I can't believe that today marks one year that you have been away from us. I feel a little sick today thinking about how much you are missed....how much I miss you...how much we all miss you.
Although you left behind an emptiness in our hearts, life does go on, and it won't wait for us. Your daddy and I have done our best to be present with your brother, to love him and not let our grief get in the way of that. It has been hard. We wish so much that you were here to grow up with him...to be brothers.
I still find it so hard, so often, not to talk about you. I still bring you up in conversation as "my older son" or "my oldest son". I think you will remain so for a long time. It brings up some uncomfortable moments, then, when people ask where you are...usually strangers...and I have to explain. This could so easily be avoided by not talking about you at all, but how is that possible?
You see, Ben, even though we miss you and are sad, it is impossible not to speak of you. To smile when I tell people what a miracle you were...are... I still find myself wanting to tell people how incredible your life was. How you were not supposed to live, and yet you not only lived (in the biological sense), you LIVED (in the joyful sense). I cannot describe to people who never met you how amazed I still am at your joy, your smile, your life, your determination.
And there are things I will never be able to tell anyone about...things that mothers understand. What it felt like to hold you for the first time. The feeling of your hands on my cheeks when you would pull my face to yours and laugh. The sound of your laughter. The sound of your morning song. The weight of you in my arms. The feeling of holding you that last night...at two am...listening to your breath.
And there are the things that so very very few understand...Living with the knowledge that your child is not yours....people say they know this, but it is different for those parents who get the news your dad and I did. The determination it takes to grit your teeth, overlook all the frustration and fear and forget your emotions when talking to a doctor, a specialist, a nurse, a pharmacist, a teacher. Explaining again and again and again what is "wrong". Explaining again and again and again that there is nothing to be done. The feeling you get when you are comforting someone about YOUR own child's condition...when they look at you with that look that says "how do you live with this?" What it is like to feel the weight of a soul leaving the body.
I know these things.
People who have lost someone say they will never forget...and I can say the same. But it feels silly to say that, knowing as I do that it's not like there is a choice to forget. You are a part of me...like my own skin. I have no choice but to remember. I am relieved that I remember. There are, however, things that slip away...your smell, the feeling of your hair on my fingers. I fear that over time I will forget things I would rather not..like the sound of your laugh or what it was like to hear you sing.
Today and tonight we will light a candle for you, Ben. We will do the same next weekend on your birthday. We light a candle to remember you and remember how much we love you. Today is not a day for me to have to be strong...today I can just feel, and remember, and love you.
We miss you so much, Tiny Man.