Steve’s journey as a father and a volunteer photographer

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Steve Rubin is a Volunteer Photographer for NILMDTS. But he is also a Dad and he is a Dad of loss. He is proud father to Michael who is twin to David who passed away at birth –

Steve shares with us a bit about his sons, his journey with Michael and how he found his way to NILMDTS. And we are so grateful he found his way to us! We wish Steve and all the Daddies out there a peace, healing Father’s Day!

November 27th FB Square 6.18.15 1988 was a  day that would change my life forever and eventually bring me to Now I Lay Me Down to Sleep as a volunteer photographer.  Our family was hit  by a devastating tornado while my wife was 6 months pregnant with twins. Some 3 weeks later my wife started to have problems with the pregnancy and on Christmas Eve morning the twins were born 3 months early.

David and Michael were born,  25 weeks gestation, each weighing 1.5 pounds. David lived for only 6 hours while Michael, crying with all his might, kept fighting.  Michael was transported to a Level 3 NICU and our journey begin.

 Over the next 4 months, Michael struggled in the NICU, was diagnosed with Down’s Syndrome, and conquered a number of significant medical issues that would affect him for the rest of his life. 

Michael is now 26 years old. Though he is non verbal, he understands everything that is said to him. He speaks volumes with his expressions, and lights up a room when he smiles or laughs. His love for his younger sister, now 23, is seen with his large hugs for her, especially when he learned that she’d be moving up north as she started her professional life. He truly understands more than we give him credit and he has a lot to teach us.

As I went through this journey with Michael, I found myself asking, “why did this happen to me?”.  I had to believe that there was a reason, I just didn’t know what it was at that time.  Then it happened. I found the answer to that nagging question.

One day in 2010, I was listening to an NPR story about  Now I Lay Me Down to Sleep. All my life I’ve been a photographer (though not my primary profession). As an advanced amateur I felt that I brought good photography skills to bear, but more importantly, I knew personally what it was like to be on the other side of these kinds of situations. I hoped that this combination of skills and life experiences would be seen as an asset. So I applied and was accepted. 

As part of the team in the Central NC area, I’ve now done 24 sessions since I joined. I’ve had the privilege of helping many families through their grief with the services we provide stay in contact with some families.