my daughter transitioned smoothly to the new ward. last night i was concerned she would sleep ok and adjust to the new environment, new room, etc.
when i visited her this morning, she was dressed and cheerfully smiling, and found a nintendo game set up in the visiting room and for the first time in years was able to remember how to work the machine, to turn on things and do what she was capable of before has been lost for many years.
she has commented with her returned sporadic ability to speak, that "i feel like i just woke up from a coma".
she has a lot to say, and has experienced much in the system the last decade. she has lost dignity in ER's when they placed her in seclusion rooms and left to lay in her urinated clothing.
the entire time, i have not left her side, and as a mom have witnessed and felt such painful experiences, that at the end of the day it leaves me to question why the system seems to be set up to question parents or advocates, actually let me be blunt: i've been scrutinized, ridiculed, been yelled at and talked down to by several doctors, all in the name of asking questions.
i asked one doctor if she could have TUMS for diarrhea, and he told me "if you want to become a psychiatrist go to school".
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i weather the storm of focus being placed on advocacy and return the focus to my daughter and her care where the focus should be.
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she deserves what everyone in the system and all hospitals deserve. she deserves to be treated as an individual with potential for wellness and progress, to ultimately reside in the least restrictive environment in an appropriate setting. in any setting she is in, i would like to see her have offered what i gave her and still do. love, compassion, and opportunity. she also should not have to become part of a political agenda or internal politics discussion as a result of advocacy on her behalf.
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she played a Nintendo game today, and for the hour or so i saw her she seemed ok and she laughed with us, ate some candy and drank a soda, went to have her lunch and tomorrow is a new day. always hoping for the best for her. i have to say the best thing has been the last few months regardless of where she has been, is to enjoy her laughter and the sound of her voice again.
don't ever lose your voice, Lindsay.
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9 comments:
This must be a huge relief, Stephany.
Tomorrow will be tomorrow, but it must have been a great moment to hear her say that.
It sounds like this is a good change. I hope it continues to be and I will keep you and Lindsay in my thoughts and prayers.
"i feel like i just woke up from a coma."
Now that is *very* interesting. I wonder what she remembered that caused her to feel like that? And I wonder what led her to remember it - the change of scenery, but then she's had those, before?
Matt
I think it's wonderful that Lyndsy had a good day. Sometimes the memory of the good days, will get you through the bad days. Bouncing back and fourth like that, it's complicated how the brain works, it's such a mysterious puzzle?
I only wish that I was closer to my son, so I could see him as often as you see your daughter.
an answered prayer.
<><
This is so great! I am happy for you both.
thanks everyone, for support, prayers and positives all sent this way.
barb, i wish you could see your son more too.
this is utterly exhausting, it's takes a toll, but its totally necessary, considering she is being bounced around, and still has no plan in place, now under the magnifying glass of the hospital as an advocate, let's just say asking for outside time turned into a HUGE deal.
hopefully it will continue to be positive from here on out.
Stephany, I'm glad she had a good day.
It's strange that asking for your daughter to have fresh air would be met with such rage. It makes you wonder how long some of those patients have been locked up without any access to the outdoors. Sad.
well, Lisa, the people she left behind on that ward are some to keep in mind.
the battle has been positively unbelievable, but, forging on.
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