Now that we are Aware, It is time to Act.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.  – Reinhold Niebuhr


Today is the day after World Prematurity Awareness Day & exactly one week from my angel preemie’s birthday. I am in deep contemplation, I am angry, and I hurt in places that they do not make bandages and Neosporin for. I hurt for the loss of the children that I patiently waited and prayed for. I hurt for the dreams, hopes and future that will never come to fruition.

Serenity— I have learned to live my life to the fullest though I have experienced loss. When I have this discussion with others, most are shocked that I have had a lost. To them, I do not act like a person who has experience loss. This week is a hard week, as I should have been planning my sons 6th birthday party.  We should have been explaining that since his birthday fell after Thanksgiving, instead of on the actual day, that we were going to be free to party it up!  That is not the reality I wake up to so it hurts, but I am ok.  In a couple of hours, I am going to finish shopping for our Thanksgiving dinner and finalize plans to meet with friends this week. Even though I do not attend funerals, I am emotionally at a place where I can go to baby showers and celebrate the family.  I can hold and play with others little ones, change diapers, and give children super cool toys. I enjoyed giving my girlfriends rainbow baby a huge stuffed triceratops & BFF dino necklaces. That put me in competition with the uncle that granted her wish of being a mermaid princess with her very own pink castle tent!

We still try to live below our means. If I want to take a trip and it is in the budget, then I do. At one point I wanted to go back to school, so in 2013 I did. I needed to take classes during the day time, and the company I was with would not negotiate my time so that I could still work full time and finish my degree. So, in 2016 I quit my job and took a part time job doing remote work to finish my degree. Side Note: I took substantiation pay cut, and our family accountant, cringed when he did our taxes earlier this year. I am dreaming big and putting actions to those dreams.  All of that came when I accepted the loss, and chose to live in spite of the loss.

Courage— As a mom who has experienced NICU loss, I have encountered many people who do not want to talk about it in fear of making me feel “uncomfortable”. In reality, I have experienced that it was often done so that they would not feel uncomfortable. Though it hurts dearly and deeply, I have come to accept loss as part of life. For me it is the reality check of cutting away superficial relationships, keeping up with the Jones, or attempting to be “important”.   Losing both of my children in my early 30’s made me aware of how short and precious our time is here on this beautiful planet. It helps me pull close to the people who value me. I removed myself from environments where I am not valued, which freed me up to look for environments where people wanted my contributions and what I bring to the table. I am striving to be significant not important. It has also allowed me to move past my fears and insecurities and try new things (I have a great life partner who supports me, so it makes much of this easier).

What I find very interesting is that the level of uncomfortableness that I am experiencing with the subject of child loss, is similar to when it is time to have the magical discussion surrounding race, inclusion and equity.  Personally, I am comfortable having the hard conversations around race, inclusion, policy, access and equity. I do have an unfair advantage in remaining unoffended when having an open and honest dialogue in these areas. I believe that part of this is because of my childhood experiences, life experiences, and the college major and minor that I choose. I was encouraged to look at the facts, and not simply my interpretation that makes me feel comfortable. I had to research, analyze and establish conclusions around the facts–the good, the bad, and the ugly–and all that we want to keep in the closet.

I am a military brat, as both of my parents are Veterans who served in the U.S. Army. I lived overseas for over a third of my childhood. I have a degree in Sociology with an emphasis on Social Work, with a minor in African and African American History. In the world of Sociology, we study, learn and understand what the effects of one’s environment have on them. In the biosphere of history, it is all about discovering what really happened, what are the effects of what happened and then understanding the ripple effects in society now.  When I look at current events and policy, whether it is the effects on premature births, unarmed black men being shot, or immigration, how I view the world at large is through this unique set of lens.

The wisdom to know the differenceAfrican American women are 48% more likely to have premature births than all of the other ethnicities combined.  The continent of African has 60% of the world’s population of premature births.  Premature birth is a problem across the board for families. However we must take a look at health disparities to understand, and transform the disproportionate rate that they are effecting this population. When do we move beyond awareness and when do we move into action?  I am appalled that the preemie birth rate is as high as it was 6 years ago when I had my son.  I am disgusted that the rate is higher than 3 years ago when I lost my daughter.  There needs to be research conducted, however, there are many areas that we need the “courage to know the difference” of access and equity to nutrition, education, housing, healthcare, socio-economics, unconscious bias, and race.  Yesterday on Prematurity Awareness Day, the FCC scaled back internet subsidies for low income homes.  If these families are not connected to the internet, how can they access their electronic records or telehealth?

I had the privilege taking a class on slavery this year at Clemson University. My professor was a lawyer who held a Juris Doctorate and a PhD in history. During the very last class of the semester we had a discussion pertaining to the transition after the Civil War.  She made a comment that has remained with me when she stated that “life after the civil war and into this modern era as one where we rewrite our memories.”  What she meant was that it is the place where history and memories butt heads.  Essentially, when there is a history that we are uncomfortable with, we choose to remember that account through our perspective.

At times, that may leave us refusing to learn, credit, or accept the facts, figures and even the people that make us uncomfortable. By not acknowledging the facts, this leads to unconscious and conscious bias that effects population health.  These are changes that we can make if we can accept, discuss, collaborate and then implement. Everyone has a seat at the table, so we should leave our hero complexes at home so that we can function as a team. What if we started Preemie Action Month—a month dedicated to the search for solutions by the acknowledgement of the facts? Let’s move forward with the courage to change the future that is within our control.