Sunday, October 30, 2011

Bee Inspired: Strength in Pain

Somehow in my late nights of Caringbridge page and blog hopping, I have stumbled upon some special kids that I've continued to follow. Many of those families I remain in constant touch with via Facebook, some of whom have become close friends. For some reason, right now, things are not going so well for most of them... so horribly, in fact, that a few are spending their last days with their families, or already have. I always have a difficult time with this. I have a hard time when I hear of anyone passing from this life on Earth, but when it's a child that has been suffering it just seems so very unfair. 

I find myself wondering if when those final days are approaching for my own 'lil man, if I'll know that they are his final days, and if I'll be as strong as these parents seem to be. Such incredible strength and fearlessness. I'm afraid I will crumble in to a million pieces...
I have this book on my bookshelf, and tonight it caught my eye. I've blogged about it before, and I now own it as opposed to just checking it out from the library...I loved it that much! It's called Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill and it's WONDERFUL. I highly encourage anyone who has an extra special child in their life, to read it and keep it close to heart.
This is the page I read tonight, and I think it was picked for me in some way or another:
"He hadn't known you couldn't enter a child's helplessness with all the skills of adulthood, and make him whole, but had to stand off with the knowledge adulthood brings, helpless, and watch the child suffer and hope that your hopes for him touched another source and returned to him as strength from the Lord." ~Larry Woiwode
Dear God, Give me the strength to be present at my child's pain. Help me to have faith in his competence. Help me to be honest with him. Help me to convey the confidence I have in him. Spare me the necessity of using force. Keep me from denying or minimizing what he is experiencing. Don't let me make my pain more important than his. Don't let me abandon him in any way because of my own fear and weakness. Don't let me be overpowered by my frustration and feelings of helplessness. Remind me that pain is survivable. Remind me that he knows I would not permit this if it were not necessary. Help me bear my suffering with strength, dignity, and honesty and so provide an example that will calm and reassure him. Remind me that my touch, my smell, my presence are all to him. Help me to stay here beside him. Amen.
May sound a bit strange, almost as if a parent would consider abandoning the situation. I know first hand, that it does overwhelm you at times. The fights to advocate, the pressure of the situation, the extra patience involved... Sometimes I feel as if perhaps I am in denial of the inevitable, but truly I know better.... know that it is just easier to stay optimistic, and enjoy every second. 

Sometimes, however, I feel like I am setting myself up for more pain, being so close and loving so much, but what other way is there? Sometimes I feel like I could run away from it all, but really I wouldn't or couldn't even if I tried! It takes a lot of strength...
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along,' You must do the thing you think you cannot do." 
~Eleanor Roosevelt

Please keep these children that are fighting, close to your heart and in your prayers...

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