Tag Archives: Chiari Malformation

For Love of the Game

Opening day for another great season of baseball.

As it does each year, it brings with it the reminders of why we love the game…
The National Anthem played while the boys stand there with their hats held across their hearts, the smell of burgers and popcorn fill the air, volunteers everywhere, little siblings running up and down the bleachers-laughing, screaming, crying because they just dropped their ice cream-parents cheering for each and every kid on the team as if they were their own.

Yes, a sense of family is born each season- and with that, means teaching the boys to be humble for days that end with a win and dust off the clay when losses come their way, learn from them and keep on, keeping on.  I venture to say this is true in most aspects of our lives.

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What made today really awesome not only for my son but for all the players and parents was the umpire.

Charles is unlike any other. We have had the pleasure of getting to know him for a few seasons now. An Army veteran and former player himself-once upon a time was recruited and played for a Minor league team with dreams of making it big before repeated injuries set him on a slightly different path. Charles has a true passion for the game, and brings with him a genuine care and concern for each and every player. Often taking time to offer words of encouragement, give specific pointers, strutting his goofy dance moves on the field, always calling a fair game and keeping the kids and parents laughing with his amazing sense of humor and love of life.

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He serves as a wonderful reminder that regardless of the obstacles we must overcome and where we work, we can do it with passion, to the best of our ability and  seize   every opportunity to make meaningful connections with others.

I thank him for his service to our country and to the kids in our community especially #42.

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I Believe

 

I Believe in miracles, I’ve had a few you see

the gifted hands of doctors who’ve saved my son and me

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I Believe in giving as a means to help and heal

the cold, the tired, the hungry with a warm and hearty meal

I Believe in the power of story

that lifts us from our dark and dreary night

so that we may see the glory of the early morning light

I Believe and support the soldier some who’ve left this earth too soon,

for they protect my children sleeping peacefully in their room

I Believe in freedoms that allow us to bow our heads and pray,

however we choose to worship on any given day

I Believe in forgiveness for those who beg and sin

as most often we know the enemy is within

I Believe in getting lost along our nature’s path

so that we may gain the wisdom that keeps us from the wrath

I Believe in a love that is patient, kind and true

and please know my Dear, I will always Believe in You.

 

 

Much Appreciated

Thank you for all of the kind, caring messages and offers to help with regard to my son’s health issues.  It does not go unnoticed and is very much appreciated.  I have gotten a bit behind with posting and responding to comments so my apologies to those who haven’t received a response back yet.

 

It has been a whirlwind of doctors visits, tests, long drives etc…    We remain hopeful that he is on an upswing to recovery.  

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Give presence to those you love and care about. 

 

How the Mentally Strong Handle Hard Times

With recent MRI results coming back on my son, we were disappointed to say the least.  It takes a few days to process the possibility of him having brain surgery for the second time.  What he and I  won’t do however, is sit around and feel sorry for ourselves and do nothing.  We have come to understand that there are certain characteristics that most or all mentally strong people utilize when hard times fall their way.

 1.  They focus on what they can control -even if it’s just their attitude in approaching a difficult situation

 2. They create a course of action-they figure out what the possible solutions are and get to work on what they need to do. They keep moving!

 3.  They practice gratitude-morning|noon|night-it’s tough to see the rainbow through the clouds so they look closer at the small things around them that they are grateful for such as taking a walk with their dog, a call from a distant friend.

4.   They evaluate their priorities-while experiencing loss and hardships, one must always remember as Stephen Covey calls them, the big rocksbig-rocks or what is most important in their lives; it may be their health, family, job etc… take care of the big rocks.

5.  They draw on their inner strength-they remain committed to having a positive outlook and staying the course til the storm calms no matter how long this may take.

It is often in the worst of times that we discover the scars we have endured are  our strengths| the miles we’ve run are our determination to never quit| the difficult situations we face are opportunities to find the positives| and walking through our fears is how we develop the courage to carry on~

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How Big is your Brave?

“Mom, how big is your brave?”

These were the only words my ten year old son muttered to me on the long drive home from his neurology appointment on April 20th in 2015.  As my heart sank into the pit of my stomach, and with a crackling voice, I responded, “As big as you need it to be, Honey.” He turned his head back towards the passenger window and closed his eyes. 

After almost a year of numbness, tingling in arms and hands, multiple syncope episodes and other symptoms, ER visits, a wrong diagnosis, countless medical tests, and appointments,  he was finally diagnosed with a rare brain disorder called Chiari Malformation(and Syringomyelia); a condition that causes part of the brain to protrude into the spinal canal causing csf blockage, nerve damage and paralysis if left untreated.

 How could this be?  My son!  The sweet, kind-hearted, fun-loving gentle soul.  After talking with the neurologist about what was going on and options for treating it, my son finally forced the bottom line… “So what you are saying is that I need to have brain surgery, right?”  “Yes, that’s right” replied the doctor.

How does a parent prepare their child for this?  How do they steel themselves to such a medical condition?

The first week after we discovered what was the root of his medical issues, I was an emotional wreck.  6-the number of hours of sleep I got that week while my happy-go-lucky boy carried on with his days and normal curious nature; his nights filled with baseball practice, homework,  and games.  At the end of that week of extensive internet research, reading, multiple phone calls and medical opinions; I finally decided to check my emotions at the door and put on my Super Mommy cape and BE what my son needed me to be; strong, positive, and supportive.

Two nights before his surgery as I tucked him into bed and with tears in his eyes, he quietly asked me, “Mom, am I going to die?”  The only thing I could manage to get out of my mouth was, “No, and no matter what, I will be right there  every step of the way.”

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Morning of surgery

A month and a half after his initial diagnosis, my courageous son was wheeled into brain surgery.  On his second day post-op, the physical therapists were astounded at how motivated he was to get up and moving about the halls.  They obviously didn’t know my son as he rarely stops moving!

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Not a great day but still got a thumbs up!

With months of physical therapy, side effects of necessary medication, heavy restrictions on physical activities and getting back to “normal” life, I was reminded of just how resilient kids  are.  While he continues to recover and understands that life has to be lived a  bit different than before,  my hope is that he will embrace his scars as evidence of his strength, courage and inspiration for so many.

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When starting back to school now as a middle schooler, he was a bit apprehensive as to how he   would be received by the other kids when they saw his scar.  Upon entering his first period class, the teacher prompted the students with the question, “So what did you do this summer?”  As any courageous lion would, he quickly stormed in and replied “I had brain surgery!”  I’m pretty confident that topped all.

“Life doesn’t happen to us, it happens for us”

Though the ride on this journey has been a bumpy one for sure, we are beyond grateful for the gifted hands of his amazing neurosurgeon and so many extraordinary strangers who also live our story and to whom we now call friends.

When life taps you on the shoulder in those crucial moments – be sure to pay attention and ask yourself, “Did I allow this experience to  make me bitter or use it to make me better?” 

A Blessed Mom