Fear Not

As I walked home from the baseball fields with Eli and Ella I walked a few steps ahead of them…just far enough to hide the tears that seemed to silently fall. Somehow they know when it is a bad moment because I get an extra hug unexpectedly from Eli or Ella says “I love you mom” Tonight though, I made sure they did not see my sadness as I knew it ran deep and I just needed to let it out. When you look at me you might not see the pain that lies so deep…a pain that I never imagined I would ever feel. Yet somehow I feel it, acknowledge it, learn from it and move on. It seems to be a daily struggle.

Everyone is so wonderful with him…the coaches, parents, kids and his friends…yes I feel very lucky. Eli seems to be a bit of a celebrity at home and when he walks to the snack bar most people know who he is. This weekend we walked up to the counter and a young girl had a Warrior shirt on…WOW…that is my baby boy and girl…on a shirt…hopefully changing lives by reminding people to enjoy every day and don’t take anything for granted. Life can AND DOES change in an instant.

What people don’t see are the struggles…the struggles that are a part of his daily life. For years I have watched Eli work so hard at so many things and yet never meet his own expectations. Tonight after striking out three times, I listened to him crying that he “sucks so bad”. The pain in his eyes you can see as he wonders if he will ever be better. He believes he will never be good enough and I feel his sadness. This is just part of my pain. How do I explain how this disease has just robbed him of things that seem to come so simple to so many? I don’t! I tell him that he is my hero and that he is NOT a quitter. I have seen more motivational videos on you tube in the last two years and I wish it was as easy as they seem to motivate someone with special needs. Maybe when he is older and can really understand …I can only hope.

For years I have watched him struggle. Putting on his socks…something that seems so simple was always so challenging to Eli. Riding a bike, hopping in a sac, keeping up with his brothers, climbing a tree, playing on the jungle gym, keeping up with boys his age..the list goes on. Normal things that seem so easy to most were NEVER easy for him and yet I barely noticed. I just thought he had to work harder and that he did. Maybe if I would have noticed sooner how bad things really were…maybe there would have been a diagnosis earlier. This is probably not true but you (as a parent) have to put the feelings somewhere and putting them on me takes my sadness off of him. God I wish I could take it all away!

I have tried for 20 months now to focus on the good…the awesome people we have met … the love that has been shown to thee precious kids…the idea that I believe good will come from this and most importantly getting them BOTH treated in Milan. It has been quite the journey so far and it is really just the beginning. A balance has to be found …the sadness can’t stay every time I feel sorrow at his life being so challenging. This is his journey and I can only do so much. I will try to find things that will lift him up, boost his confidence and help him feel good about himself…and most importantly I will be his biggest fan on his journey through life.

~ by Rebecca on May 22, 2014.

Posted in Diagnosed
Tags: Baseball, Eliandellasprayerwarriors, friends, life, MLD, sadness, sorrow