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

Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is because he was given this unjust life sentence of having a progressive tumor disorder.  He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it?  

In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way.  I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."

It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools.  Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself.  Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots!  I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car.  She held the mitten up to me and assaulted me with her request, "Me too."  In my frazzled state, I was even irritated by her incompetance!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other? 

In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net.  My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life.   

Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.

   2. "You need to figure it out on your own."

How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother?  Too many times to count. 

Although I do feel some guilt about this, I don't think this was entirely a bad thing.  I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills.  There are whole articles written on this topic.

I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. 

  3.  "I expect more from you."

I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.

 This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I?  I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.

Of course, I have the same kinds of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage.  I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him.  This is the most troubling aspect of all.

Now for my apologies:

To my Biggest Kids, 

I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs.  I love you with every ounce of my being and wish for every happiness in your life.  You are strong, you are capable and you are amazing. You are not inconsequential in any way.  There are some very important life lessons that you learned by being his sibling.  I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize.  I never wanted you to feel that way.

 To the Baby,

You may have been born last, but you were not often given the opportunity to be the baby.  Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you.  I have expected things from you that were far reaching for your age.  I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could.  You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister.  You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations.  You have never complained about any of this and you have never expressed any wish to have it be different.  I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind.  You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express.  My hope is that you will never again in your life have to say, "Me too."

My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers.  Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation.