Monday, November 18, 2013

It’s A Bloody Battle Every Single Day... (SLIGHTLY GRAPHIC)

Around these parts we go to war every single night. There are always casualties but many victories. Rarely do I post pictures of what we endure and these are in no way close to what many other children with EB go through - but we are still a small percentage of the population that before we kiss our children good night we must act as doctors, nurses, wound care specialist and nurturer before they slumber off to dreamland...and yet we always manage to find the comfort in one another every single day that is so important in our lives. Without each other's warmth we will wither away like grass and fade away like flowers who have no sunshine. So please make sure you give your children some extra love tonight! Even if they're already asleep!

Sometimes we have a night where we just pop one blister, slather on the ointments, wrap it up and keep going. Then there are nights like tonight. Bianca’s most delicate spots are the ones in the back of her thighs. She constantly breaks them down and heals them back up. When I think we’ve hit a turning point those two stubborn spots bubble up, the skin shifts and the cycle begins all over again. What is the most excruciating part is that there are times where these areas heal in a way where ONE SPOT decides to bleed out profusely and we can’t stop it. We can only try to move fast and put MediHoney, Silvadine or Neosporin along with the primary wound care dressing and wrap it up. The down part to this – by the time you wrap up the area blood has managed to seep right through the nicely clean bandages. By placing a new one on top we can say goodnight, pray that it will do some healing and redress it in the morning before heading out to a full day at school.

Is it unbelievable to say that throughout all this our beautiful daughter smiles and continues to go about her night as if nothing ever happened - tucking the dogs to bed, kissing us good night and even saying “sweet dreams”. How can I not appreciate life and have gratitude in all we do every single minute? She is proof enough that in this world we must continue to push forward without a second thought of looking back. We’ve been blessed so many times over by her presence – there is nothing I would do differently in my life if ever given the chance…NOTHING AT ALL!

The Remnants Of Today's Battle

The Victory Smile From The Battle Won Tonight
(Bee w/her new iPad from
Debra's Smile Fund - October!)
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