The most difficult aspect of having a children with a rare and virtually 'unknown' syndrome is that very few professional know anything about it. You can see professional after professional and yet feel totally ignored and misunderstood. You try and tell them a concern you have, only to to be ignored as being neurotic or a 'wannabe Dr', when in reality you live and breathe every difficulty you children has, every symptom, every possible complication and then speak to others in the same position, research and then research some more - so in effect you know what is wrong or know how the problem could most probably be sorted yet - yet very often are not listened to and totally ignored. Or in the worst case scenario told you are exaggerating your child's illness to make them 'more disabled'. Why would anyone do that??
Well yesterday for the first time in years we met someone who not only knew about our daughter's disability, but actually listened to our daughter's problems, acknowledged that our concerns were valid and offered appropriate and viable ways to try to address the difficulties.
We left the appointment as if a weight had been lifted off our shoulders, as if there was hope that certain aspects of her disability that caused pain or significant issues may be eased - the feeling was amazing!
On a different note - Grace started her sleep meds last night - she slept for a whole 6 hours without waking up! I think that must be a first!! 6 solid hours of sleep! Wow!! Only problem was that I was still awake and checking on her like a new born baby throughout the night - but old habits take a while break!
No comments:
Post a Comment