Thursday, May 7, 2015

May 14 Apraxia Awareness Day

Ok first I am asking you to bear with me as I try not to cry.  After all this is my baby we are talking about!

Lucas is a beautiful, sweet, mischievous, extremely active little boy who loves the color pink and bad guys!  It is funny that I want to say "words cannot describe" because that is exactly what his Apraxia is all about, finding his words...his voice!  If you have ever had a child you know that shortly after their first birthday you begin looking forward to their babbling changing into Mama, Dada, and Baba.  It is one of those miraculous and sweet memories families share as they bet on which will be the first word.  Lucas did not babble.  He coo'd but those sweet constants never came through.  Lucas would also scream all day at me.  By 18 months I was worried and by 21 months I called my doctor who had me call Early Intervention Services to have him evaluated.  By 23 months old he began services and still had no words.  Lucas qualified for speech and developmental services.  Those beautiful women became my coaches.  

Fast forward to today!  Lucas is 5 years old!  He fights past his Apraxia to make sure he is understood.  If you don't understand him the first, second or third time he will use a variety of resources to help him.  He uses basic signs, gestures, or contextual clues.  My boy has a Warriors Spirit!  Giving Lucas his voice is a family effort.  Before Lucas had words we taught him sign language.  Gabriel would look through the book to learn new signs to teach to all of us.  He is an awesome big brother!  I remember the days that Leo and I would listen to Lucas, quietly counting out how many words he was able to string together...well, approximations of words but we didn't care because we were hearing our little boy talk!  

Lucas even loves hearing himself talk.  If you follow me on facebook you probably have seen one of the video's I post.  These video's have served to remind me just how far he has come.  Battling Apraxia means you aim for an inch not a mile.  Sometimes you can progress two inches just to fall back three.  That is when the video's come in handy.  

Apraxia Awareness is a way of life for us.  Leo and I don't excuse Lucas' speech to everyone by explaining that he has a speech disorder called Apraxia.  Why would we?  We are so proud of his accomplishments!  When we go out to eat Lucas will order his own drink, if he is not understood we simply tell the waiter what he wants.  We never discourage Lucas' speech attempts.  

May 14th is Apraxia Awareness Day.  

Tuesday, May 5, 2015

Spring time flare day #11

The long Winter is over and we should be enjoying this beautiful Spring.  I should, but a long flare has settled in as if it is taking a Winters Nap.  During these long flares it is easy to 'get down' and be hard on yourself.  After all no one likes walking in to a kitchen with dishes piled on each other and doing an emergency load of laundry because the kids are out of underwear!  Reading newsfeeds of friends planning activities that you simply cannot do or being able to walk your child down the block to play at the park can make you feel depressed.  Most people get cabin fever if they spend more than two days cooped up inside without being able to do anything yet I have to be used to days piled on days that turn into weeks!  I honestly feel like a child who wants to stomp her foot and scream "It's not fair!"

I am going to make a confession.  This past Winter was a hard season on my leg.  Harder than normal.  We all know it was the coldest Winter, ever!  So many people kept me in their thoughts and prayers because they know how the cold affects my disease.  I am so grateful for their prayers!  Still, it looks like 2015 is going to be a hard year.  It happens.  I have had RSD/CRPS for nearly 20 years and I have learned that there are bad years and good years and years that completely suck.

Years of experience have taught me how to prepare for these hard times.  Allowing myself time to wallow in self pity but never live in that deep abyss.  Laughing with my family and filling my free time with my favorite hobbies.  I have my tv shows and books.  I spend time on facebook and games on the computer.  I text Leo a dozen times a day, sometimes it is as trivial as a simple "I love you!" just so I can stay connected.  I text or email my bestie anywhere between a few times a week to several times.  I comment on facebook posts.  I do whatever I can to stay connected so these walls won't close in on me.  My days revolve around my children.  I hate that during flares I have to parent them while I am stuck in my LazyBoy recliner or worse yet bedside.  At least I do it!  At the very least I give them the feeling that I am always "there" for them.  I am proud how I parent them.

If this is going to be one of those harder years I know I will survive it.  A hard year won't beat me down.  I have too much experience to allow it.  I have Leo in my corner.  The man is a blessing.  Today he bought me white roses.  Last weekend my parents came over and Mom helped me with the kitchen and groceries.  Unfortunately I had to miss out on a friends birthday celebration and kids birthday party.  Life would be perfect if everything could be done at my house or locally to me but that is not real life.

If this is going to be one of those harder years I do have a favor to ask.  While you are living your busy and crazy life take some time to appreciate your own physical health.  At the end of a day that leaves you particularly exhausted, instead of complaining that you are tired take time to evaluate what you have accomplished that day.  Don't jump over the basics like getting the kids dressed or giving them baths or driving somewhere.  Truly evaluate your accomplishment and give thanks to God that you had the ability to do it all.  If you are training for a marathon or one of those fun obstacles like Mud Run be thankful that you are able to do it.  What I really wish is that you be thoughtful and thankful for the healthful life you have to live.  I don't care that I might have a hard year ahead of me.  This is my life.  Every night when I put Lucas to bed we say his night time prayers and give thanks for the day and people in our lives.  It is so beautiful to listen to him being thankful for his life, yes he fights for his speech but that doesn't matter.  He has a beautiful life to be thankful for!  Just as I have a beautiful life to be thankful for despite my health.  Please be appreciative of your own life!