn open again.... and it seems as time goes on, that's only more likely because these people seem to forget that I only know most of them because my daughter died.  And her death is still very real and very hard for me.  I'm still just a human enduring a loss too big to comprehend.  I'm still completely blinded by my grief at times and still a sinner in need of mercy and grace.  And I still very much need a lot of help in so many ways.  I'm just past the point time wise of where any of that is considered reasonable for anyone who hasn't walked in my shoes.

I'm pretty tired of "Rachel's Legacy" being referred to as an organization and not the memory of my baby girl because she is not an organization.  Her legacy is not a ministry.  I have an organization that I use to minister to others who walk this path - but Rachel's *legacy* is not that.  Rachel's legacy is about my very personal encounter with God during the most difficult days any mom could ever live... as I carried her to her death, buried her, and then mourned her young death and the gaping hole that leaves in my life and heart.

And I feel so often like I just fail more and more and that she (her memory) would be better off if I just stopped trying to keep it going.  I wonder at times if my fear of failing her is going to be what God eventually uses for me to give myself permission to stop worrying so much about the rest of the world and draw back into my little family - my first ministry - here on earth.  The truth is that my fear of failing her has been at the center of pretty much all I have done for the last 5 1/2 years... It's at the heart of all the beautiful things I've done and it's unfortunately at the heart of all the ugly things I've done.

I promised her while she was here that I would build her a playground... that I would bring awareness to her condition and be her voice to help people understand that she was worth it all.... that I would help other people walking the path that her & I walked together.... that I would do whatever it took to make doctors and the medical community see that babies with anencephaly deserve love and good care too.... and that I would never regret having her or forget her.  I promised her that she would always remain a part of our family and that her siblings now and to come would know about her.

And I know with all my heart I have fulfilled those promises to her.

I also told her that she made me a better mom... that I would always appreciate her siblings more because of her... that in every hug and kiss I gave them from the day I named her on, that she would be in every one of them...  I told her that the middle of the night needs they cried for would never again frustrate me or make me feel like I was being anything but blessed to be able to care for them.

And I can honestly say that all those things are true.

I know God will lead me in my next steps as I continue to wait and will prepare me along the way.  He always does.  It's funny though, I had plans on what I wanted to do this year for Rachel's birthday and started to feel like it wasn't right.  I started to question if being at the same hospital Rachel was born at, at exactly 37 weeks along again like I was when Rachel was born, to bring memory boxes to the labor & delivery floor, would be too much on my heart.  And with everything that has happened with 'friends' this year, and with how hard this pregnancy has been physically, emotionally, mentally... I was pretty sure I wasn't supposed to do any of it.  My shopping cart has been full with the items for the care packages for parents and siblings since August and I didn't ever have peace about clicking "order now".

Then a couple of weeks ago, I got a call from the hospital bereavement coordinator.  She said they are in the beginning stages of providing more support for the baby loss community and have some new things they want to do.  We talked for quite a while about all they have planned, which I'm really excited about.  She said that I have done such a great job memorializing Rachel and sharing her story that they wanted to know if I'd be interested in speaking at some of their support groups or meetings.  She said it wouldn't be for a while though - and finally, something felt right... I can't do much at this point in my life with all my kids being so little and just needing time with them... but in a year from now... ?  I just know God isn't done with Rachel yet.  It won't be in the same ways and honestly, that is a relief for me at this point in my life.  I've been craving a change but having no idea what that would look like or how to get there.

I just need to put my plans or expectations of myself or others aside and learn how to trust Him in it all... even in the hard stuff because He uses it ALL to guide me.... I look back over the last 6 months (and even the last 6 years!) and it has not been easy - but I can see His hand in even the most difficult things.  It's so hard to care about what He's doing for the future when the present hurts like crazy... but the big picture always reveals why even the most painful of things happens and the future outcome always proves that He knows best.  Some times we won't know the details of the 'why' on this side of heaven... but there always is one.

So, I planned to write absolutely none of that when I came on here!  I actually came just to share a comment I got tonight that reminded me that I have NOT failed Rachel... It was on the Truth About Anencephaly post I wrote in 2012 and when I get comments on that post, I am always nervous to open them.  Sometimes, depending on where I'm at emotionally, I will wait a day or two because people have said some mean things to me.  I opened this comment tonight and it was confirmation that sharing my heart here has not been in vain and that so many of my hopes have been made reality in the lives of others, especially the medical community, who will no doubt make a huge difference for those of us who leave the hospital without our babies.

This comment is a tangible seed of hope for me on this journey... it's proof that Rachel's life will be a gift in more ways than I will ever know, and hopefully even long after I'm gone.  I hope this beautiful lady becomes a nurse in the NICU, and I have a feeling that she *will* run into a baby like Rachel... I pray what she read here will make all the difference for the families she supports. With that and her heart to truly understand and help people,  I believe it will.  And that's what Rachel's Legacy is about.  This is the "why" that keeps me going....

This is what she wrote:

"Rachel is beautiful. You are both angels. I am currently studying to become a nurse and hope to work in the NICU one day. As I was sitting here reading my medical terminology book, I came across the term, "anencephaly," which was followed by a description that sounded too sad to be true. I thought, if I'm going to work in the NICU someday, I better read more about this and see some pictures to get an idea of what anencephaly is. I read a few articles, mostly containing definitions, pros and cons of aborting vs. carrying full term, and then I came across your blog. Your words drew me into your experience, and with each paragraph I felt I was sharing somewhat in your journey, crying, smiling (especially at Rachel's picture), and remember how important faith and God are. Thank you for your courage in giving Rachel life, and for writing and sharing your story. Rachel is a blessing to so many. Now I can have a better understanding and more empathy if I meet a baby like Rachel, whether someday my own or someone else's. Thank you and God Bless you and your family."