#BeyondLimits

Hello October!!  Not only does this month mean that the cool, crisp weather of Fall has officially arrived, but it also marks a month that has become my favorite simply because I get to share my SB journey with you.  Well, technically it is Jarrett's journey, but I have been lucky enough to be apart of this roller coaster of highs and lows, buds and thorns. I honestly could not have imagined my life without SB or without Jarrett.

A brief history about how our journey started.

Jarrett was diagnosed during my 20 week ultrasound on December 17, 2008.  During this appointment I learned nothing positive about this life growing inside of me.  I was never told the what ifs, but was told all of the negatives this life would carry.  All of the negative comments lead to the most unforeseen request....to abort.  I was urged and encouraged to abort this life.  This small child who had a heartbeat, could blink, suck his thumb, hiccup, move within my womb, kick, move his fingers and so much more.  The only thing this baby could not do was speak. How could I even think to take a living child's life without their voice or involvement.  With every movement of his body my answer was clear....NO.  No, I would not end this life or any life.  I knew this child was beautifully and wonderfully made.  He was knit in  y womb by the creator of heaven and Earth.  I knew God had a plan for this child and for me and I would not be the one to disrupt His plan.

Jarrett Roland Kane was born via C-section in the Garbose Family Special Delivery Unit at The Children's Hospital of Philadelphia at 11:34 pm.  He was moving his legs, crying and with his back lesion fully intact.  He was whisked away to the NIC/U to keep him safe before his back would be closed 10 hours later by his neurosurgeon, Dr. Leslie Sutton.  4 days later I finally got to hold this little miracle.

So much has happened, both good and bad, since that miraculous day.  We have had therapy, lots of physical therapy.  We were blessed to qualify for Early Intervention which meant therapy came to our home 1x per week when Jarrett was 5 months old.  Our therapist, Mary Lou, was amazing! She was loving and patient, yet firm and pushed Jarrett to achieve beyond his dreams.  Early PT sessions started with stretching and bending his little legs and hips to help strengthen his muscles to prepare him to eventually stand.  Later therapy included legs braces called AFO's and an ugly, clunky contraption called a Stander.  Although they looked like torture devices and took up a ton od space in our itty bitty house, these pieces of very expensive medical equipment gave Jarrett the joy of mobility and strength. Surprisingly he tolerated everything with a smile.

This Jarrett around 10 months old in his stander.

 In home therapy lasted till Jarrett turned 3.  By that time Jarrett began walking with the use of a gait trainer.  We waited a long time for those first steps and they finally arrived June 26, 2012.  With lots of work and some bribery with M&M's he finally walked!!  This was the first of many TAKE THAT SPINA BIFIDA moments.

 In between therapies and adapting our lives to meet Jarett's needs we hit a few bumps in the proverbial road.  We had a shunt placed at 1 month old, a shunt revision a few months after the placement and quite a few ER visits.  We took everything in stride and Jarrett, well he handled I all with a smile as always.  He began living beyond limits from day one.

  Once Early Intervention ended, we pursued outpatient therapy at Children's Specialized Hospital.  It was less than 3 miles from our home and we met some amazing people who have now become life long friends.  Miss Katie was Jarrett's therapist and she was as amazing as Mary Lou.  Firm,  but fun and she adored Jarrett as much as he adored her.  The bond was instant.  Week after week for 2 years he continued to wow and amaze and as always, live beyond limits.

 Along this road we hit some more bumps.  Accessibility bumps when it came to our school district.  This part of the journey I call "advocacy."  I began studying, researching and attending advocacy trainings wherever I could.  The school district proposed Jarrett attend a school that had no handicap access. Actually out of 17 elementary schools, not one was ADA complaint.  I fought hard for 2 yeas to gain accessibility for my boy.  His needs mattered, not only for him, but for any child that would follow in the years to come.  I didn't do this for just him.  He was never able to attend preschool for more than 4-5 months because there always ended up being someplace within the school he could not fit with his walker.  The wrst was no batnroom could accommodate him.  After speaking publicly at school boad meetings to sending over 200 letters to congressman, assemblymen, the White House, the Governor's Office and multiple media outlets, someone listened.  Jeff Edelstein of The Trentonian listened and this happened.....

Ears started to open.  Hearts started to change.  Then more glitches.....

Finally after a long two year battle, 19 days after Kindergarten started without Jarrett, we won.  They modified a bathroom and even built a fully inclusive, ADA compliant playground.   This was truly going to eliminate barriers for Jarrett and help him achieve true life beyond limits.

Jarrett became strong, confident and boy could he move and quickly.  We soon discovered Special Olympics.  Jarrett attended the Young Athletes Festival where he climbed, rode a balance bike and even ran his first race.  He received his very first medal!

 

Jarrett then began playing adaptive soccer with Special Olympics.  He loved every second of it!!

Jarrett discovered his true love shortly after our news story became popular.  Our family was invited by the Trenton Thunder to come and enjoy a game with them.  Jarrett and Tyler both got to throw out a forst pitch, we met the team and just had a day that we could relax and enjoy our time together.  Jarrett had said since he went to his first Thunder game the previous summer that someday he would be on that field.  Well, his wish came true.  The Thunder have become family to us.

 

Nothing has ever stopped Jarrett achieve his dreams.  Just last fall he began playing baseball for Miracle League of Mercer County. He lives to play baseball.  The highlight of his time on the ball field was when the Trenton Thunder came to the Miracle field to play ball with all the kids.  Jarrett was able to play ball with a few players who he now calls his buddies, Dan Fiorito and Eric Jagielo.  Jarrett had so much fun.  Since that day we have attended so many Trenton Thunder games and every time the players come over to say hi, sign an autograph and high five their biggest fan.

One thing I wish I knew then that I know now is that Spina Bifida does not define Jarrett.  It is a part of who he is, but he defines himself.  His charisma, smile, energy and positive attitude defines so much more about Jarrett.  When someone asks what his limitations are, I like to say, none.  He lives beyond limits each and every day.  There is nothing he will not try and accomplish with his brave smile and cheeky grin.  I asked Jarrett the other night what makes him awesome and he said, "I am me Mommy.  I am awesome because I play baseball and like to have fun."



Psalm 139:14 "I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well."


 

Accessing Summer 2015

Summer came and summer is once again gone as fast as it arrived.  It is but a distant memory.  As a Mom, I have a love/hate relationship with summer.  First, I am a cold weather girl.  I live for chunky sweaters, anything pumpkin related and the ease it brings when you have a child  who wears KAFO leg braces.
 

Summer creates a lot of anxiety for me when it comes to the heat and the havoc it reaps on our family.  I become a freak watching the weather and the high temperatures that often complicates many days for us. 
 

Summer brings BBQ's, baseball games, swimming,  each days, outings and so much more.  All of which causes a lot of stress for me.  Many people don't know that I struggle with wearing a happy face.  I never want my kids to not attend a party or an event,  but sometines it is what happens.  Not everyone we are friends with or are family have homes that are handicap accessible.  Heck our home isn't even accessible, but Jarrett has learned how to maneuver in his environment and does so very, very well.
 

In his short 6 years he has accomplished more than we could have dreamed and that is due to the love, support and prayers of our friends, family and community.
 

This summer was challenging with the many warm days and so we invested in a small 3 foot deep pool.  Now getting jarrett in and out is quite a challenge. But once he is in he swims like fish.  Yes, this boy refused swimmies and taught himself to swim.  He also mastered swimming with swimming in his grandparents pool down in Delaware.  He used to be so afraid and wore a tube and swimmies and clung to me, but now Mr. Daredevil has mastered the water.  He has even been brave enough to finally go into the ocean at the beach. 

 

The beach is one place most would think accessibility would be an issue, but thankfully it has not been.  Belmar has been such a gift to me.  From the beach wheelchairs to the access ramps that lead pretty close to the ocean, they have really made is possible for people of all abilities  to enjoy a beach day.
 

This summer we also discovered the Dorbrook Recreation Sprayground in Colts Neck, NJ.  Jarrett used his wheelchair and had a ball.  He could do everything all the other kids could, but with a little wheelie flare.  We went back the second time to check out the playground. All I can say is WOW.  This playground was fully inclusive with rubberized flat surfaces to ramps that led to every area of the climbers.  

Summer has finally become a favorite time for us finally due to the many places we can go as a family.  Watching your kids play no matter what their capabilities and abilities are is such a joy.  We are certainly looking forward to next summer.

Everything is Coming Up Baseball

It has been so long since I have blogged because we are just busy, busy, busy.  The boys are getting so big and turning onto little men right before my eyes.  Jarrett has had a wonderful school year and is almost finished with kindergarten.   He is super excited to almost be a 1st grader.  We had our IEP meeting last week and it was a wonderful experience.  Total collaboration and it was truly everything I have prayed for an IEP meeting to be.

Tyler is doing great in 4th grade.  He now walks to and from school everyday on his own and has started taking on some responsibilities at home.  One of those responsibilities is his bearded dragon named Draco.  He helps feed her and clean her tank and he has even mastered getting her in and out of the tank so she can sit on his shoulder.  I have become quite fond of Draco and yes Mommy spoils her rotten.

Our weekends and some Wednesday evenings are filled with baseball.  Miracle League baseball.   Jarrett plays for the Boston Red Sox and is loving every second of playing baseball.  This league is so amazing and it really is what baseball should be....fun and laughter and sportsmanship.  Our family is incrinedibly thankful for Jarrett's buddy/Angel in the Outfield named Tim.  Jarrett's face lights up when he sees Tim and the both of them have a great relationship.  They play catch, switch hats, joke and just have so much fun.  It is a joy to watch this young man with Jarrett and see the love and kindness that exudes from their interactions .  



Jarrett and Tim, his Miracle League buddy.  Their bond is easy to see.

Just having fun.

Jarrett and Tim, his buddy.

            

JR Littlestuff a.k.a. The J Train, a.k.a Superman, a.k.a. The J Bird at bat for Miracle League

Just yesterday The Trenton Thunder stopped by Miracle League to play ball with the kids.  It was an awesome day and everyone had so much fun.  Jarrett has always said to me, " Mommy someday I am going to play ball with The Trenton Funder.  I am serious.  I can do it and I will practice really hard."  Yesterday his little heart was bursting with excitement because his dream came true.  He had so much fun being pitched to by Dan Fiorito and fielding the ball with Eric Jagielo.  Both guys were super nice and had great chemistry with all the players.  Jarrett has a blast!

It's Boomer!!!

Chatting Eric's ear off in the field.

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Just playing ball with Eric Jagielo of The Trenton Thunder. 

              JR Littlestuff at bat.  He hit a homerun!!!

Tyler getting an autograph fron Dan Fiorito.

Miracle League of Mercer County and The Trenton Thunder

Jarrett with Dan Fiorito of The Trenton ThunderToday we had tickets to an afternoon game at Arm and Hammer park thanks to Tyler's school fundraiser.  Mommy had tweeted Dan and Eric earlier to let them know Jarrett was coming to the game and Dan responded and told us where to go so he could say hi to Jarrett.  We walked over the the first base line and once Eric saw Jarrett he began chanting Jarrett's name.  He ran over and high fived and fist bumped the little man.  He even got him a ball from the field and signed it for him.  Dan also came over and high fived Jarrett.  They chatted for a few minutes and Jarrett told Dan to have a great game.  The Thunder won 2-0 and we had a fantastic day at the ball park. 

One happy kid!!

Jarrett and Eric Jagielo.  He is such a wonderful guy.

Just chatting.

TJ getting an autograph from Eric.

Getting an autograph from Dan Fiorito and a few others.

My gorgeous boys.  I love time with my family.  So blessed.