This is a guest article from Libby Bianchi.
I remember shopping for my black dress at the mall that one humid fall day twelve years ago. Not a sexy strappy one for a cocktail party. No. Rather, one on the opposite side of the spectrum. A solemn dress. A sad dress. For my son’s memorial service.
He had been born two weeks prior, eleven weeks before his due date, and lived only four hours.
His death wasn’t because of his prematurity, as most 29 weekers have a decent shot at surviving and thriving.
Marco was different
We learned of his troubles at his 22 week sonogram. The one where expectant parents usually walk out, ultrasound photos in-hand, happily chattering about the gender they’d just found out the baby was.
We did leave that appointment with photos of our boy. But there was no happy chatter. There was silent fear and faces stained with tears from the news we’d just learned. And appointment cards. So many appointment cards…an amniocentesis, MRI, echocardiogram, more blood work, a genetics consult, and on and on.
Over the subsequent seven weeks of pregnancy, we went to doctor after doctor and had test after test performed. The testing yielded only two certainties – Marco’s chromosomes were normal, and his body wasn’t working right.
Our love for Marco
With each day and each test, our love for our little guy grew. The fear and sadness and anger at what was happening was real and big. But the love overpowered it. It always did.
In the end, when Marco was born, on Oct 6, 2009. His body was indeed very sick due to a rare and unknown genetic disorder. After hours of deliberation, multiple specialists recommended that we remove his body from the machines and medicine keeping him alive.
The hardest decision
I don’t know that a parent is ever prepared to make a decision to withdraw life support from their child, no matter how old. Sometimes I think back to that day and wonder how I got through it. How I was able to speak the words to the doctor that I agree that we should remove care. How I watched them pull the tubes from his body. How his father and I held him as his heart rate and respirations slowed and eventually stopped. And how I handed him over to a stranger once his body was lifeless.
But when I think about it, I was just mothering him, only in a different way than I ever imagined I’d have to. Instead of feeding, changing his diaper, and soothing him while he cried, I saw to it that his short life and subsequent transition to death was peaceful and loving.
And every day since our infant loss, I have continued to mother him.
I mother him by talking about him. By sharing him so that others who suffer such a loss know that they’re not alone on an island. By telling his magnificent sisters, my 10 and 6-year-old wild flower girls, Lucia and Annabelle, that they have the most amazing guardian angel watching over them.
The dreams of mothering Marco how I wished I could…nursing him, wiping scraped knees, teaching him to ride a bike, watching him play soccer with his father, seeing him off to his first day of 6th grade as I would have this fall…they’re all just a whisper in the wind now.
That whisper tells me that it’s ok to still think about those dreams. To hold them in my heart, to send them flying when I can and hold my arms out for them when I need, and to love my little girls who now dance around with me earth-side even harder.
The Marco shaped hole in my heart will be there forever. And I’m ok with that. I have integrated his loss into my life in a way that’s palatable, and dare I say magical. I wish his story was different. But indeed it is not. And while it was a tragic story, it’s a beautiful one. I would much rather have him as I do now than to never have had him at all.
If you would like to add your baby to our Forever Loved Wall, please email us at [email protected]. Also, if you are looking for resources to cope with the loss of a pregnancy, please look at our Pregnancy and Infant Loss Resources.
This is a guest article from Libby Bianchi. Check out Libby here!