Babies are not supposed to die. End of story.
Ever since that dreadful, beautiful day where I held and lost my son, I felt a strong need to keep his memory alive. This was not an easy task.
It was easier at first. People sent beautiful sympathy cards, flowers. Being part of a support group and speaking with other parents helped, but after having Nicky and all that his tough life entailed living with EB, it became rare. Nobody would EVER say his name nor bring him up in conversation, it was all very uncomfortable and weary. Such an unspeakable loss, unspeakable because nobody wanted to speak about it. Which is what prompted me to break the silence. That is why I wrote his story.
Even before Nicky was born, there were times where I felt my strength was tested over and over again. Free baby photos, free baby coupons, free baby magazines would continue to flow. The baby section at the store would bring tears to my eyes, pregnant women were around every corner. How exactly do you handle this constant reminder?
Then there is the dreaded gigantic hospital bill we had to pay for a baby we had to bury. I can still see, as if it was yesterday, the baby caskets we needed to choose from, the cemetery plot, the funeral director staring at me with that sad look in his eyes. That feeling of complete failure. No, this was not yesterday, this was nearly 18 years ago.
I had someone ask me if my book, Losing Alex, was going to be 'closure' for me. No, there is no closure. There will never be closure. It's a pain I had to learn to live with, which is now part of me, part of the "new" me. Pain changes people, it really does.
Do I cry about Alex every day? No-truthfully, I rarely cry about him anymore, only perhaps on his birthday or if something triggers a painful memory.
Do I think about Alex every day? Surprisingly, I don't. He's part of me though, true enough. If these nearly 18 years have taught me anything is to put things into perspective, to appreciate every moment, to love more, to live life with an exclamation point, and, believe me, that is hard to do when I see Nicky in pain every single day. But, we make do. We work with what we've got.
“The world loves closure, loves a thing that can, as they say, be gotten through. This is why it comes as a great surprise to find that loss is forever, that (two) decades after the event there are those occasions when something in you cries out at the continual presence of an absence.” Anna Quindlen
I wonder sometimes if God didn't put a little 'extra' sprinkle of love in Nicky, everyone always comments what a sweet child he is, how loving and calm he is despite it all. I also wonder if God didn't put a little 'extra' sprinkle of joy in Connor, he's always happy, always helping. I wonder if either of them know how much we need the light they bring into our lives. Truthfully, I cherish the ground they walk on.
Other people, upon the release of my book, compared their pain to my pain. "You're lucky", they said:"Other mothers never held their angels". Let me just preface this by saying that the word 'luck' with "holding your dead newborn" should never be in the same sentence. I am very grateful I was able to hold my baby, and I state that profusely in my book. Mothers in the past were 'shielded' (their words, not mine) from seeing their baby, thinking they could 'forget' faster if they didn't see their baby. Nothing, of course, is farther from the truth. But a loss is a loss. Does this mean is better to lose a child at birth or when he's 1, 5 or 15? There is no loss better than another. None are acceptable. Each one is different, but all the same. Children are not supposed to die. They are our future. We will always mourn what could have been.
Life is far from perfect for many families. 100 babies are stillborn every day in the United States. Mothers need to know they are not alone. They are not going crazy. Their babies matter. Nobody should tell them HOW to grieve or HOW LONG to grieve for. The future is going to be different than they envision, and it's OK. Even though a piece of their heart has been torn, it will be re-threaded with love. That scar will always be there to remind them of the love they lost and that is not a bad thing.
Grief, in the end, is the price we pay for love.