Marriage's Chais and Lows

On July 7, 1997, I married the man who I believed in with every ounce of my being. It was a civil ceremony. We had both been married before and each of us had two young children whose needs we were obligated to consider, and two not yet realized. Our vows were not just to one another, but to the family that we were about to create. The odds were against us. 70% of second marriages with children fail. We were bound and determined to beat the odds. It wasn't easy. Actually, it is damn hard at times. In addtion to the second marriage stats, there are the stats against couples with special needs children. It has been documented that there is a higher divorce rate in these families than in the general population. In some ways, for us, having our son with NF was the glue that bound us together.

With our mutual devotion to the NF cause and our unwavering support for our son, we have always had this point of cohesion. I am aware of the blame factor that happens between couples in our situation. There is also often jealousy that comes into play with the demands for time that a child with special needs requires. We have been very fortunate not to have fallen into these two traps of marital destruction. I suppose part of that was due to the multiple other dynamics, all vying for attention, in our union, but whatever it is, I am thankful for it because I know myself well enough to understand that this would have been my breaking point.

On September 7, 2003 despite the huge obstacles and impossible probability, we consecrated our marriage under God in a religious ceremony, surrounded by our family and our friends. It was an incredibly meaningful and spiritual day.  Again, we took vows. This time our promises included six children, one another and a higher power. This was not a decision that we took lightly. It was a renewal and a new beginning all at once.

Today, we have reached our 18^th year of matrimony. The number 18 has tremendous significance in Judaism. It is the number Chai, which means living or being. Since life is the highest of all blessings, this number carries great weight. Marriage is not passive. It is active, with constant energy needed to sustain its life; its Chai. The dedication and commitment that is made in a ceremony of marriage, is not to be forsaken and Peter and I have had to remind ourselves and each other of that many times through these 18 years. We have so many lives, including our own and our pledge before God, who depend on us to continue to defy the odds of second marriages and we remain true to that, even when it has felt impossible.

Our 18 years have had beautiful moments: the births of our two children, Jesse and Alexa, the B’nai Mitzvahs of all our children, the graduations, accomplishments and family togetherness that we embraced. There has been loss, imperfections and heartache as well; as is with life, or Chai, which we have somehow managed to survive together. There is only one thing that I want for our Chai anniversary. That one thing, is actually not a thing at all, it is a philosophy. I want us to have the clarity to remember this day 18 years ago and everything that brought us together, everything that kept us together through the last 18 years and to foresee a future of being together for the next 18. 

L’Chaim, to Life!

Chai-ya! Take that, Statistics!

I kNow a Fighter...or Two...

I kNow a Fighter

I know a teen-aged boy with a million dollar smile.

He loves dogs and playing Xbox.

He is happy; existing as though he has no worries.

He has tumors throughout his body and he always will.

He knows no self-pity.

He is a Fighter.

I know a sparkly girl, who adores pandas and going to the car races.

She has a tumor in her brain and she is maturing more

quickly than the girls she loves to go swimming with.

She never complains.

She is a Fighter.

I know a brother and sister with a twinkle in their eyes.

Reading is his passion and hers is for animals.

They were born with a genetic condition.

His neck tumor threatens his ability to swallow or even breathe.

He is on a waiting list to try a treatment that may not even work.

They put on capes and they lead their 

community in a charity walk.

They are Fighters.

I know a daughter graduating from high school.

She is compassionate and kind and loves

making her friends laugh.

School work is harder for her. It doesn't stop her from trying.

She educates the public about the disorder that

Caused her brain surgery.

She is a Fighter.

I know a son who will study engineering in college.

Music and friends, being a typical teen are what matter to him.

He has had 14 neuro-surgeries in 7 years.

The disruption in his life is unacceptable, but is not a barrier to his future.

He is an ambassador for the cause and when he speaks,

He inspires.

He is a Fighter.

I know a tiny girl who sings and hides her face from the camera.

She likes girly things, teasing her brothers and pulling at heart strings.

She has never known a day without pain

Or a life without struggle.

She is a Fighter.

I know a courageous mother, a proactive father, a supportive Grandma, a Devoted sister and 

An Aunt who always shows up.

Inside, their fear knows no bounds.

Outside, they only show strength and perseverance.

They organize, fundraise, advocate, study, investigate, educate, run, walk, swim, bike, hold hands, wipe tears, and pray for eachother.

Meanwhile, they smile and they never lose hope.

They are Fighters.

I know a Foundation. It's colors are blue and green.

There are scientists, researchers, leaders

And a board of directors.

There are managers and program directors, coordinators,

Team leaders and interns.

And there are volunteers.

Each works passionately toward the same goals.

They support those living with Neurofibromatosis (NF):

Providing tools for activism and empowerment,

Events for funding and community building,

Campaigns for advocacy and awareness,

And most importantly,

They research

For 

A

Cure.

They are Fighters.

I know a donut-loving friend with bones that don't easily mend,

An undie running young man with big personality and limited mobility,

A pageant winning beauty with spirit and pride,

A legally blind canvas painting prodigy with philanthropy,

A rugby playing paralympian with an alter ego,

A softball loving little princess with an amputation,

A curious crew leader with a big heart and an eye patch,

An aspiring disc jockey with a shy smile and learning disabilities,

A mini, wise-cracker with big guns and chronic pain,

A debuting young video director with a cheek tumor and an aneurism,

A tough, Irish golfing fan undergoing chemo therapy,

A baseball slugging little man with a mischeivious grin and low muscle tone, 

And I know angels...

With butterfly garden memorials,

Lives interrupted,

Dreams abandonned,

And greiveing families.

I think it's safe to say that I know a Fighter...

or Two.

Let Go, Let Baseball

It all started with a declaration from the back seat, "I want to play baseball."  I looked in the rear view mirror and saw the pure determination in the clear blue eyes of my 11 year old son and I forced myself to swallow my resistance.  In a typical situation, this would seem like a normal request from an 11 year old, raised in a household of die-hard Yankees fans, but Jesse's situation wasn't typical and he had never played an organized sport before. My instinct was to protect him from the cruelty and intolerance of the kids his age who had been playing on little league and travel teams for the last 6 years of their lives. In hindsight, I am thrilled to say that I didn't give in to my insecurity on this occasion. If I had, Jesse would have been denied a valuable experience that ended up being a precious gift to us all.

Naturally, a mother wants to protect her child, right? This is especially true when the child is "less-able." I use that term because I can't bring myself to call him disabled or special needs because he is able, just not as able as some other kids his age and he does have special needs, but don't all kids have individual needs? I know it is just semantics; but it matters to me because I never want my child to feel that he is "dis" anything. I want him to feel that he is special, but even that word has taken on derogatory meanings that have nothing to do with him.

Jesse was born with a spontaneous mutation of a neurological disorder called neurofibromatosis, type 1.  For Jesse, this resulted in learning delays, spinal cord and ankle tumors, a leg bone on the right side that grew faster than it's mate on the left, a tumor in his brain on the optic nerve, low muscle tone, balance and coordination issues and, by the grace of God, the naive inability to see himself as being any different from his peers.  That burden was given to me instead.  I did my best not to let my inner mother lioness hold him back from trying anything and everything he was intent on giving a shot, but this was physical and boys of that age could be awful and I was genuinely concerned about the potentially very bad outcome that could result from acquiescing to this particular demand.  I found a compromise. I signed him up for the Challengers league. His team was called, The Yankees.

CaringBridge entry: May 24, 2008

"Yes, I'm getting good hits. It's real fun to be in little league baseball. Whenever I'm on base, I keep my eye on the batter and when they hit it, I run to the next base as fast as I can. Thank you for signing my guestbook. I like getting your notes. It makes me happy." -Jesse

Well I went to the game today...At first I was sitting there absorbing all that was going on. I saw so many kids with MD, CP, severe Autism and other handicapping conditions. I was thinking that my child didn't fit in and that he didn't belong there. And then...I overheard Jesse talking to one of the boys in a wheel chair on the field. With such pride in his voice, he told the boy, "I've never played baseball on a team before."It touched me so deeply. I got all choked up and with tears welling in my eyes, I admonished myself for thinking that he didn't belong yet one more place. He does belong. Anywhere that makes him smile and feel proud of being a part of something bigger than he is, is a place where he belongs. He doesn't look around that field and see disabled kids. He looks around that field and sees baseball players. Once again, my beautiful boy taught me a lesson in humility.

Jesse finished the season with the challengers in a "World Series" game at Frontierfield and earned a trophy for participation, just like everyone else.

He enjoyed the introductory experience to baseball, but was fully aware of the differences from "regular" Little League. He had been going to his sisters' games for years, and he yearned to play with the full experience. The following spring, we lost our baseball champion; Grandma Genie, an original Brooklyn Dodgerette in 1942, who passed away just a few months after her 90th birthday celebration. Jesse was also scheduled for his first growth plate surgery later that summer. Baseball wasn't in the cards. But in May of 2010, he was still highly motivated to live the American dream and play ball, so my husband, a Little League softball coach for several years, contacted the league coordinator and explained the situation. We wanted to increase the chances in any way that we could that he would have a positive experience. It was a gamble that we agreed to take so that we could give our son his rite of passage as an American preteen boy. Within 24 hours we got a call that a coach and team had been hand-picked for Jesse. He had been placed on a AAA team, Doyle Chevrolet/Subaru with Coach, Mike Kirby and Assistant Coach, Sean Kennedy. 

The kids on the team were a year younger than he was (he was 13 by now) and the coach and his assistant were both known to be encouraging and have a big-hearted approach to the game. We also contacted an organization through the school district called Ties, Together Including Every Student, which matched a trained peer volunteer with Jesse to provide support and encouragement during the games.  His name was Aaron and he showed up to every game. The bonus was that he was a mutual Yankees fan; he became a good friend to Jesse.  

Since the season had already started, Jesse's first practice was not the team's first gathering; they had already begun to bond. The coach introduced him to the team and explained some of his limitations in front of Jesse, in a sensitive way that didn't embarrass him.  I stayed at the first few practices and watched closely for any sign of unkind behavior; ready to pounce. After his first game one of the boys yelled out, "Let's give it up for Jesse, the new guy!"  I was overwhelmed with relief and let my guard down enough to stop staying at his practices.   He got a hit at his second game.  He also got hit by two pitches and walked both times.  He didn't strike out even once and began picking up the fielding techniques he was learning.  He was trying so hard that it was sometimes painful to watch, but it was going really well and he was so proud.

"There may be people who have more talent than you, but there's no excuse for anyone to work harder than you do - and I believe that."
Derek Jeter

Jesse was blossoming. He was a part of a team. They won some and they lost some and he took quite a few pitches for the team, but the commonality was his huge smile at the end of every game.  He played third base and the outfield and he tried so hard every single time. He didn't play every inning and he fatigued easily, but he never complained and he never gave up. I held my heart in my hand with every at bat, not because I was afraid he would strike out, because I knew how badly he wanted to do well for his team.  There was one show-boaty team in particular which created anxiety, AT&T, in the bright orange jerseys. The coach was loud; often deprecating, and the team did a "victory lap" after every game they won.  As with all great Hollywood endings, Doyle Chevrolet was slated against AT&T in the championship game. What a nail biter it was!

CaringBridge entry: Jun 30, 2010 8:21am

The baseball season ended like a fairytale! Jesse’s team won the AAA Championship!!!  It was such an exciting game and an amazingly inspirational season.  To see the beaming smile on Jesse’s face each time he took a base, either by a walk, getting hit by the pitch or on a few occasions, due to a bunt, made it all worthwhile. Jesse learned much from his coaches, teammates and also from his TIES volunteer, Aaron.  Dare I say, I think he taught them all a few things as well?  He teaches me things about myself and about life constantly and this experience was no different. As I was “coaching” him to swing and take a chance, his coach was teaching him about pitch selection. I learned that I should definitely leave the coaching to the people designated for that purpose. 

In his end of the season email, Coach Kirby pointed out:

“I think the most important lesson we all learned is that when we rely on each other, from the best player to the one with the weakest skills, we win. Just in today's game,think about how important pitch selection is to a successful at bat.  I've been working with each of you on that all season. Today Jesse walked twice, making sure not to swing at pitches that were out of the strike zone.  This turned out to be key in our victory.  In one of those walks, he drove in a run (got the RBI).  Another one of those walks, he ended up coming home and crossing the plate. Those two runs and two outs could have been the difference in the game. Throughout the season, each of us were looking for how we contribute to the team, and how we make a difference.”

Not only did Jesse end the season with a great trophy (that he earned), but he made a lot of friends and gained a life-changing experience to add to his mental scrapbook.  I am so glad we took this chance and gave Jesse this wonderful opportunity, another lesson learned!

And there you have it; the run that won the championship!

Although he attempted to play one more season, the following year, the kids were older; a little more capable, a little less forgiving. He was older too and was gaining self awareness. There had been two leg surgeries by that final baseball summer and it just wasn't the same.  He reluctantly had to stop playing about 1/2 way through the season because it proved physically to be too hard on him. 

Jesse will always have the memories of winning the championship with his team, Doyle Chevrolet, and he will remember that feeling of standing in the dirt, with the sun on his face and the breeze in his hair, listening to the crowd cheering him on, for the rest of his life. As parents, we are wired to protect our children even though doing so may mean that we prevent them from gaining a valuable experience.  This time, I stepped way out of my comfort zone and exposed my son to potential doom. Thank God I did!  Baseball surely enhanced my less-able son's life in a primal way that is incomparable to any other thing that could have shaped him.  

"Love is the most important thing in the world, but baseball is pretty good, too."

Yogi Berra