Clouds, May 2010

Clouds, May 2010

Wednesday, December 5, 2012

poppy freddy

My grandfather adored babies. The day before Thanksgiving in November of 2001, when Dan & I saw Poppy on the eve of our engagement, I remember him in the doorway of my childhood home in Livingston. My grandparents arrived through the back door & had not even entered the family room yet, when the first thing my grandfather did was cradle his arms like he was holding a baby.

I was the first grandchild to become engaged & before he even uttered a "mazel tov", he wanted us to know his first great grandchild could not arrive fast enough.

My grandfather was a brilliant man & he was also a physician. I remember his Doctor's office attached to my mom's childhood home, & that of her three siblings. There was a door off the kitchen which led to the x-ray room & although I remember very little of the waiting room & exam rooms, I do recall a few occasions when Poppy removed his grandchildren's loose teeth from inside there. I also remember stories of us kids visiting him on the job at Hackensack Medical Center & my apparent curiosity in his work... such as the time I supposedly watched him stitch someone's finger back on following their motorcycle accident... as Jenna screamed & ran away.

I remember the way he ordered his soup at a restaurant. He would tell the waiter or waitress to make sure it was hot, & always specified temperature-hot but not spicy-hot. I remember he loved rice pudding as much as me but he would prefer to hold the cinnamon. I remember he loved chow mein, & I remember where he sat at the dining table in their old Victorian home: at the head on the opposite end from the doorway to the kitchen. I used to sit on the side opposite my grandmother's hutch. I remember many Passovers, when he skillfully pulled off a very believable Elijah presence.

But I also remember as I grew older so did Poppy. His handwriting became shaky, he was unsteady when using utensils, & over the years his balance & ability to walk were affected. As his motor functions declined over time, he went from using a cane, to needing a walker, & eventually a scooter. Mentally he was completely aware & understood he did not have Parkinson's, but at the same time the doctors did not know what was causing his tremors. His symptoms were ultimately chalked up to excess fluid of the brain due to natural aging. He had continued physical therapy & following surgery to drain some of the fluid he exhibited temporary improvement, but the tremors returned & when they did they were more severe.

In January of 2005 we visited him in the hospital in Portland, Maine to say our goodbyes. I told him the two names we chose depending the sex of the baby, & he mouthed to us that they were "beautiful". In June of 2005, approximately five months following his passing, our healthy baby boy entered this world.

Today, December 5, 2012 would have marked Poppy's 95th Birthday. Although he never met H, or knew I was carrying a boy, he did know he had his first great grandchild on the way & that in itself means more to me than I can put into words. It's an invisible bond that I am so fortunate to carry with me. Little did we know, that the year following Hayden's arrival, we would also learn that my son & grandfather share a very special gene as well.

Hidden in his DNA, & oddly in his very own name, Dr. Francis X. Rosner carried the FX gene. Four out of his seven grandchildren had a 50% chance of receiving this gene, but I was the sole lottery winner of this special X. This would all be revealed through our son Hayden, when he was diagnosed at 17 months of age.

As of last week that was six years ago. Although I can not begin to summarize the education we have gained during these last six years, I can tell you that it includes an answer to Poppy's symptoms called Fragile X-Associated Tremor/Ataxia Syndrome... commonly known as FXTAS (pronounced 'fax-tas'). FXTAS is a trait of male carriers of fragile x.

You know, to an extent I believe in the idea of a presence watching over all of us. Poppy, if this is true you will already know that lately we've had a difficult time with Hayden. Even just the last couple of days have been pretty rough. I thought about venting via my blog, but this time I decided against it. Writing is often therapeutic for me, but other times it feels like I'm reliving something difficult & I'd rather move on.

We're still going through the process of finding an appropriate treatment for Hayden, to help with some of his difficult behaviors. (Including another appointment with a new specialist tomorrow, actually.) But I need you to know something. For every bad day, every challenging behavior, every meltdown, & every tear that is shed... it is all outweighed by an immeasurable love inside of Hayden. And I wouldn't be able to appreciate such a beautiful, rare perspective if it weren't for you.

Not all fragile x days are bad days. Most of them are filled with moments like last night, when I sat down on the couch & casually said to no one in particular that I was cold. Hayden was in front of the TV watching a movie in his PJs, with his Thomas the Train blanket. He walked over to me in response, placed the blanket on me, & then sat in my lap.

I have a son who keeps me very warm from the inside out, & we have you to thank for that.

Happiest 95th Birthday to you, Poppy. I hope you're on the balcony in Palm Beach in that yellow chair... relaxing in the warmth of the sun... listening to the ocean behind you... & enjoying the best back scratch you ever had in your life.

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