Tuesday, May 14, 2013

Apraxia Awareness Day




Today is the first (I think) Apraxia Awareness Day.  And, while I know our blog has been a little Jamesie-heavy lately with his birthday and new speech news, indulge me once more as I write a bit about Apraxia.  Tonight we will go to a first-ever Charleston area apraxia event at a local restaurant and I'm really looking forward to meeting other families and kids in our same situation.  A year ago I had never heard the word apraxia and now I feel like I have to limit our exposure to everything-apraxia so we aren't consumed by it.  I want to help Jamesie and do all we can for him, but I don't want our lives (or his) to be defined by his IEP or how many words he strung together in a sentence today.  I want him to be defined by his heart and his soul and his decisions and the way he is gentle to his sister and pesters his brother and his beautiful softness.  But, the reality is that we do work hard every day and we don't know what to expect in the future.  So, in honor of Jamesie and his hard work and our support team developed over the last year, I have put together a list of hopes for Jamesie in the coming years--some have to do with apraxia and some don't.  For Jamesie, I hope:

-that you can tell us what you want for your next birthday;
-that you can tell kids you meet on the playground your name;
-that you will go to kindergarten and make new friends;
-that your teachers will love you and listen to you with patience;
-that your brother will always be your best friend and will always stick up for you;
-that you will always stick up for your sister;
-that you and your brother will stay up way too late talking;
-that I can take you (for once) to the doctor without having you earn a time out in front of our pediatrician!;
-that you will play soccer and call to your teammates for a pass;
-that you will choose a sport that you like;
-that you will read normally;
-that you will like math;
-that you will ask someone to prom;
-that you will go to college and learn something that makes you want to keep learning;
-that you will be the quiet, observant, hilarious type;
-that you will meet a girl who listens to you because she knows what you have to say is important;
-that you will meet a girl who loves your beautiful, fat lips;
-that you can tell your children about how hard you worked to learn how to talk when they need encouragement.

Really, this list is just a number of selfish wishes I want for my boy.  What I really hope and pray for more than anything else is that Jamesie is the person God made him to be and does what God wants him to do with his life.  I pray that he knows God well enough to ask him what that is.

We have all worked so hard this past year, but Jamesie especially.  It is unbelievable to watch a 2 (now 3) year old develop a motivated work ethic.  I know it's trite, but we are so proud of him.  The communication skills he has gained in the last year have enabled his mischievous, stubborn, funny personality to emerge and despite the increase in discipline, we have loved getting to know him better.  We love you sweet, sweet boy....happy Apraxia Awareness Day everyone!



who knows, maybe Jamesie will become the first American Pope....quiet and thoughtful :)