Tonight, my heart aches endlessly. I’ve been watching your videos for hours. I can’t seem to get enough of your wide blue eyes, the way that they always watched my face. Your crazy brown hair. Your baby coos. I can’t get enough of how happy you were.
See, so many medical professionals think that your life isn’t worth having. They use terms like “incompatible with life” to describe your condition. And as much as I hate it, in some ways, they are right. If we hadn’t intervened with oxygen and a feeding tube, you would not have survived for 5 months. Some people see trisomy 18 and only see suffering. Little boy, there is so much more to you and all of the trisomy babies than this limited view.
I saw you every single day of your life. I held you every single day, from the moment you were conceived to the day that you died in my arms. I saw the beauty in you, when others would only see the hardship, the “burden” a special needs child could represent. I saw your joy, the love you received, the love you gave.
I look back at the pictures and the videos, and I see a content, loved baby. Yes, you had hard days. But every person on this earth has hard days. You had significantly less hard days than some people, and you had significantly more love and attention than many. What was so “incompatible with life” about that?
What measures a good life? Is it length of time? Is it the “bucket list” – the amazing things that you do?
I think it is the people that love you and the people that you touch. I think it is what you leave behind – the mark you make on the world. And your mark was very big for such a tiny person.
Mommy’s heart will never heal. There will never be a time when I don’t miss you and wonder what you would look like, what you would be doing. You carried a piece of my heart away, and it will never return.
Tonight, I lie in bed, and I remember carrying you safe within me. I remember you rolling, kicking, hiccuping. I remember when you were born. I remember the fear, the uncontrollable shakes, the joy. I’m lying in our bed, and you are not next to me. There isn’t really a way to describe the emptiness I feel when I realize that you will never lie next to me again.
We miss you so desperately. Your big sisters have been so sweet. I was crying quietly tonight, and even Jim didn’t hear me just outside the bedroom. But somehow, your big sister knew. She came into the bedroom with her special blanket from Nana. She climbed into my lap, and she said that she wanted to help me feel better because she knew how sad I was about James. She said that she missed you too.
Little boy, you weren’t a “trisomy baby” and you weren’t “incompatible with life.” You were my beloved son. You will always be my beloved son. I will carry your light on in this world so that other can feel its brilliance, its warmth.
Sometimes people come into your life, and they are only there for a short time. You love them intensely, you feel a connection like no other. But those people aren’t always meant to stay forever. Like stars, they are only here for a time. The heat they emanate and the light can sometimes blind you with its beauty. And then it is gone. But your eyes are still stunned by the light. And your vision forever changed.
Thank you – to all of the people I’ve loved. And thank you, little boy, for opening my heart and letting your love fill it and strengthen me. Thank you for forging me into someone better than I once was.