After our son passed away, I remember looking at myself in the mirror one day, speaking out loud and saying, “All I wanted was for our son to live.” And then I let out a long, deep sigh.  And when the tears started to well up in my eyes, a still, quiet voice responded to me and said, “Look at how he’s helping other people…through the milk he made, through the way his story is blessing other people, through the donations that people are giving in his memory. He’s still alive.” I looked back in the mirror, nodded and slightly smiled.

Walking the journey of infant and child death is never easy. And as a parent I’ve learned that no matter what-I’m always going to want my child in the flesh. Here on earth with me. In his room. In his bed. And in my arms. But since he lives in Heaven, which is a better place for him that this earth would ever would’ve been, I’ve come to find comfort in the other ways that he lives.

When we realized that our little guy’s short life was coming to an end, we knew that we wanted it to have meant something. We needed our pregnancy experience and his life to have not been in vain. So, we immediately started thinking of ways that we could turn the most negative situation in our lives into something positive for others. The first thing we thought of was to donate his organs to our local LifeCenter organ donor network. Our son was born at 36 weeks and 2 days, which is just about full-term, but since he didn’t make it to 37 weeks in utero, he was still considered premature. Plus, with all of the congenital abnormalities, we were told we wouldn’t be able to donate his organs to other living people who needed them. But, we knew that if we donated his organs to research that countless people would be helped for years to come through the work that scientists would do on them. They would be able to discover why his body and organs grew the way that they did and they would be able to track their findings and turn that infomation into articles, which would be published in medical journals and ultimately, help teach doctors and medical students all around the world about babies who were born with some of the same issues.

We’d spent approximately 12 hours a day at the medical center every day with our son. And when it was time for us to go home to get rest we were OK with doing so because we could login to a system and watch our little guy on a camera called the “NICVIEW.” The NICVIEW camera made it so that parents and loved ones can get online at any time of the day or night and watch their child. The NICVIEW cameras gave us an opportunity to go home and get some rest and if  I wanted to sneak a peak of our little boy in the middle of the night I could do it virtually. During all of that time in the NICU we also saw that there was a lot that went into making sure that place ran smoothly! Between the nurses, doctors, support staff, all of the medical equipment and child life equipment and everything else–it was a top-notch operation! We also saw families who appreciated being able to step away for a few minutes to get some food from the large cafeteria downstairs or being able to leave the hospital and visit one of the many restaurants near the hospital. We decided to set up a way for people to donate money back into the NICU in Junior’s honor. The money that was donated would be used to help fund all of the items mentioned above plus whatever else was needed in the NICU that would help families during their time there.

 

I’d learned about milk donation through my years of working at the hospital and decided that if my baby wasn’t going to get my milk some baby should. Heck, that stuff was liquid gold. And I was producing a lot of it…every day and all day. So we donated all of my milk to the Mother’s Milk Bank of Ohio, which serves seven different NICUs across three different states. My little guy never got any of it–but some other blessed babies got the nutritious and delicious milk that came as a result of me being pregnant with Junior!

 

We started the Angel Baby Network to help bring parents like us together. And we got involved in the work of Cradle Cincinnati, a group dedicated to reducing infant mortality in Hamilton County. We also spoke with people from the Fetal Infant Mortality Reduction program to tell them about ways that the local hospitals can be more sensitive to parents’ needs when they loose their infants.

Don’t fall into the belief system that because your child’s life ended that his or her memory can’t be kept alive. There are so many ways that your little one’s life can still touch others and no matter what–he or she had a great purpose. Just like any other parent or loving family member who is in a child’s life, it’s up to you to develop and cultivate that purpose.

Here are some ways to keep your little person’s life “alive.” (The examples that I gave above are in the list below with some other suggestions.)

-Start an organization that will help others. Figure out what your mission and vision are and go forth with it.

-Donate his or her organs to the local organ donation center. Or donate his or her organs to research.

-If possible, consent to have him or her in medical studies. Those studies could help other families in the future.

-Donate your milk to your local or regional milk bank. *Don’t sell your milk online. This is a very dangerous practice. Certified milk banks pasturize your milk and make it safe for other babies to drink.

-Set up a fund for loved ones to donate to a cause that is special to you or an organization that helped your family when your child passed away.

-Do random acts of kindness in honor of your child.

-Plant a tree in his or her honor.

-Get a tattoo or a piece of remembrance jewelry in his or her honor.

-Donate some of his or her items to an organization or another family who you know could use them.

-Blog about your experience online or submit an editorial to a magazine or newspaper. Or write your story in a chapter of a book. You never know who is reading your story and who will be encouraged by it.

-Buy toys or gifts for an orphanage or another agency and donate them in honor of your child.

-Donate money to a funeral home and ask that it only be given to families who lose their babies or children. *Trust me–having to come up with money to cremate bury a child is the last thing any parent wants to think about after their child has passed away.

-Fundraise for a room or a space or a piece of equipment at a location that is special to you and your family in honor of your child.

-If your child passes away from a specific illness, participate in an event in honor of your child that raises awareness about that illness.

-Participate in a support group or activity and share your story.

–Speak your child’s name.  He or she made you a parent and no one can ever take that from you.

By: Danielle Jones