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!)