SHINE interview

A week of silence on the blog front. I'm starting to realize that I'm needing varied spaces and ways of processing, and see myself moving away from utilizing this "online tool" as much in the future. We'll see. One of the things I've found myself pondering this week is our life's journey moving from being relatively private (other than with close family and friends) to relatively public (starting with my pregnancy complications and throughout Nora's life and immediately after her death). Now it seems like the time has come to figure out where on the spectrum of private to public we feel most comfortable lodging ourselves at this juncture in life.

I don't have many exciting pictures of this week, except about 50 of Phoebe who spent Monday evening with us. I spent much of the evening determined to capture the cuteness of her wrinkled nose when she would scrunch it up and sniff at us just as I did when I was a baby. ADORABLE. And I succeeded!! She has brought and continues to bring a lot of joy, laughter and energy to our household and she seems to think we are fun to hang out with too, which is flattering. Her whole body moves with excitement when Kali enters the room!

Today I'm savoring a much needed day at home. The house has a lot less dust, cobwebs, and dirt in it. And I got some much needed exercise. This afternoon I had a two hour interview about Nora.

SHINE stands for Skyline High-risk Infant Needs Evaluation and is a program that looks for reasons why babies die or are born too early. They are hoping that by learning reasons for prematurity and infant death they can better provide care for pregnant women and their unborn children. While voluntary to participate, I chose to. The interview was done here in our home by a very kind and considerate woman from the local health department.

Mostly I find that I'm looking for opportunities to talk about Nora and if this would be helpful for future families it seemed worth participating. However, the questions in the interview made me realize once again how unique Nora's life was. Much of what was asked really didn't relate - I had great prenatal care, I'm not experiencing violence in my home, we are not under the pressure of living from paycheck to paycheck and unable to cover medical expenses, our baby wasn't exposed to second hand smoke, alcohol or drugs, and we had good education about infant care. Many of the questions made me sad because I figure they don't make it into this kind of interview process if there aren't at least some persons that would answer the questions very differently.

It doesn't take away my sadness about losing our baby. It doesn't make Nora's death less tragic. It doesn't minimize our grief or change the roller coaster ride of emotions we find ourselves on. But it does make me feel so grateful for a stable marriage, good health insurance, a healthy energetic fun 5 year old, having our basic needs met in abundance and our gorgeous view which the interviewer commented on multiple times...

The interview did give me an opportunity to mention the difference that palliative care ("comfort care") made for us in Nora's final days and in our processing of her death. And it also gave me a chance to give a recommendation that they include dads in their program!!

Tomorrow will be a big day for all of us. We head back to UVA for the first time since Nora's death for a Memorial Service planned by the Children's Hospital for family members who have lost children that we cared for on 7th floor. Kali has chosen the orange outfit to bring along and we'll bring with us her memory box to include on tables of mementos that will be present there.

We are grateful for a way to reconnect with a community that shared some of our most intense life moments with us. And I'm grateful we can be there together as her family. I still feel so proud of her!