Thursday, December 18, 2014

a response

I wrote this in response to someone posting about coming to terms with their child making very little progress after a lifetime of therapies etc

There comes a point as hard as it is that you find a sort of peace in that this is the way things are and are going to be for the foreseeable future.and maybe forever. The reality for some kids is that it doesn't matter how much you devote every waking hour to therapies, they may still not walk, talk etc. They will not grieve these things. That is your burden. What they need is to feel the never-ending, ferocious love of a family that knows that they are perfect just as they are today. We want so much for our kids but what we want most especially is for them to be free of pain and suffering. Unfortunately some are dealt many challenges that would drop the majority of adults to their knees. It becomes our job then to help them live a quality filled life in spite of those challenges to rise above whenever possible and to accept and adapt to limitations. In regards to the seizures if you are tapped out in their treatment it becomes a matter of how can you minimize their impact and still help him live his best life. For us seizures are a daily reality as well. My kids have seizures big, small and in between then carry on so we must too. We have to meet our kids where they are, provide them with every opportunity to grow and develop but within the boundaries of maintaining a healthy lifestyle for the whole family. 

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