Paula Joana: On Gratitude, Losing a Child, and Making a Difference

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IMAGE: Paula and Phil Joana with daughter Sabina and son Rocco. All images courtesy of Paula Joana.

Editor’s Note: Paula Joana is the mother of Sabina Rose, who died in New Jersey in December, 2013, awaiting access to medical cannabis.

Weed on My Mind by Paula Joana

I want to take a moment to thank some people.

I want to thank the growers, the oil makers, the bud tenders.  The exhausted parents, the worried grandparents, the aunt Gigi’s.  The Polacks, the Guineas, and the rest of my family.  The people who cared for my son when Phil and I were grief stricken.  My high school class, who proves to be the best, over and over.  My friends who have babies the same age as Rocco so he grows up with tons of best friends.  The Jims, Lefty, The Wilsons, Rowyn, the “Mom Mob,” and the Tri-state area.  The LNF and The Great Jessica, PhD.  My coworkers who don’t ask me why I am crying at my desk.  The kids with huge teams, the brave ones, the ones who left us way too soon.  The cannamoms and dads.  The people with 2 first names that love us from a far.  My loves in the Rocky Mountains and everywhere else.

I want to thank all the kids who keep fighting.

SabinaI want to thank my sweet Sabina Rose.  You changed my life.  No one has ever nor will ever have an impact on me like you have.  I miss you terribly every day.

I want to thank Rocco who keeps Phil and me grateful for life.

Never in my life have I seen so much weed, talked about weed, smelled weed.  Never.  Never did I think I would advocate for common sense laws.  Never in my life did I think I would lose my baby girl.

My life has been pretty typical:  graduate High school, go to rehab, get a job, and never have money.   Date the wrong man over and over.   Just try to get by.  Then that one day I met Phil.  Then he moved in; now we are married with 2 kids. 

When Sabina started having seizures, I kept telling my mom that if anything ever happened to her, I wouldn’t be able to function.  When my worst fear came true I realized that my daughter was a fighter, and it was hard to keep her down.  I knew that I couldn’t give up.

I think people are amazed that when I am in public I have makeup on and I have clean clothes on.  Sometimes I am amazed too.  Most days I look homeless.  I have a job to do.  Although I am new at this and this job that I have taken on is huge, I can do it.  I ask a lot of questions.  I will not stop fighting this fight until I am sitting in a chair in Washington DC about to testify.

I will not stop because no Mother should feel the way I do.

I will never stop because I hear my husband cry for his girl and it’s not fair.

I will never stop fighting for what’s right because my son will never say “my sister passed and my mom never got out of bed again.”

When I do stop is when I will be in heaven with Sabina Rose.

I’ll tell you this: put me in a cardigan and some Mom jeans and I look damn good.  I speak well and I have great teachers.  I have an army behind me,  an army who grieves with me.  I have an army who cries with me.  I have proof readers, hat makers, and long distance runners who fight with me.  I have people who pulled themselves from the deep hole of addiction as I did, who now advocate for Medical Marijuana.  I have people who have cleaned my house, done my laundry, and brought us food.  I have an army of angry people who see Phil and I slowly pick up the pieces of our broken hearts and keep moving.  I have people who bust balls professionally to make us laugh.  I have people who will chain smoke with me when I can’t shake that feeling.

I have an army of broken hearted people who loved Sabina endlessly.

That feeling:  that feeling that I will never see my daughter walk.  I will never give her piggy tails.  I will never see her write her name.  That beautiful name.   I cry as I type this because I wish I never lost her.  I wish I tried harder, I wish I did more.  The deep level of grieving that fuels my fight never leaves me.

Why is it up to the government what we put into our bodies? I’ll never understand why a woman who battles depression is a bad mom for medicating with marijuana but a good mom for taking Valium or Xanax.  Why is it ok for people to get shitfaced drunk but not stoned?  Why is it ok for children to be pumped full of toxic medication?  Just because I don’t smoke doesn’t mean you shouldn’t be allowed to.  That’s my choice, but I should have the choice.

Sabina2I’ll end with this: I recently saw a picture of Governor Christie with his daughter.  She is a beautiful girl.  My husband will never have a picture like that with Sabina.  When you get tired and don’t want to send another email or make another phone call, think about that.  When you feel worn out and think you won’t get anywhere, think about that.  Right now it’s a hard battle, but we are winning.  I believe it.  Keep going.  Do it for the kids.

I want to thank you for reading this.  I am not by any means a professional writer, but I have a passion and drive.  That’s all you need to make a difference.