Posted by: seserdr1975 | September 19, 2013

A Revalation

Good morning all! Yesterday I asked my Mom to help make some calls for me to continue look for a doctor. When she called the United Cerebral Palsy organization, she was told that they don’t have affiliates in Texas. Wait…What??? One of the largest states, in the country has no affiliates?? Really? To me that is just shocking and sad. Those who have Cerebral Palsy, don’t stop needing help when they hit adulthood. That is why organizations like www.chasa.org can be great conduits to help in the process. My Mom talked to the founder of CHASA, Nancy, and talked at length regarding the transition challanges we all face. I plan to follow up with Nancy today and see what I can do to help.

So…after nearly a month, a collapsed lung, and more time in the NICU’s “easy bake oven”, I came home. At that point the expectation was that I was about as ok as could be expected after such a rough start. I’m sure my folks hoped that the worst was behind them. No one could tell them if there could be any ongoing issues with me, so they took a breath and hoped all was well. And now my sister Jill had a liitle brother and I guess my hope would have been that I didn’t end up in one of her tea parties with her other dolls! That makes me laugh. The reality was that this was just the begining of a long journey for our whole family.

 

The second doctor didn’t call back. I begin to realize what a challange this may be to find a new doctor willing to work with me. That’s why its so important to connect with organizations and support groups to begin tackling and lobbying for better help.

Info:

http://en.wikipedia.org/wiki/Lobbying

 

 

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Responses

  1. So much of your journey you dont know or remember— and that is OK. So many times I would look into those big beautiful eyes on your not so good days and say ” not on my watch” and I had a hard time on my days off —- I didn’t trust you to behave while I was gone. Usually with good cause. As professionals we’re not supposed to become attached to our patients. But the NICU is a different world. The rules are the same….but when you spend the better part of your life caring for not only a baby but also the parents…..sometimes the rules go away.

    • Those eyes still have their effect. Just ask Melanie! After 38 years want to know the story. The whole story, good, bad or otherwise. It’s important for me to get the full picture so that I can help others from the correct context. I know that some of it may be tough or unsettling, but I’m good with that. It’s that important.


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