I don't even know where to begin. I'm sitting here crying as I try to find the words to write this because I am hurting in ways I didn't even know a human being could hurt. I am 8 weeks postpartum.
I just want my baby.
I want my little boy back.
His name is Mariel Lucio Rae, and he was my entire world long before I ever got to hold him in my arms.
My sweet little dancer. My beautiful baby boy.
I remember feeling him move inside me. I remember playing music and feeling him dance along, especially to Bad Bunny. I remember laughing at his little movements, talking to him, imagining his personality, and wondering what kind of little boy he would become.
He was so full of life.
He had a personality. He had favorite sounds. He knew my voice. He knew my heartbeat. He knew me.
And I knew him.
My pregnancy was incredibly complicated. We learned early on that Mariel had Down syndrome, a cystic hygroma, and hydrops. We were told his chances of survival were incredibly low.
But I fought.
God, I fought so hard for that little boy.
I went through appointment after appointment, ultrasound after ultrasound, and procedure after procedure. I developed severe polyhydramnios and underwent three amnioreductions because I was willing to do absolutely anything to keep my son safe.
I was terrified every single day, but I kept going.
Because every time I felt him kick, every time I saw him moving on an ultrasound, every time he danced inside my belly, I had hope.
Hope that somehow we would beat the odds.
Hope that one day I would bring him home.
Hope that all the pain and fear would be worth it when I finally got to hear him cry.
At 34 weeks, my beautiful Mariel was born weighing 4 pounds, 10 ounces.
And instead of the beginning of our lives together, it became the beginning of our goodbye.
My baby had otocephaly and severe abnormalities involving his airway and esophagus. He had no esophagus and no viable airway. The medical team tried to intubate him, but they couldn't. Even a tracheostomy wasn't possible.
There was nothing they could do to save him.
My baby died after just 19 minutes.
Nineteen minutes.
I carried him for months. I loved him through every terrifying diagnosis. I fought for him through every procedure.
And the world gave me nineteen minutes.
How is that fair?
How am I supposed to accept that?
How am I supposed to understand that I grew an entire human being inside my body, felt him dancing beneath my ribs, learned his little routines, and then had to watch him die?
I was supposed to protect him.
I know, logically, that I did everything I possibly could. I know his conditions were beyond anyone's control.
But there is a part of me that will always wonder whether there was something else I could have done.
One more appointment. One more procedure. One more doctor. One more chance.
After Mariel passed, I was blessed with 29 hours with him in a cuddle cot.
Twenty-nine hours.
I held him. I looked at him. I memorized him.
His little face. His tiny hands. His beautiful features.
I wanted to memorize every single inch of him because I knew those memories would have to last me the rest of my life.
And then I had to leave.
I had to leave my baby behind.
I cannot begin to explain what that does to a mother.
To walk out of a hospital without the child you walked in carrying.
To have your body recovering from childbirth while your arms are painfully empty.
To know that the world is continuing as if nothing happened when your entire world has just ended.
And now I'm here.
Trying to figure out how to live a life that was supposed to have him in it.
People have been so kind. I've received care packages, thoughtful gifts, and beautiful memorial items. I'm even having a custom weighted bear made from his crocheted belongings, with his ashes and hair inside, weighing exactly what he weighed when he was born.
Four pounds, ten ounces.
I want something I can hold against my chest. Something I can cuddle at night. Something that might make my arms feel just a little less empty.
But the truth is, no matter how many custom bears I have made, how many care packages I receive, how many memorial items I collect, or how many beautiful things people do to honor him, nothing is enough to dull this pain.
And I feel awful even saying that because I am so incredibly grateful for every act of kindness.
But none of it is him.
The bear won't breathe.
It won't grow.
It won't look up at me.
It won't reach for me when it needs its mommy.
It won't dance when I play his favorite songs.
And I think that's what destroys me the most.
I don't want another gift.
I want my son.
I want to feel his little feet kicking inside me again.
I want to complain about him keeping me awake at night.
I want another ultrasound where I get to see him wiggling around.
I want to hear his heartbeat.
I want to hold him while he's warm and breathing.
I want to change his diapers. I want sleepless nights. I want the crying, the messes, the exhaustion, the ordinary struggles of motherhood that I would give absolutely anything to experience with him.
I want to watch his siblings love him.
I want to celebrate his first birthday.
I want to watch him grow.
I want all the moments that were stolen from us.
And I can't have any of them.
Sometimes I find myself listening to the music I used to play for him, almost expecting to feel him move again.
But there's nothing.
No little kicks.
No dancing.
Just silence.
God, I miss my little dancer.
I miss someone I barely got to hold but knew more intimately than anyone else in this world.
I miss the little boy who lived beneath my heart.
And I don't know what to do with all this love that still exists when the person I want to give it to is gone.
I want to be clear that I am under the care of a doctor and a therapist. I am receiving professional support and doing what I can to take care of myself through this grief.
But professional help doesn't erase the fact that my baby is dead.
Therapy cannot bring him back.
Medication cannot give me another minute with him.
There is no treatment that can make my arms stop longing for the child they were supposed to hold.
I am trying. I really am.
I'm trying to get through the days. I'm trying to be present. I'm trying to find moments where I can breathe without feeling like my chest is being crushed.
But sometimes the grief is so overwhelming that all I can do is cry.
And I don't want to be told that he's in a better place.
I don't want to hear that everything happens for a reason.
I don't want someone to tell me that at least I got to meet him.
Because I was supposed to get a lifetime.
I was supposed to be his mommy here, too.
I know I will always be his mother. I know that death cannot take that away from me.
But I wanted to raise him.
I wanted to know who he would become.
I wanted to hear him call me Mommy.
I wanted to see the world through his eyes.
And instead, I'm learning how to be the mother of a child I have to love from a distance I never agreed to.
I'm sharing this because I desperately need to be somewhere that I don't have to pretend to be strong.
Somewhere I can say that I'm not okay without feeling like I need to immediately reassure everyone that I will be.
Somewhere people understand that I can be grateful for the time I had with my baby and still be absolutely devastated that it was all I got.
I don't need anyone to fix this.
I don't think it can be fixed.
I just need people who understand.
People who won't be uncomfortable when I say his name.
People who won't expect me to move on.
People who understand that grief isn't a lack of gratitude, and that no amount of love, gifts, support, or counseling can replace the child you buried.
My son was not just a pregnancy. He was not just a diagnosis. He was not just nineteen minutes.
He was Mariel.
He was my beautiful, stubborn, dancing little boy.
He was loved every second of his existence.
And he is still loved now.
I just wish loving him this much could somehow bring him back.
If you're a parent who has lost a baby, how do you carry this? How do you wake up every morning knowing that the person you would give your life for is never coming home?
Because right now, I don't know how to make peace with a world that keeps turning without my little boy in it.
Mariel Lucio Rae
My son.
My little dancer.
My forever baby.
Nineteen minutes of life. A lifetime of love. And a mommy who would give anything for just one more dance. 💙🪽
