When the Doctor Said 'Take Your Baby Home and Love Him'

Some heartaches cut so deep that all the time in the world couldn’t fix them. I am now five years in, and my wounds still can feel just as raw as they were on day one.

In the spring of 2013 my life as I knew it changed, and not just because we welcomed our second child into the world. Looking back now, my motherly instincts knew something was wrong before the hospital staff even brought it to our attention.

I hadn’t the slightest clue on how to care for a child who had aniridia (no colored part of the eyes). I was told to stay off the internet and that the chances of my child having more than his eye condition were very slim. I kept my drapes drawn and wouldn’t let my son near windows or outside without his eyes being protected. I lasted all of 20 days before I entered the World Wide Web.

I was so tired, and becoming depressed from sitting in a house that was always dark. I typed in the search box, “light bulbs for aniridia.”

I quickly learned there is no such thing, and that I should have stayed off of the internet. My mother received my frantic phone call with all the information I had discovered.

The next day, when my son was 3 weeks old, we were given the news that he has WAGR syndrome (Wilms tumorkidney cancer, aniridia — no irises, genital abnormalities, and range of developmental abilities). Less than 450 people in the entire world have this syndrome. I remember sitting in the geneticist’s office the day my heart shattered and a part of me died. The room’s air became thick and I couldn’t hear. I could see mouths moving but after the words “WAGR syndrome,” all was silent until she uttered, “Take your baby home and love him.”

I was stunned.

What do you mean?

Of course I knew to do that, it was everything else I hadn’t the slightest clue about. Our lives have changed drastically. I no longer go to work, we see many specialists, have hundreds of medical appointments, and have even battled cancer with our son. Our lives look nothing how we had imagined or hoped.

Nothing we imagined could have been as beautiful as what he has brought into our lives.

Needless to say, it all started because we took our son home and loved him.

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