Tuesday, May 6, 2014

Baseball dreams, my Cub in training.

When Parker was younger we signed him up for t-ball through the park district.  I knew at this time he had Fragile X Syndrome, I knew he wasn't where his peers were but he wasn't that far behind either.

He was welcomed onto Bob's team with open arms.  The parents quickly embraced us, even though I cried through basically every game and by the time I pulled it together to relax and enjoy the game - the season was over and I cried even more.

Parker advanced to Coach pitch, he was sooooooo close to hitting the ball.  You could see the determination in him and his coaches.  Because of Parker's delayed reactions we encouraged the coach to yell "Swing" as he began to pitch the ball.  This timed it to make hitting the ball possible.  One game, late in the season after many near hits Parker was up to bat.  After his 5 strikes, his Coach, Scott, said, "One more" and pitched again.  Parker swung and missed.  Scott repeated "One more" and Parker repeated his swing and miss.  Each swing was so extremely close everyone knew he almost had it.  I was pressed against the fence with my camera ready.  After the 10th pitch and strike I said, "It's ok" and told Parker his turn was over.  The coach from the opposing team said, "Keep pitching" and Scott told him to stay put while he tried one more time.  With that 11th pitch, Parker connected and hit a very beautiful hit to the outfield.  With great instruction and encouragement Parker was told to run and he ran!  When he got to first, they waved him onto 2nd the kids "over threw" the ball and Parker was instructed to keep running to third base where the ball was also thrown next and "missed" by the 3rd baseman and Parker was given the green light to run to home plate.  A home run, in a league with a 2 base rule... I'm not sure who had more tears that night, me, the parents on Parker's team or the parents on the opposing team who were cheering just as loudly.  It was an amazing evening that I will never forget and brings tears to my eyes each time I recall it.

That was Parker's final year of baseball.  Everyone knew he could not keep up with kid pitch and continue to advance.

Parker wasn't overly interested anyway.  He was doing it because we wanted him to, it was for us, not him but he loved to be around the other kids.  He adored his teammates and had fun despite his frustration.

That was pretty much the end of all sports until Parker started Special Olympics around his 8th birthday, which he continues to participate in to this day.  In our community, Track/Field and Basketball are the two options for Special Olympics and Parker does both, even though he clearly prefers basketball. We are extremely thankful for our Special Olympics program and the incredible changes we've seen in Parker because of this great opportunity (and the amazing friendships he's made).

I had hoped his participation would spark an interest in sports but it just wasn't happening.  In all of the conferences I attended with Fragile X I kept hearing the same thing over and over, that kids with Fragile X always had an area of interest.  This was missing with Parker.  While I met hundreds of people who would share with me their child's interests and obsessions - Parker didn't have one, at all.  It was hard, in a world I was trying to fit into and relate the one area where everyone had a story... I had nothing.  Parker not only didn't fit the mold in the world we lived in each day but he didn't fit in the Fragile X world either.  It was something that left me feeling lost and at times isolated.

That changed with the introduction of PillowPets... which he now has 80 some of. Not exactly the interest/obsession I was hoping for but it's not exactly the type of thing you get to pick as a parent so I ran with it (obviously, he now has 80+ pillowpets).  And of course, inflatables... but still not something that was like any of the other stories I was hearing.  And, I still couldn't get him interested in sports beyond his own playing in Special Olympics.

Then, a couple of years ago Parker got an iPad and our lives changed.  Parker's favorite app - the ESPN app - he knows his way around that app with his eyes closed and also insisted it was installed on my phone so it's always available.  And there it started...his obsession with football.

Although he wouldn't watch it on TV, he knew every team, who was playing who and who would win.  After awhile I began to record his weekly pics and put them on Facebook for everyone's enjoyment.  He would confidently say who would win and who would go home "Crying to their Momma" and who likes what team.  By the end of the season, Parker was watching football on TV (Da Bears of course!) and really enjoying it.

With the ending of football season, Parker picked up on basketball - originally only following one team - Da Bulls - the first year he now has several he watches the scores of faithfully.  With time he started to watch a little on TV and thanks to the encouragement of our neighbor, Tyler, one of Parker's favorite things to do while shooting hoops in the driveway is the "Micheal Jordon" shot!

Baseball though, that's taken a little longer.  Parker would quickly tell you that he is a Cubs fan - honestly he has no choice, if he's staying in this family - he's going to be a Cubs fan!  But, he really could have cared less about baseball.  He didn't want to watch it, he didn't care about the scores, he had zero interest in it. Until this year...

This year he's been watching closely the scores, he can tell you everyone's favorite teams:
Melissa likes the Red Sox
Chelsea likes the Reds
Mrs. Wildebour likes the Pirates
Drew, Devin, Christian, Horton and Coach Scott like the Cardinals
but Parker... Parker loves the Cubs - "My babies" as he calls them.He knows who is playing, when they are playing and what time they are playing.

Finally, at 14 (15 now) Parker had that "Fragile X interest" that everyone has talked so long about.  By now, that wasn't something that was typically front and center in my mind, I'm happy anytime there is something on the TV that isn't a pre-school show (Sorry, Jake and the Neverland Pirates!) and I have found my place in the Fragile X world.

Ever since opening day this baseball season, Parker has turned on the Cubs game whenever he gets the chance.  He watches, of course, with his iPad and ESPN app up, in hand.  I have been loving this but never expected it to go any further...

Then last night happened.  He went to the garage and got his baseball glove out of the storage box and a ball and begged me to take him to the ballpark to play.  There was no way late this late in the evening we could make that happen.  We tossed the ball around in the back yard a bit and went inside.  I didn't expect it to go any further.

Until tonight.  As soon as I finished work, Parker was begging me, honestly begging me to take him to the baseball diamonds to play ball.  He wanted me to take a bat, his glove and 2 balls. Knowing the diamonds would all be occupied, we went to the diamond at Eastview grade school - which was also convenient as Allison was at volleyball practice right across the street at the middle school.

I honestly had no idea what to expect.  With Parker, it would not have surprised me to arrive at the ball diamond and him not want to get out of the van at all... so whatever happened would be a surprise - and honestly I wasn't sure what he had in mind.  When we arrived at the ball diamond, he jumped out of the van, handed me the bat and said, "let's go!"  And we did.

Parker went directly to where the pitchers mound would be and said, "I pitch. My team, my babies, Go Cubs!"  I said, "Alright, you pitch - I'll hit"

As I stood there with the bat in my hands looking at him sheer terror went through my body.  Parker has an arm of steel, this kid has been throwing things since he was an infant.  He can throw... and here I was saying "Throw it at me!"  My anxiety started to kick in, I reminded him to throw it carefully, aim at the bat, and throw it soft... SOFT.  After about 5 minutes of him looking at me, me taking  couple of pictures and reminding him how to throw the ball - I finally looked up and really looked at him....

There he was.  In position, ready to pitch, patiently waiting for me to stop internally freaking out and taking pictures.  As I looked at him, I didn't see Parker with Fragile X, I saw Parker - the 15 year old who loved baseball and I started to cry.  As tears fell what could have been flashed in front of me.  I never intentionally let myself go there, it happens when I least expect it and I can't control it.

Time stood still and with warm tears streaming from behind my sunglasses down my face I wondered if  he didn't have Fragile X, would he be the athlete we had all predicted he would.  There was something so natural about the way he stood, the way he held the ball, the way his glove fit.  There was a comfort to him, a peace to him, a love that was shining from the inside out.  For the first time in a very long time, I was angry.  Angry at what has been taken from my son.  Angry at the opportunities that he'll never have.  Angry that I'll never know who he could have been.  Angry that he will never know.  Angry that the world will never know. Angry he was never given a chance.

And then, as quickly as that moment happened Parker ended it with this...

Parker yelling at me to put the phone down so he could throw the ball.  So, I did.  I put the phone back in my pocket and with a deep breath said, "Ok, throw it" and throw it he did.

Like a line drive that just cracked off the bat, he threw a hard fast ball directly at my head. Directly. At. My. Head. I knew there was no way I could move so I did the next best thing to protect my head, I put my hand up to catch the ball in my bare hand - or hit it out of the way which may be a better description.  As the ball connected with my hand and I caught/pushed it out of the direction of my head my hand stung with pain. My mind thought "This is the worst idea we have ever had.  I am standing with a bat in hand asking my son to throw balls at me.  ME who is afraid of getting hit by a baseball."  I could, however, see in his face how much this meant to him so I said, "good pitch!"  and with that he took the other ball out of his pocket and got ready to throw.

With each pitch, he got a little better and with every single pitch I told him - no matter where it went - what a great job he did.  And, on the times I connected (by jumping, wildly swinging or reaching) I said, "Good hit mom!!  Parker, tell me Good hit mom!"  And he'd mumble "good hit" It worked for me.

I'd toss the ball back being sure it would land a foot or two in front of him.  He'd put his glove on the ground and get in front of it each time, like he'd been playing for years.I'd tell him what a great job he was going getting in front of the ball.  My mind would occasionally flip back to that wonder of what if but also became less angry at the unknown with each passing pitch.

Every time I'd look up, I wanted to remember these moments forever - so I took pictures whenever I could.

 And with each pitch, every throw back to him, I'd praise him.  His pitches were hit and miss.  Some were perfect and easy to hit, some were so high over my head that even with the out stretched bat and my jumping I'd still get a "strike".   I hit a few foul balls that ended up high in the sky with my ducking and hiding under my hands until I'd hear the ball hit the ground, I am sure it was an amusing sight for anyone passing by.  But, we laughed, we worked hard, we played baseball, we had fun.

He never wanted to hit, he only wanted to pitch.  He wanted to practice, he wants to play for the Chicago Cubs.

Real baseball dreams.

We played for over an hour, when Allison got out of volleyball she came across the street and this happened...

Two pitchers improving their skills.  We played for another 20 minutes before heading home for supper.

After supper, Parker wanted to go play again.  We started in the neighbor's lot across the street but quickly realized the importance of the fence behind me for those wild pitches and returned to the school's baseball field... what started like this
(Parker is behind Allison, just kinda hard to see)

ended with this...

in a field, too dark to see balls being thrown at me with a boy who didn't want to leave the field.

He's already talking about going back to play again.

By the time we drove for ice cream in the dark, my anger was gone.  The what ifs had passed and my appreciation not only for today but also for the difference he has made in the lives of many filled my mind instead.  There is no way for anyone to know what their child's life will be like and there is certainly no time for me to be angry over what may have never been when I can appreciate the moments of today instead.

Our very Fragile X life has been filled with curve balls.  Sometimes we are able to jump out of the way and they slide quietly by.  Other times, we've taken a line drive straight to the leg or shoulder or a wild pitch to the head.  But every time, we've brushed off the dust and walked back out onto the field ready for the next pitch, the next hit, the next game.  Whether it's a natural instinct or our amazing coaches, we let our determination and passion lead the way to our next home run - and encourage others to Play Ball.

*Updated note... after posting my blog on Facebook, I have received a lot of wonderful response. There is one I want to remember forever and I feel it belongs here with this snapshot of our lives.  Thank you, Scott, for this - it means the world to me.


  1. Absolutely Beautiful story Holly.....you and your children are truly inspirational, thank you for sharing.

    1. Thank you very much, Jaimee! <3

  2. Love, love, love. Play ball. Dance. Dream. embrace this life and LIVE IT! thank you for encouraging us, for showing us it's ok to feel anger and grieve, then move on, move forward, and make it amazing. xo