I can’t speak for anyone else but I think many other bereaved parents can identify with me when I say that right after our son passed away that I felt completely empty, hurt, angry, sad, confused, bewildered, terrified, numb, shocked, helpless, upset, pissed off, mad and a whole lot of other emotions. I felt hopeless….I was completely hopeless. The night our son died, the sky was peaceful, the weather was warm and I….was hopeless. 

Even while we were in the hospital we knew that we wanted our son’s life to have some great purpose. We knew that I would donate all of my breast milk to other babies in NICUs across the country. Since our son was born with congenital anomalies (birth defects) he couldn’t be an organ donor to another person so we decided that we would donate his organs to medical research. We consented for doctors, researchers and medical students to use his medical records to be used for additional research papers and journals. We set up a way for people to donate to the hospital in his honor. But I knew that God probably had more in store for us to do in terms of allowing our son’s purpose to really come alive.

Almost six months to the day that our was born I was invited to a meeting where funding was at stake to be given to a variety of organizations from all over the state of Ohio to help reduce infant mortality. The Director of Ohio’s medicaid program led the meeting and other government officials, CEOs of companies, community health workers, leaders of health departments and program directors were in the room. And of the 75 attendees, to my knowledge I was the only parent who had lost a child who had been invited to participate in the meeting-to give a parent’s perspective. While in the meeting, I brought up the need for parents and their needs to be considered as the legislators made their decisions about where to give the money. After the meeting people approached me and told me they appreciated my comments. That day was the day when I realized that I really could make a difference in the fight against infant mortality. 

Over the next several months, I got more involved in the work that Cradle Cincinnati is doing to reduce infant mortality. In May, a local government relations vice president invited me to the State House to learn more about the government advocacy program that medical students can go through during their residency and fellowship programs at Cincinnati Children’s. On that trip, I learned how much of an issue infant mortality was in the state of Ohio and I heard first hand that legislators in the state knew that something needed to be done about the problem. That day, I took a picture on the steps of the statehouse and vowed that I would be back to make a difference for my state. On that day, I wasn’t quite sure how that would happen but I knew that if I had anything to do with it-that I would be back to help influence change in any way possible.

 

In August, 13 months after our son passed away, my opportunity came. I’d learned that two senators–one a Republican and one a Democrat had decided to work together to create a bill that would help address several factors that can play a role in infant mortality. As a part of the bill being passed or rejected, people from the public could testify in support or opposition of it. The executive director of Cradle Cincinnati was planning on testifying in support of the bill in front of the Ohio Health and Human Services Committee and I asked if I could go too. I knew that executive directors talking about the bill could have some positive impact but I knew that a bereaved parent testifying on behalf of the bill would have an even bigger impact. 

On the day that we went to Columbus I wasn’t nervous–I was passionate about how other lives could be impacted by the passage of the bill. While infant mortality is a big issue across the state–it is an even bigger issue for African American families–with those families (like mine) experiencing infant mortality at a rate of 2.5 times higher than Caucasians. If the legislators ever wanted to hear from someone who knew what it felt like to lose a child, they were about to hear from me. 

After giving my testimony, you could hear a pin drop in the room, where there was standing room only. One senator had tears in her eyes and the others had a look of reflection on their face. In that moment, I didn’t feel hopeless. I felt like I was making a difference. I may have been a bereaved mommy but I was a strong one who knew that her, her husband’s and her son’s lives had been designed and purposed for that moment. The moment when other lives could be positively impacted. 

A couple of the senators asked me questions while one shared a friendly comment and told me “thank you.” I returned to my seat and touched my necklace with my son’s picture on it. We had done it. 

The next day I learned that the senate bill passed 29-1. That meant that it had made it through its first mark while on the trip to being passed into Ohio law. If and when all goes well and when the governor signs it into law, the bill (turned law) will call for improvements in how data will be collected and shared, proven interventions will be built upon and implemented, there will be health system improvements and social determinants of health (such as access to care and transportation and safe and affordable housing and jobs that provide stable income) will be addressed and fixed. 

Testifying in front of the senators has been one of the most tangible experiences that I’ve ever had where I felt like I was making a difference for so many people. I say ALL of this to say-that as a bereaved parent–never underestimate your ability or your power to impact change.

Maybe speaking out loud about your experience isn’t something that you’re comfortable doing. But writing an editorial for your local newspaper in honor of Pregnancy and Infant Loss Awareness month (October) is something that you can do. Or maybe joining a local support group where you can get help from others and at the same time you can provide words of encouragement to other bereaved families can be your way of making a difference. Or maybe volunteering with an organization that helps other families who are dealing with infant mortality would give you hope. Or maybe, for today, you making a difference looks like you speaking your child’s name quietly to yourself or to a loved one. And by doing so, it’s your way of making sure that your child’s memory stays alive and your way of acknowledging that that perfect little person was your contribution to the world.

I know what feeling hopeless and helpless feels like. But if you can hold on and lean in to what you still have–your voice, your heart, your passion, the love for your child and so much more….you can make a difference.

Here’s a story about the bill that I testified in support of: http://ohiosenate.gov/jones/press/jones-announces-legislation-to-implement-recommendations-of-the-commission-on-infant-mortality 

 

One evening I had my hand placed on my boy’s chest when an occupational therapist came into his hospital room. She said to me, “Do you want to know how to love your child?” Excited, I replied, “Yes!” My only concern for my son was that he didn’t suffer and that he felt loved while he was here on earth. The therapist led my hand to his right foot. She then cupped his foot gently and told me that he was always pricked and prodded in his right foot. It was the hurt place. So I replaced her hand and I gently cupped his right foot. She explained to me that my boy needed his foot caressed to know that every touch isn’t to cause pain. Taking a lesson from that event made me think about how all of us treat each other. How many times do we touch each other’s hurt places, which end up causing pain? Many relationships could be mended if we touched each other’s hurt places in a soft way in an effort to give love. A lot of times if your hurt place is touched incorrectly you tend to  to touch and hurt other people’s hurt places-even when you don’t do it intentionally. My son taught me how to be gentle when it comes to people’s hurt places and how to show them love. 

-Written by: Chris Jones