Sharing stories of fear, frustration, hope and acceptance

Archive for October, 2016

Dare to Believe

 Adam and his brother after his brother competes in a swim meet.   
Adam’s energy level is usually low for multiple medical and pharmaceutical reason. He has alert days now and again but some days (lately most days) it’s a battle for him to just sit with out getting tired. His eyelids are barely open and that’s him, awake. I’ve been noticing his alertness decreasing. He goes to Physical Therapy, Vision Therapy and Teacher Time and lately each therapist  has noticed a gradual decline. So being the mom I am I have taken him to all his doctors and pointed it out perhaps nearly yelled it out. Most don’t listen. In fact none do. I’ve recently changed all but one of Adam’s doctors, now hopefully we stand a better chance being listened to, maybe these next appointments will lead to answers. 

In the mean time the subject of a “Talker” has come up a few times. It’s essentially an eye gaze device that allows the person to look at a picture icon and the device will say the word. I was also given the contact info of a person that could evaluate Adam and let us know if he could meet the criteria to qualify for this device. Immediately my heart was torn. Memories of Adam’s old communication abilities came flooding back, Adam is Deaf and he used to sign (before his brain surgeries) so you’d think the thought of my son once again communicating would be a good thing but this time it wasn’t. 

Immediately my heart  ached and wispered, “please, not again, I just can’t take the thought of yet another evaluation telling me what he can’t do, Please not again, another wonderful piece of equipment sitting waiting for him to enjoy, Please don’t hope so big.” It nearly whimpered.

Every minute of everyday is a struggle for Adam to do the very minimum like keep his body temperature up, even lifting his eyelids is an exercise, breathing or eating is even challenging. So the thought of someone coming to our home to “evaluate” for the possibility of the use of a communication device is overwhelming, it makes me feel frustrated and hurt and exhausted  that I can’t help him with his energy levels. It makes me angry toward doctors because they SIMPLY DO NOT LISTEN. I feel angry with the people who say no he won’t ever… Or hurt towards loved ones who over look Adam or don’t give him attention or time just because he can’t “communicate”. It makes me wonder and dream how different things could be if he could tell me “happy” or “hurt” or “play” or “potty”. Than I ask myself well how can you give up? How in the world can you give up? NO ONE ELSE will be there for him if you give in, no one else will DARE TO BELIEVE.

So I ASK MYSELF the question: DO I DARE? Do I dare to let my heart break yet another way if this idea doesn’t work out? OR Do I dare to believe that some how Adam can stand a chance (a long shot chance) at communication once again. Some how I HAVE TO get over the negative and dig up the strength, some how I have to imagine against all the odds,  and I HAVE TO DARE TO BELIEVE.  Do you dare?

  
 

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Days Turned into Years and than his was 7!

 It is unbelievable that Adam is 7 years old. They say time flies when you’re having fun. That’s Mia his dog.  

Sometimes life can get so stressful that taking a little breather is NOT an option. It just needs to be done.

This photo is at Santa Monica Pier, Ca after yet another out of town appointment. This time I squeezed what fun I could in.

  

This is Adam when he’s bright eyed and alert. Days like this are so much fun. He is just hanging with his mom and his snake 🙂

  Adam visits the Aquarium with his brother.  

Adams’s first bus ride.  Queen Mary, Frankie and Adam 2016  At home relaxing with Nana Mary, another bright and alert day. These days are always memorable and fun.  

   Adam celebrates turning 7 with his biggest fans, Nana Angie, Nana Mary and Nina Debbie!

   Sometimes in life all you need is LOVE, and Adam has plenty of that!
  

Adam and GREAT Grandpa, both like to recline and watch the crazy family fun.  
  

Just a good looking boy and his best nurse enjoying a Saturday afternoon.  

Our family favorite movie Dory. He watched 75% of it. (That’s a lot for him).
    

Bubbles are always his favorite.