We will be attending the next meeting concerning my granddaughter's care. And I am happy to report that this will be a multi-agency joint effort, including us, to discuss current care and what else needs and/or can be done for her. The person facilitating the meeting is the one who is most actively involved in her therapy and not only does she have a great rapport with him, we also have trust in him and in knowing that he has the same goals and desires as we do concerning her ongoing care.
This started out with feelings of helplessness, anger, and bitterness over what we saw as a failed system. There are still bad feelings over how parts of our health care system failed her, but we are learning that it wasn't any one agency, health care policy, or political issue to blame. It was a cumulative series of failures, both small and large, including failures of our own. They say that hindsight is 20/20 and the more I learn and see, the more I realize that had we been more proactive early on, had we taken the measures that we are taking now, had we done lots of things differently, much of what is happening now would have happened months ago.
Gone is the blaming. The guilt may never fully go away. But the focus is not on the past - but rather on going forward from here. And we are going forward with renewed hope and support. Regardless of what the future brings, I feel secure in knowing that we are not alone. We have a team of professionals working with us, helping not just my granddaughter but us as well, so that we can best help her. Even if one on her team leaves, as they sometimes do for various reasons, and is replaced with someone less effective - we know that we have control in having that rectified. Our team has empowered us with the reassurance that we do have a say in everything. In fact, we are the overseers of her team.
Even better, her professional team "captain" is striving to help her find her voice in her care because she has the one this is all about. Her voice is the most important and carries the most weight. She is still learning how to use her voice in an effective manner. It isn't always easy, but she is a pretty tough kid and we all have faith in her. She has shown so much more progress in just a few weeks, than ever before. She may struggle for a long time with trusting those who's job it is to look after her best interests, but hopefully that day will eventually come when she can believe that she has a team of people who will pull her up out of any cracks she might ever again start to slip into.
I am not going to go into any details about her therapy, or what it entails. Trust needs to be a two-way street. We are trusting this team and we must be trusted by them. And now that our struggles as parent/guardian are at an end, this story is now her's to tell, and her's only. I will continue to provide updates on how we, as her guardians, are faring - what challenges, victories, struggles, and lessons we encounter. But only so that we can help other families who might be struggling with the same, or similar issues. And I will definitely be sharing any and all resources I find, in any and all areas. That continues to be our goal - to become a resource for helping other families locate the help they need to help their children.
****Coming up - I'll be starting a state by state list of resource links and numbers. If you know of any that you feel could help other families, please share them with us so that they can be included too.****
No comments:
Post a Comment