I did not know at that time that 6 months later I would face breast cancer, I did not know how challenging it would become to juggle working, building a new non-profit and managing breast cancer all at the same time.  During the first few months of my diagnosis I took a step back and thankfully Community Navigators was in a good place for me to take a step back for the time being.  Goes to show you that even when you think your healthy and have all the time in the world to make your dreams come true; you never really know what the future will bring so YOLO! (You only live once)
​Before breast cancer decided to impact my life, I worked a lot but I didn’t mind.  I personally have known I wanted to help people with disabilities since I was a young girl.  Unlike my friends in college who did not know what they wanted to do when they grew up, I knew what the track was for me.
​
I attended Southern Connecticut State University to study Therapeutic Recreation with a focus on disability studies.  Including people with disabilities within their communities was always something very important to me.  After gaining experience in different aspects in the field I knew for me to be truly happy I would probably need to break off and start my own agency to help individuals with disabilities and their families.  In 2014, my boss passed away to cancer and I knew it was time to jump and take a risk.  By 2015, I gave my notice and announced the beginning of Community Navigators, a non-profit driven to help create inclusive opportunities in individuals own communities. 

Want to know more about the type of work I do? Feel free to check out CNI's website!

Don't forget to LIKE my new Facebook page! 

“Girl meets boy. Girl and boy fall in love.  Boy gets sick. Boy dies.  Girl is sad.”  “Boy meets girl. Boy and girl fall in love. Girl gets sick. Girl dies.  Boy is sad.”  We used to laugh when Larissa emerged from her room in tears after finishing yet another formulaic teen romance by Lurlene McDaniel.   But one day this past year, it hit me how totally unfunny the scenario was.  Because my daughter was living the story line. 
​
She had met Martin, my wonderful son-in-law in sixth grade.  It wasn’t until they both grew up that they found the fairy tale love most moms dream their daughters will find but fall in a fairy tale love they did. And I had the privilege of starting to plan their fairy tale wedding, trying on bridal gowns until my talented, lovely, brilliant daughter finally settled on one that made her look like a fairy tale princess, complete with a handmade veil and tiara. We found a castle for the venue (okay, she and Martin chose the more modern side and planned on a boating entrance instead of a horse and carriage) but it was still part of the St. Clemens castle property.  We tasted wedding cakes fit for a royal family. We bonded over icky stationery and talking about silly traditions that they would or would not follow and the thousands of details mothers and daughters sweat when a wedding is 10 months away.

And then, less than three months after Larissa and Martin got engaged and set their date, girl got sick.  Really.  Really really sick.  My beautiful daughter was diagnosed with breast cancer.
The next few months were a blur – confirmed diagnosis, double mastectomy, the appearance of her biological family I’d always prayed we’d meet in wonderfully happy fairy tale circumstances, upgrading her cancer to Stage II because of some tiny lymph node involvement, and three weeks later finding out that she had Stage IV breast cancer because it had aggressively metastacized to her bones and liver.  Larissa was not just terrified from the lump she’d found that everyone tried to convince her was probably just a cyst.  She went from having her whole life spread out years in front of her to a high statistical probability of the fourth stage not just of cancer but of McDaniel’s plot line.

Heart-stopping fear is not supposed to happen to mothers this way.  It’s supposed to come in tiny stages – like when our daughters take their first steps and we worry they will fall and split their heads open.  Like when we send them off to nursery school and kindergarten and wonder if they’ll do well, make friends, survive being without us, and be loved as much by their teachers as they are by us.  Like when they learn to drive and we spend countless nights lying awake, panicking at the sound of a distant siren and only relaxing when they call to tell you they are safely staying over at a friends house or we hear them trying to sneak in the house past curfew.  Like when they go to college and we realize they really are all grown up and we hope and pray we did a good enough job raising them that they will turn into functional adults over the next four or so years without dropping out, losing sight of their career goals, or something worse given what those of us who went to college ourselves know what can happen on college campuses.  And all those other moments in between when we know they are growing away from us and we are helpless to protect them any longer.

But nothing, nothing, nothing can compare to the abject fear that floods a mother’s heart and soul the way a phone call from your daughter telling you that she has cancer does.  And nothing, nothing, nothing can compare to the pain of knowing that no amount of “coulda woulda shoulda” self-flagellation will ever turn back the clock to make things the way they were before – when fear was so tiny, so petty, so trivial compared to the fear you know your daughter now faces and, because she does, you do, too. 

But on the flip and positive side, nothing, nothing, nothing can make your quest to be the perfect mother – the most supportive, the most loving, the most everything – more poignant than the journey you make with your daughter as she takes the lead forging a bravery you could never imagine, a drive to do what she only dreamed of before it might be too late, a tolerance for real pain and disfigurement of her model’s body and loss of her gorgeous hair and awareness that maybe the clock really is ticking and worse, maybe even running out.  And you realize that you do have the strength to be there for her – as much as she wants and allows you to be.

I know I am not alone in the rollercoaster of emotions I’ve experienced over the past year.  I know I’m not alone in the tears I’ve cried, the vicarious pain I’ve felt, the wishing it were me instead of her, the praying I will wake up from this nightmare and she will be well.  The desperate hope for a cure, scouring medical journals and websites for the latest news on potential breakthroughs.  I know that this is what all mothers of daughters living with, and who have already died from, this horrid disease experience.  A disease more unpredictable than New England weather and more damaging that the most horrific storms. 

I also know I am not alone in the love I feel for my daughter and how much it has grown more than I ever could have thought possible.

So I dedicate this Mothers’ Day and this blog post to all mothers affected by their daughter’s cancer.  Who have lived out McDaniel’s plot line, who are still surviving, and who, like my daughter, consider themselves to be thriving.  Because Larissa is.  Despite all setbacks, despite the stress of daily life, despite the normal ups and downs of being a woman in today’s world, she is thriving. And because of her, so am I. 

Motherhood and Mother’s Day has never been more precious or meaningful than it is right now.  And for that I thank God and Larissa and her prince, Martin, for making it so. 

This mothers day I will be spending with my mom and my husbands mother.  I look at them with envy because I will not share these memories with my own kids.  If you want to help donate to research this mothers day and make sure their is money going to research (especially metastatic breast cancer) you could be saving someones mother and daughter!  

(Please specify you wish to donate to metastatic breast cancer research or simply note my name.  Pink Agenda will make sure it will go to the right targeted metastatic breast cancer research!)

I’m not going to write a blog post pretending to know everything that happened yesterday in Washington D.C. I am not going to point fingers.  President Trump made a promise to the people to change and replace the Affordable Care Act, so our cancer community has been bracing ourselves for this day.  I still have hope the Senate will block this but more importantly I have faith in Connecticut; my home state to do the right thing.


Now if you only think “lazy” people will be affected by these revisions or if you think people like me shouldn’t get “free” handouts please let me explain.  I do not get free healthcare.  I actually pay $600.00 per month for my plan through the exchange.  You are either thinking “wow, that’s a lot,” or “oh, you should pay more”… I cannot afford more, but I’m not complaining because I’m thankful for my health insurance.  It would absolutely suck if I couldn’t get good health insurance!  Insurance companies hate people like me because I’m “expensive.”  I have worked since I was 16 years old, I have paid into the system, I have paid into insurance pools when I was healthy and barely used my insurance. I didn’t ask to get cancer. Now that I need my health insurance to keep me alive insurance companies do not want me.


Does the Affordable Care Act need revisions?  Most people say yes, and some people say no. The real question is how to make those revisions so that they don’t hurt millions of people.  Like I said, I’m not going to try to explain those details because I'm not an expert on this.  My father, who is the CEO of Mental Health America, posted his response about yesterday’s passing vote in the House of Representatives, and what that can mean for anyone with pre-existing conditions. Some of you might find it helpful.
Blog Post written by my father Paul Gionfriddo CEO of Mental Health America


Just think…


Do you know someone with a pre-existing condition who might be affected?  You’re reading my blog… right? Well that means you know at least 1 person! So think of me if you must or think of anyone who has cancer, mental health, intellectual disabilities, Crohn’s, diabetes, heart problems, physical disabilities, or another pre-existing illnesses. Fight for all of us!  Call your senators today!

Don't say 'I'll read it later' read now!