Thursday, November 11, 2010

Floating Faith

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Noah Floating
Noah loving the water

Noah in his winter gear

Noah smiling because I told him Grandma would love it!

Noah has his warm water therapy session today. I bundled him up to brave the cold and snow and off we went. Noah hates hats, but obliged me even allowing me to to cover his hands with mittens. I was even able to get his feet into some Robeez booties I had bought last season. They are almost too small, but they are all I have. Maybe Santa will be able to bring him another pair in the right size, since he does best in soft soled shoes.

The last two weeks Noah has done some amazing things in water therapy. Things I never dreamed he'd ever do. We've finally gotten to a point where we can cover his ears and submerge his head in water and hold him by his shoulders in water on his back. His sensory issues never allowed this previously. We still have a long way to go, but to see him so comfortable in the water makes my heart skip with this indescribable joy, the kind of joy that fuels that deep hope that will reside forever inside a special part of my soul.

There are so many children that I read about, it's so hard not to get attached to them all. They are all so very precious and special in their own way. I've read about Bowen, a little boy fighting a heart condition since the day of his birth. His father happens to be the lead singer of a Christian group called Sanctus Real, but no matter how close you may or may not be to God he can bestow upon you a heavy cross at any time without warning. This is an excerpt from Bowen's blog at:

"I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that you cannot possibly carry it.’
My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.
‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”
"Wrestling With and Angel"- by Greg Lucas

It is true, our burden is so heavy that we can't possibly carry it alone. Yet I'd like to think that not only is God there for all of us, but so are all of you that continue to care so deeply about Noah and our family. You offer us prayers, love and understanding. We've been broken down to nothing, we have nothing. We've slowly been losing all financial security we ever built, years of planning and dreaming. It's all coming down like a house of cards. One life altering event is all it took. And life as we know it has forever been changed. There's no way anyone can really keep up with everything when therapy costs and equipment are like having a second mortgage. You can't do without them, because you see your child making progress. Yet you realize you still have to feed the dogs, yourselves, pay the utilities, phone, trash, water, mortgages, health insurance bills, car insurance and the like. Most families are forced to have one that stays home with the special needs child. In this case it was me and continues to be. And none of it is Noah's fault. We never look at him and say you are the root of where it all started. For in our hearts we are willing to sacrifice anything and everything to help him. There are things that are just so unexpected in life. We take our health for granted, our jobs that we think are so secure - we give ourselves a false sense of security. When really the rug can be yanked out from underneath any of us at any time for any reason. We build our egos up to think we're untouchable, but we are so fragile and so easy to take down.

All we can do is turn it over to God. What else is there to do? Will he help us? I don't know. There are lot of us that need help, I have no idea where we are on his list. But I will continue to pray that above all else he helps Noah. I'd give my last breath to help him.