Mother. Father. Daughter. Son. Spouse. Sister. Brother. Grandparent. Aunt. Uncle. Niece. Nephew. Friend.
If we are lucky, we connect the word “Inspiration” with one or more of them in our lives.
It’s been a really long month. And on the surface we have been preparing for the Second Annual “Jeans for Rare Genes” Fundraiser at the Hilton this Sunday, February 21st. ( TICKETS FOR THE FUNDRAISER – HERE )
My husband has been wrapping baskets. My daughter has been soliciting donations, and publicizing the event. She was invited to speak at a Young Republicans Meeting, a Junior Giving Circle Meeting at IS75, and she was invited to speak to PS30 in Westerleigh. Tonight she is thrilled to be speaking at the Staten Island Giving Circle Meeting. Staten Island Giving Circle
I have been trying to stay on top of vendors, and seating, and tickets. But I have been distracted. We have all been distracted.
Those two, in the center, my grandparents, are at the center of this family. They are the inspiration. It is their ripple effect that allows all of us to do what we can to make the world better. They are married 70 years. She is 95. He is 96. And until just over a month ago he lovingly cared for her with the limited assistance of my mom and a 4 hour a day aide. He cooked, cleaned, shopped, did the laundry, paid the bills. And endured a great deal, out of love. Pure love.
My grandfather spent 4 years in service to our country during World War II. He married my Grandma a few weeks after returning in December of 1945. He became a member of the FDNY for 23 years. They raised two children. They acted as second parents for many years to my older sister and myself. We watched Pop, a man of faith, not talk the talk, but also ‘walk the walk.’
I learned the meaning of inspiration through his humble humility. I learned love by watching him kiss Grandma every time he left the house. I learned generosity by watching him give of himself, unceasing, to neighbors, friends, and especially family. He inspires my life, and daily inspires me to be a better person.
His health is failing. In one month the transformation is utterly disturbing. And yet, he managed the strength to mouth the words to “Jesus Loves Me” and the Lord’s Prayer on Sunday as my brother-in-law gave us communion. I’ve been distracted by one of my inspirations.
His stubbornness, one of his best, and most challenging qualities, is one I passed on to my daughter.
Most of you know her story well. For those who don’t I’ll give you the shortest version I can.
She was born in distress, spent 4 days as the biggest, fiestiest baby in the NICU before heading home. There was a year or more of colicky sleepless nights, which melded together with hospital visits, the first of many surgeries to come, developmental delays, early intervention, and so on. By the time she was three I had CPSE telling me she’d never sit in a normal PreK or a regular school. We read, and researched, and peeled away layers in ways that were sometimes conventional and sometimes alternative. We found a combination of strategies that left my girl in an honors program early in her academic career.
The surgeries kept coming. The doctors appointments were relentless. The Physical Therapist Dr. Jill who loved her so much, pushed me to genetic testing. There the diagnosis of PTEN mutation, or Cowden’s Syndrome changed things forever.
Now there was a name. Now there was a reason. But now there was so much more to be worried about. Now people scurried and scampered about and whispered and doctors “googled” while we were in the room. Now her diagnosis prompted MY diagnosis, as Cowden’s is inherited. And so much of my own medical history made sense.
Four years ago I was pushed to undergo a bilateral mastectomy. It was supposed to be prophylactic based on the insane breast cancer risks for Cowden’s Syndrome patients. And then on pathology there was the breast cancer diagnosis, and the realization that my daughter saved my life. Humbled.
The surgeries persist. And get more complicated as the years go on. Life gets more complicated when you are 12 and in Junior High. Kids don’t really get this life. And well, they shouldn’t. But it gets lonely.
Sometimes she gets angry. Mostly she tolerates the loneliness. Mostly she channels her energy. She dreams of cures. She knows cures take money. So she spearheads fundraisers. She talks even when no one listens. She is grateful for her Cowden’s in the midst of the rare diseases we have seen.
She gave up soccer, and running, and dance. She hurts after normal kid play. She gets frustrated. Then she swims. Not to be put off, she found the place she can compete. And she pushes herself to be better every day.
She does well in school. Although it’s not always politically correct to talk about it. I’m her Mom, so I can say it.
She gets up every day. She smiles. She reaches. She inspires. Me, and countless others. I am one of the lucky ones who has been inspired by many – right in my own family.
So, a few weeks ago when the local paper asked for an inspirational Staten Islander, she was my natural choice. And I wrote, honestly, and without a second thought.
When the paper came out asking for us to vote I read every bio. And I was inspired. By all of them. Then Meghan read them. She was so touched I had written about her, she told me she’s be proud to lose to any of them.
There was a Facebook post this morning by the daughter of another nominee. Her Dad sounds like a stellar man. He offered to do anything for Meghan. He is kind and generous of heart. The daughter is lucky, as I am lucky. We have inspiration right in our own families.
Maybe we can all meet at the fundraiser Sunday!
You can read all about all of them and vote below.
Somehow, I think they’ve all won.
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