Tuesday, July 5, 2011

The good, the bad, & the ugly!

Last week I completed the last classes for my second Master’s degree. Now I am preparing myself for what’s to come. I have avoided blog updates only because I have been extremely busy and by the time I make myself slow down it is because I am having a melt down. I don’t want all of my blog entries to seem negative and since I have been in a very dark place emotionally I have avoided entries all together. The truth is this is life, ups, downs, the good, the bad, and the ugly.

David has grown so much in the last few years and for that I am very grateful but his growth has forced me to face some scary realities, like how I will care for him and what happens if we loose our services and resources.

The Division of Developmental Disabilities (DDD) is currently trying to reduce his services hours (in half). I am trying to be proactive in this matter but I am getting conflicting information which is making it difficult. I am not trying to be challenging but the truth is I am being forced to face some issues concerning David’s care that are very scary for me. He is already too heavy for me to lift alone, and having taken care of a “baby” for 14 years has been extremely challenging. I can not predict his need for brain surgeries, his seizures, or his respiratory issues. Doctors do not know how much bigger he will grow physically and don’t expect him to develop much more cognitively. I am doing everything in my power to provide David with the life he deserves but we desperately need the services that DDD is trying to take away from us.

I am David’s arms, his legs, his eyes, his voice, and his translator. It is my job as his mother to advocate for him but this is no easy task when I am working with a system much stronger and greater than myself. A system that is supposed to be on our team. I am tired, weary, and don’t feel like I have any fight left in me, but at this point not fighting is not an option. If David looses his services it is very possible caring for him on my own will become too difficult.

I am a strong, independent, educated woman, but I am still human and fear is sinking in!

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