Friday, August 19, 2016

Things You Might Be Surprised to Know About Me – The Activist Mom

It is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.

Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.  I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.

These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.

If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:

1.    I’m shy at heart. I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.  Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.  Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.

2.    Asking you to give your hard earned money to my cause is agonizing. I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.  Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.  I hate doing it.

3.    Asking for your time is even worse. We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.

4.    I’m not as calm, composed and pulled together as you may think I am. I am really just a mess with decent organizational skills that I was forced to adopt.  My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can convey my message with confidence.

5.    I would change it all in a heartbeat. Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.

It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.  We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.

I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.

Friday, June 10, 2016

Gradual Change...Place Your Bets

As I contemplated the meaning of what is happening in his life right now, my mind bounced around the last 18 years like the little ball on the Roulette Wheel. Where will it land? Where will he land? But then I realized that he’s not going to “land” anywhere just yet, ever really. We never actually become stationary beings do we? We may stay put for a few rotations of the wheel, but once the spinning starts again, back to bouncing we go. Such is life.

Since I could not allow myself to focus on any one thought about this next chapter in his life, this next spin of the wheel, I chose to go to a concrete source for answers, the Webster’s Dictionary.

[noun, adjective graj-oo-it, -eyt; verb graj-oo-eyt] 
1.    a person who has received a degree or diploma on completing a course of study, as in a university, college, or school.
2.    a student who holds the bachelor's or the first professional degree and is studying for an advanced degree.
3.    graduated cylinder, used for measuring.
4.    of, relating to, or involved in academic study beyond the first orbachelor's degree:
5.    having an academic degree or diploma:
verb (used without object), graduated, graduating.
6.    to receive a degree or diploma on completing a course of study (oftenfollowed by from):
7.    to pass by degrees; change gradually.

The first six versions of the definition were not exactly what I was seeking. Granted, all are accurate; however finite. Number 7 is what I was after with its fluidity. “To pass by degrees; change gradually.” This is what it means to transition from this stage of life, the way it’s been for the past 13+ years, to the next unknown phase. There will be no sudden transformation, no monumental occurrence, which will define the rest of time. If we are fortunate, life happens by degrees; events change gradually. What a relief! Now that is something I can work with. I think he will be comforted in knowing this as well.

The thing about being the parent of a child with atypical needs is that somewhere along the way, you are bound to experience the most intense level of protective you might ever feel. This tends to become evident around the time you first sit across the table from a committee who is there to make decisions about said child’s education. At least it was this way for us. We value education in our family. The fact that our youngest son’s Roulette Wheel spin resulted in him being born with a progressive tumor disorder, which often comes with the added bonus of learning disabilities, was not going to alter this value for this child. In fact, our dedication to setting him up for success was relentless. Okay, his Dad is a Neuropsychologist and his Mom has a Masters degree in Education! Of course, the added credibility, sitting at the table in those meetings, on his behalf was a benefit, but we never did believe in coincidences. We would have done whatever it took to narrow down his odds and give him the least restrictive and most productive environment regardless of our education and training.

We also didn’t create any illusions. We expected that he would work hard and that he would invest himself in his success. Our expectations were the same for all of our kids; apply yourself, take your education seriously, shoot for the moon and never settle for mediocrity, unless that was your personal best. We didn’t reward grades. We rewarded effort, improvement, and attitude. Mostly though, we would never put more stock in their success than they put in themselves. This child was no different. And he demonstrated that year after year. His determination took our expectations straight into outer space!

Our son was already 4 years 11 months when the district firmly denied him a second year of Special Education preschool. After all, they offered a Young Kindergarten class for all students who were not quite ready for Kindergarten, but had been through preschool. This was a one-size-fits-all mentality and it would suffice for all students…despite my insistence that this student was not ready for that level of independence. The same classroom teacher, who had belittled my protests in the placement meeting, took exactly one week of having our student in her class to agree with me. He effectively set the precedent in the district. Never again would a child who was not ready, be forced to attend the Young K program. Score one for us!

When we were trying to make a decision about placement for Kindergarten, we were given two options by our public elementary school: A K-1 self-contained classroom or…somewhere else. Five minutes in this classroom was enough for me to know that the only option was not an option. We had to dig deep, but we were able to find a private school setting with low student/teacher ratios and combined age levels, which ended up being a perfect fit. From there (when the school closed down 2 years later as a result of poor management) it was back to our local public school and a 2/3 Special Ed classroom; a 12/1/1 (12 students, one Special Education teacher, one aide). It wasn’t ideal, but we adored the teacher and she adored our son. He started mimicking some behaviors that weren’t his own and wasn’t really progressing the way we had hoped. Once you are slotted into that setting, they push you through in that setting and he had to change schools in 4th grade to be in the “appropriate” classroom. At this point in time, our child also knew that he was misplaced and he vocalized his objections. We took a giant leap for 5th grade and spun that oppressive wheel once again to find out if he could succeed in a co-taught class with 24 students and 2 teachers, 1/3 of which were special needs.

This was the point in time that I can truthfully say that he started to shine. He met another boy, so much like himself, and they bonded. He had his first honest to goodness, no holds barred, friend and we started to see him gain confidence, develop a sense of humor and become radiant. This was the year he emerged from his cocoon and he became transformed. Who knew that taking that chance, challenging him to a new standard, would give him wings?

5th Grade Buddies

Friends for life

He stayed in co-taught classes through the end of twelfth grade with more intense subject matter and higher level learning and not once did we think we’d pushed him too hard. Quite the contrary, we encouraged him to take risks and made certain that he had a safety net in place at all times, even though he didn’t always know it was there. The boy who we were told might never accomplish much of anything, the one who we were not supposed to expect a lot from, is now going to graduate High School with honors and has enrolled in Community College for the fall. He thinks he wants to study animal science. He also obtained a driver’s license this spring, voted in his first Presidential Primary, started a part-time job and opened a checking account. Shame on those who tried to place limits on the prospects of this child!


The ball is bouncing and the wheel is spinning and it’s going to land just where it is supposed to land and I cannot control the outcome. I influenced what I could along the way, I encouraged, I supported, I informed, I taught, I applauded, I ached and I prayed in order to increase his chances of a win, and that was the extent of my abilities. Now it’s up to him. Now it’s his turn to take the reins and place his bets and I’m reluctant to let go; to walk away from the table and relinquish my role. I know that I don’t have any say in the matter. I brought him into this life and I nurtured him along but it is his life to live and to make mistakes in. It’s up to him to learn from his mistakes and to push on and to celebrate his victories.

But when your child began at a disadvantage and when he has labored every step of the way; had a new challenge at each intersection and didn’t get to be one of the typical kids, letting go is nearly impossible. I hope he knows how difficult this time will be for me so he can cut me some slack when maybe I hover or helicopter, or whatever I do that doesn’t help him to feel independent. I hope he knows that I can’t stand to see him struggle with mundane tasks because he has already had so many significant battles in his life. He has to know this because I couldn’t bear to be the one who held him back in the end, after thwarting the attempts of anyone who tried it along the way. He will know because he knows how much I love him and the one thing about me I am most confident that he understands, is that I will fight for him. I will always fight for him. Go ahead and spin wheel of fortune, this boy is ready for your next challenge!

 “Fear is going to be a player in your life, but you get to decide how much. You can spend your whole life imagining ghosts, worrying about your pathway to the future, but all there will ever be is what’s happening here, and the decisions we make in this moment, which are based in either love or fear.So many of us choose our path out of fear disguised as practicality. What we really want seems impossibly out of reach and ridiculous to expect, so we never dare to ask the universe for it.”
~Jim Carrey, Commencement speech

Tuesday, March 1, 2016

Fighting NF on Capitol Hill

On Friday, February 24, 2016, I was pleased to be a Guest Blogger for Children's Tumor Foundation on the topic of NF Advocacy!

If you've ever wondered what is involved in being a political advocate for a cause, this blog post may just answer your questions. 

"There is something very powerful in knowing that you have a voice with important issues and that you can be heard. For me, NF Advocacy has become not only my right, but my responsibility as a mother..."

Tuesday, July 7, 2015

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 18th 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!

Wednesday, May 20, 2015

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

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.

Thursday, January 8, 2015

Let Go, Let Baseball

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 TiesTogether 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."