Wednesday, April 13, 2016

Mark's Fight: I Can and I Will. Watch Me!

This is written in the spirit of solidarity.  

This is to all the families that struggle with the 

beast we all know as APRAXIA. 

Our son’s story sounds just like many of the other 

stories you will read regarding Apraxia. One difference might be that Mark has Global 

Apraxia.  Apraxia on steroids! I often say our journey has looked a lot like an EKG.  

There have been lots of highs and lows. We’ve had many days that this disorder has 

shaken us to our core.  Some of our lows were how we were constantly wondering what 

the future would look like for our son.  Continually questioning what the best approach to 

treatment was.  Countless days when we felt we weren’t doing things right or that we 

were not doing enough.  

We struggled with the mountains of bills, trying to schedule the 

countless appointments, the running from one appointment to another, fighting with 

insurance companies, attending IEP’s where we fought for his right to an appropriate 

education, and all the while juggling the needs of our other 3 children. 

However, the lows 

that impacted us the most were when we saw Mark struggle beyond belief to say the 

simplest of sounds and seeing him feel defeated.  Those were the times that hurt the most 

and it literally crushed us as parents.  

I am happy to say that although it has taken us quite awhile to get here, we are 

at peace with our son’s diagnosis.  The highs we experience with Mark on his 

accomplishments are received with pure elation.  The “look” my husband and I give to 

each other when he achieves what seems to be the impossible has got to be the most 

beautiful thing ever.  You all know what I am talking about…the nanosecond where your 

eyes meet your spouses and without words say, “He’s perfect and everything is going to 

be alright”. Pure bliss!!

Global Apraxia is a beast!  It has presented our entire family with 

a lot of heartbreak and worry.  It has been without a doubt a rough journey. But “The 

Beast” has also been a catalyst that brought our family to the place we are today.  We 

have learned that we can rely on each other.  We have learned to LEAN IN and really 

tackle the struggles of Apraxia TOGETHER.  We relish in the accomplishments of 

ordinary tasks like CVC words, catching a ball, riding a 2-wheeled bike, and whistling! 

He is even on a basketball team!

  We have been blessed with so much love and support 

from our family and friends and all along the way we have met so many wonderful 

people and organizations. (Our favorite organization being CASANA!)