The Heart of Soul

I think a lot about Alex this time of year. I don’t know if it’s the changing of the season or the fact that I was pregnant and in my last trimester with him (nearly seven years ago now) feeling huge but happy about his impending arrival. Perhaps it is nostalgia I feel as I look at the holiday cards and family photos that start arriving in our mailbox shortly after Thanksgiving knowing that when I gather our family together to take our holiday card photo there always seems to be a space in the picture that is vacant where Alex should be.

It’s a story much too long to be fully told here in this blog post, but our son was born into the world the same day he left it, January 19th, 2005. The agony of this fact has mellowed with time, but the longing for all that we lost will never really leave my soul. We were extremely fortunate at his birth to hold him, snuggle him and tell him how much we loved him and that we would see him again someday. If I close my eyes and really put myself back to that moment, I can feel the weight of his perfect, cozy body in my arms. Although we didn’t have much time to prepare for the fact that we would have to say goodbye to our baby boy the same moment we were saying hello, we did have a few days to come to terms with this fact and brace ourselves for the moment.

The moment came, and when our nurse suggested we allow her to snap a few photographs of Alex, I remember responding to her with barely more than a nod. The emotional magnitude of the journey we had been on in the few days leading up to Alex’s birth did not leave room to consider anything beyond that moment in time — holding him, imprinting his face in my mind, touching his soft and smooth perfect skin and absorbing every ounce of Alex’s essence for both the first and the last time.

He looked much like his older brother and yet he was himself. I wasn’t prepared to have to let him go but there was an amazing sense that Alex was on his own unique journey and we were very honored to bear witness. The nurses were so kind. We could hold him as much as possible. We could keep him in our presence as long as we needed to say our goodbyes. We could have family and friends and our firstborn son see him and hold him and say their goodbyes. We did all of this. We kept him with us in that hospital room for a long time but I still wasn’t prepared to let him go. The finality of that was too much. I remember the panicky feeling as I handed Alex over to the nurse for the last time. It was time. I told her I was ready, but the reality that I would not get to see my son again was devastating. I asked my husband to grab our camera and take one picture of myself with Alex just before we let him go forever.

That picture was the single most illuminating thread that led me out of the difficult and deep tunnel of Loss. It truly saved me. It was never far from reach and in the first few days I carried that photo with me everywhere I went. The other photos our nurse so thoughtfully suggested taking were crucial to my healing as well. Eight grainy pictures of Alex taken with a point and shoot camera. These photos mean everything in the world to me. They allow me to breathe deeply and continue on in my life. I don’t have to hold every detail of Alex in my mind’s eye so as not to forget his face. I can look at my photos and see him at anytime. These photographs are a reminder that he WAS here, and having them makes me calm. Over time, I was able to look back on our journey with some perspective. I realized that I needed to give others the beautiful gift of photographs when they were experiencing the loss of a loved one so that their journey through loss and grief could be eased just as mine had. And this brings me to the heart of this post. I want you all to know about and, more importantly, share with your family and friends the astoundingly important non-profit highlighted here earlier this month: Soulumination. Founded by Lynette Huffman Johnson, Soulumination celebrates the lives of children and parents facing life-threatening conditions by providing professional photographs, free of charge, of these special individuals and their families. I was not lucky enough to have Soulumination record beautiful photographs of Alex, but I am now lucky enough to be part of Soulumination as a volunteer photographer and board member. Having decided to start my own photography business after losing Alex, I am so grateful to Lynette for inviting me to share in this important work. The sense of peace these photographs bring to families during the difficult time of loss and grief is immeasurable. I have seen the impact from both sides. I am grateful beyond words that Lynette had the insight and the courage to bring Soulumination into existence. I am hoping that hearing my story presses each of you to have the insight and the courage to lead a person to Soulumination. It can be uncomfortable — encouraging someone to have photos taken when they are losing a child or a parent is dying is not easy. It is enormously important. Think of the impact. Thank you for spreading the word. Enjoy your family and friends around the holidays and be sure to let them know about Soulumination.