Thursday, March 31, 2016

Doing things (on Star Legacy)

About a year ago, I organized a Lending Library for our local pregnancy and infant loss support group.  I was frustrated by the lack of related books our public library held (way to make me feel even more isolated), I was frustrated by buying books on Amazon that turned out to be crap, and I still had a long list related to stillbirth that I wanted to read.  I received about thirty book donations, made labels to dedicate each book to a baby, made a list of available-to-borrow book titles, and turned them all over to the support group leader (after reading most of them).

My next project was in honor of Lydie for her first birthday.  I fundraised money for a Cuddle Cot for the hospital where Ben, Lydie, and later, Josie were born.  Enough funds were donated not only to buy the Cuddle Cot but also several Moses baskets.  We officially donated the Cuddle Cot on Lydie's first birthday, and I wrote a letter that families at three different local hospitals receive when they have a perinatal loss.  I included my contact information and I've heard from several local families after their losses.  Sometimes it's hard for me to be taken back to the fresh grief, but I want them to know that they are not alone.

I'm a do-er.   I like to make things happen. I get frustrated when there's a lot of talk and no action (although my husband may sometimes disagree with this - ha!).

So now what?

What's next?

Soon after Lydie died, my mom and I were talking about where we could direct donations in her name.  My mom mentioned Now I Lay Me Down to Sleep, and while they are a very noble nonprofit and I will alway be grateful for our photos of Lydia, I found myself saying, "But they just offer comfort after babies die!  Why isn't anyone trying to stop the babies from dying in the first place?"

One in 160 babies are stillborn in the United States. 26,000 babies are stillborn a year.

Perfectly healthy mothers at the end of perfectly healthy pregnancies are losing their babies.

Perfectly healthy babies like Lydie die every single day.  (Around 72 babies in the United States alone every single day.)

I stumbled onto Star Legacy Foundation.  Their mission is to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth.  They work to educate not only pregnant women and families but also medical professionals.  They have a Medical Board, and work closely with Dr. Jason Collins, that one lone doctor who studies cord accidents and believes they are preventable.

They work not only to comfort families after loss, but to save babies.  To save lives.

That was where I wanted Lydie's donations to go (and to NILMDTS as well).

Over the next year, I got to know the directors personally.  A mother-daughter team, Lindsey and Shauna.  They started Star Legacy when Lindsey's first child and Shauna's first grandchild was stillborn.

They wanted to do something about it too.

Star Legacy is located in Eden Prairie, Minnesota and though obviously their research benefits all of us, most of their supports are offered locally.  As someone who has found my local support groups lacking and has cycled through three different grief counselors before finally giving up counseling all together, this is a frustration.

So, recently, Justin and I have been in communication with Lindsey and Shauna about creating an Ohio chapter of Star Legacy.

I'm overwhelmed just thinking about it.

To be fair, I'm overwhelmed with my life in general-- my needy and demanding (and lovable) almost-three year old, my adorable five-month-old, who doesn't like to sleep but loves to breastfeed, my grief, and my full-time job (and finding the time to pump three times a day while at it).

And yet I still feel called to do this work, to honor Lydia in this way.  To contribute to the field of prevention of stillbirth.  To raise awareness of stillbirth.  To do something.  It's a productive use of my grief and makes me feel more connected to my daughter.  It's a way to continue to mother her.

So far, we are discussing planning a 5k run/walk.  I am a runner; I love to run (which is helping my pants finally fit again!)  But I know nothing about planning a run and I bet it is A LOT of work.  We are thinking about trying to plan this for the fall, which would be great timing with Pregnancy and Infant Loss Awareness Day on October 15th and Lydie's birthday on November 6th.  But does that give us enough time to plan?   And where will we have this?  Do we have to close off streets, measure mileage, have police there, get timing chips, provide water stations and food at the finish line, give awards?  And if we did all this, would people sign up?

Our other idea is to plan an educational retreat for Labor and Delivery staff.  This seems doable because of the connections I still have with Lydie and Josephine's nurses.

Lindsey suggested first assembling our team.  I'm floundering a bit here.  Right now, our team consists of Justin and me and possibly my sister.  Lindsey wrote a blurb on Facebook asking for others to volunteer and so far, I've heard from no one.   And I could certainly use some help here.  Anyone, anyone?

Am I crazy?   Is this something I should be pursuing?

Suggestions welcome.


  1. I'm in. I would love to help honor our babies in this way. Just let me know what you need and I'm there!

    1. You will be hearing from me, woman.

  2. I have a lot of resources helping students orgs on campus plan 5K's. It can be a little time-consuming but I think you'd have plenty of time to implement something in the fall. Happy to send information your way!
    Joey Sammut

    1. Joey - so good to hear from you. I didn't know you were following along. Would love any info you have that might be helpful in planning a 5k... we are kind of stuck on where to even begin. Hope you are doing well!

  3. I'm in awe of everything you have done and are doing to honor Lydie and to help others who have experienced stillbirth. You've inspired me to look into getting a Cuddle Cot for the hospital where I delivered.

    I'd love to help you organize a 5K if we lived in the same place. Seriously, so inspired by you.

    1. Let me know if I can help with the Cuddle Cot for your hospital! How are you doing, by the way? Still thinking of you.

  4. Faces of Loss tries to organize posts by tagging the state in which the mom lives--you might be able to find some more local BLMs by searching the site that way.

    I think it's a lovely thing to do in Lydie's memory. I also think that if you get the help you need, it could definitely be manageable. xo

    1. Thanks Brooke, another good resource!

  5. Me me! I will help in any way I can. You have already done so much for Lydie and the other baby loss parents, it is really amazing.

  6. Hi Heather, I can put you in touch with some people who organize an annual run to raise awareness about climate change and money for solar power. They've hosted one already and have a second planned for the fall. If you're interested in being connected, email

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  8. You should absolutely do it, Heather. I organized a 5K last summer in honor of my aunt Patsy who died from lupus complications. I dubbed it "Run For Your People" -- a way to run/walk for the PEOPLE we love, not necessarily the diseases/illnesses that took them. Each person could run for whomever they wanted, but we did it as a group. We raised about 2K that went to a variety of different organizations/foundations. Honestly, I just put up a donation page, and had people meet up in Central Park at the same place. You can put a lot of effort into doing it really "officially" (with a marked course, permit, etc) or maybe that's something you work up to, next year and the year after that.

    Bottom line is I think you should do it. It was healing for me to funnel some of my grief into doing something productive. And even though the inaugural year wasn't fancy, and only had about 30 participants, we still raised 2K, we had a great time, and honored people lost and loved.

  9. * I should note that we're doing it again this year, and people can run from wherever they are. I'd love it if you (and any family / friends) wanted to run/walk for Lydia in Ohio! You can even be on our "fundraising team" meaning the people could come to the Run For Your People fundraising page, and donate on behalf of your team, and we could put those funds toward Star Legacy Foundation (or wherever you want). No pressure, obviously, but would love to honor Lydie in this year's RFYP!

    1. That's such a great idea, Courtney! Let me know more details - would love to be part of it for Lydie.


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