There is a picture that hangs on my wall in my living room that is very special to me. It was taken almost three years ago and yet it can still evoke such raw emotion, of both extreme love and of pain. A little baby in an antique bowl on a dresser. His hair is naturally parted on the side, very dapper for such a young age. His features are delicate and small. He has a little folded ear and plump little lips. His eyes are closed and he is sleeping peacefully.
It’s strange but I still remember the little details of that day. It had been a few days since we got the phone call from our doctor confirming that Lucas had Down syndrome. My brother had flown in to spend some time with us and meet Lucas and as a gift he took photos for us. Most of my day was spent trying to nurse Lucas, our nursing sessions were lasting an hour to an hour and a half, it took extreme patience and was exhausting. That day, between nursing sessions, we headed over to my mom’s house and watched a movie and then when Lucas was asleep, we headed to the room in the basement for the photos. Lucas was propped in a bowl of yarn, put on a chair and in a basket all the while snoozing away. During the photo shoot my brother had me hold Lucas’s head in my hands and my husband hold Lucas’s body in his hands. I remember looking at my husband’s arm with his hospital bracelet still on but not able to ask him to remove it. He had told me earlier that week that he wouldn’t take it off until he knew, he was wearing it with intention. For some reason that bracelet held hope for him, that his son would be healthy and typical. But here we were a few days in and that bracelet was still on. The sight of it made me lose my breath and my heart ache. I felt such conflicting emotions just at the site of it, both wanting him to take it off and keep it on forever. I felt guilt for cutting mine off as if that was why my son had Down syndrome. Sometimes grief can make you think crazy things, tangling logic and emotion. The reason I write of this seemingly insignificant moment is that my husband cut that bracelet off this very same day. I’m not sure what provoked it but it was as if with it’s removal came his acceptance of Lucas’s diagnosis. I think with his acceptance he found peace. I can’t even begin to tell you how guilty I felt that it did not come so easily for me. Over the next year, finding my own peace with his diagnosis, would prove to be a tug of war.
I found that if I threw myself into Lucas’s development and researching everything I could about Down syndrome that it made it easier. I started blogging and writing and I started to feel better. Our lives returned to an almost normal but I couldn’t stop thinking about my son and his diagnosis. I thought and talked about him 24/7. I had to get him to the next milestone and be reading about the most up to date therapies for kids with Down syndrome. It was intense and stressful, thinking and feeling this way. Without realization I was labeling myself one dimensionally as “mother of a child with Down syndrome.”
I think what ultimately helped me was my camera, as strange as that may sound. My dad bought me a subscription to Flickr and I just started snapping away. I found so much beauty in my son and I wanted to share it with everyone and photography proved the perfect medium. He was an amazing little subject and I captured his every milestone. This is when my love for my son, my acceptance of his diagnosis and love for a long forgotten hobby intermingled. Photography ignited a passion in me that was just waiting to come out and in a way it helped me heal. Slowly I started to remember that I was a person with more then one attribute, that we were a family, that there was life beyond this obsession of mine. I started to think less about Down syndrome and more about the other details of my life. And I became happier and finally found the peace and acceptance that came so easily for my husband. Now this isn’t to say that I don’t still think about Down syndrome, of course I do and I still want the very best for my son. I am just finding ways to fit it all in equally and in a healthy way.
So if I could talk to the past Erin, I would confirm what she already knew even in the haze of grief. That this little boy was going to change her life forever. That he would capture her heart in a way that only a child can. That she would love him fiercely and protect him fiercely. That on bad days his smile would make everything brighter and his captivating personality would attract people around him where ever we would go. That she will cherish the sweet snuggles and kisses from this little boy whose innocence and kindness emanates from every bone is his body. That he would change the way she looked at the world and at people and ultimately make her a better person. And then I would give her a big hug and tell her to take her time and grieve because you can’t rush grieving, but that there would come a day when she will realize it’s all ok, that it’s so much better then ok.