I started looking for a local support group back in October. No luck. We live in a pretty rural area and there was nothing here. The only thing we have access to is private counseling, but I was really looking for a group we could be a part of and contribute to. I researched the Compassionate Friends, Share, MEND, MISS, all of them. Then, on a random websearch I came across the March of Dimes website. I had no idea what all the March of Dimes did. I had participated in the March for Babies before (when I was pregnant with Ethan was the first time), but I had NO idea the money raised also supported research in all kinds of health issues...including clotting disorders and other issues related to miscarriage, stillbirth and neonatal death.
I looked around their website some more and found that part of their mission is to provide support to bereaved parents. Who knew!? They even sponser "A Walk to Remember" (the steps they'll never take). We might not have a lot here, but I do know the March of Dimes Regional Office in a neighboring county. I sent them an email saying I was interested in learning more about any support groups or services. Then I waited. And waited.
In early December, I got an email! The local office does not currently offer services for bereaved parents, but wanted to start a committee to lead up support efforts and they asked if I would be willinng to be a part. Of course I said yes! I was so excited! We met once in December to brainstorm what we could do to support bereaved parent and parents of babies currently in the NICU. The closest NICU is a little over 2 hours away, so we were trying to think of things to take there to support families du ring their stay. I never experienced that. BUT, I am going to be able to share what I know. Which, sadly, is only death. Among the people that were in attendance, there were two March of Dimes employees, a mother with a lively little girl who was born very premature and is now 4 years old and healthy, there was a mom to twins that were born premature about a year ago and both are now doing great, a mommy to a set of twins who were born at 24 weeks, one survived, one did not, and then there was me...no survivor here. At times I wondered if this was the right place for me, but the more we talked, the more I knew it was. LOTS of great ideas came from this session, but we left not knowing exactly where to start.
We met today for the second time. There were just three of us there, but I still feel like we got a lot accomplished. We are trying to get info out there and start some support services. The March of Dimes employees are busy planning the marches and getting everything ready. If you are familiar at all with the March for Babies, you know that every year the March of Dimes selects an Ambassador to share their story and lead the official March. The Marches that I have attended, there is always a healthy baby or preschooler who has overcome many odds and is a survivor of premature birth.
This year, they are taking a different approach.
They asked me today if we would consider being the Ambassador, in memory of our Shyla. At first, I have to admit, I thought "I bet she doesn't remember my baby died. There is no success story here. There will not be a healthy bouncing baby girl at the march." But as we talked more, it was very clear she remembered my story. I will speak at the kick-off luncheon in a few weeks and share her story. They told me I will need to speak with the press also and gave me a tip sheet on how to do that. Then, in April, at the March for Babies, Ben, Ethan and myself (with Shyla's blankie in hand) will ride in a convertable and lead the march through the downtown area of that neighboring town where the regional office is located. This will not only be a March for Babies, but a Walk to Remember our girl.
I am honored.
She is honored.
Pray that God is honored in all of my words and actions.