It's been so windy that every leaf has fallen from the tree in our front garden. Emily, Tom and I decided to bury my car LOLSunday, January 20, 2008
Windy!
It's been so windy that every leaf has fallen from the tree in our front garden. Emily, Tom and I decided to bury my car LOL
Saturday, January 19, 2008
Choices
I always have to make decisions, how do we know which way to go? When you have a chronically ill child you have so many choices to make each day. Your choices directly effect your child so which choices do you make. It's exhausting!!
In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.
I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)
The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL
Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.
RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.
In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.
I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)
The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL
Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.
RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.
2008
We spent 2007 reeling from the shock of Emily's "accident" and dealing with issues such as finding a good doctor and financial strain. We also dealt with alienation from both of our families. Catastrophic illnesses effect families in different ways. Some pull closer and become super supportive, others pull away and fail to comprehend the magnitude of what's happening. Sadly our families are the latter. I'm not bitter. While I understand that RSD is somewhat invisible to the eye and I understand that they don't truly get it, I wont forget their lack of compassion. At the same time I wont allow it consume me. 2008 See's me walking on without them. I will not carry the baggage that is our families dysfunction so to them I shrug my shoulders.
2008 brings a different mentality here. Last year RSD ruled so many aspects of our lives, this year we must push it to the side. We've lived with the horrific shock of what happened and we've mourned the loss of the old Emily and now it's time to push forward into maintenance mode. It's not easy but I make the mental decision each day before my foot hits the floor in the morning that the day will be the best we can make it.
This year I go forward without my friend Steve. I miss him everyday. Knowing him made me a better person and I will continue to be the person he knew and loved. He taught me so much, he's my guardian angel. His body may be gone but he stands behind me everyday and gives me the courage to keep going.
Financially we're ruined LOL January bought all negative bank accounts and to many bills but I'm trying not to stress out. If I don't have it and I can't get it what's the point of stressing about it LOL I'm just going to end up broke and sick myself so I'm just trying to be relaxed. If I vanish for a while again you know they cut my power off LOL
Emily was pulled from school before Christmas because she just doesn't have the stamina to stay for a full day. Removing her from school is not the best option especially as home bound services offer only 4 hours of tuition per week. With everything Emily's education has now fallen into my hands. I'm learning algebra again LOL I hated it the first time!! Her RSD pain has been slightly better than before Christmas and I'm very thankful for that. I've learned to take the good days and cherish them.
2008 brings a different mentality here. Last year RSD ruled so many aspects of our lives, this year we must push it to the side. We've lived with the horrific shock of what happened and we've mourned the loss of the old Emily and now it's time to push forward into maintenance mode. It's not easy but I make the mental decision each day before my foot hits the floor in the morning that the day will be the best we can make it.
This year I go forward without my friend Steve. I miss him everyday. Knowing him made me a better person and I will continue to be the person he knew and loved. He taught me so much, he's my guardian angel. His body may be gone but he stands behind me everyday and gives me the courage to keep going.
Financially we're ruined LOL January bought all negative bank accounts and to many bills but I'm trying not to stress out. If I don't have it and I can't get it what's the point of stressing about it LOL I'm just going to end up broke and sick myself so I'm just trying to be relaxed. If I vanish for a while again you know they cut my power off LOL
Emily was pulled from school before Christmas because she just doesn't have the stamina to stay for a full day. Removing her from school is not the best option especially as home bound services offer only 4 hours of tuition per week. With everything Emily's education has now fallen into my hands. I'm learning algebra again LOL I hated it the first time!! Her RSD pain has been slightly better than before Christmas and I'm very thankful for that. I've learned to take the good days and cherish them.
Monday, January 14, 2008
Update
It's been a long time since my last update. Christmas has come and gone and I'm trying to settle down into 2008.
Before Christmas Emily stared to decline so I stopped blogging to allow myself to take a breath during my only rest times. I can't live and breathe this 24 hours a day it's just to hard so I focus on the things that I can deal with and let the rest take care of itself, hope this makes sense.
Christmas was just wonderful. A special friend donated enough money to Emily's fund to allow me to create the Christmas that my children deserved. I was so down during the run up to Christmas because we're just so drained of money right now and I didn't know how I was going to pull off any kind of anything. My children would have made do with what I could provide and never said a word but I wanted so much for this year to be special because last year was just horrible. I can remember locking myself in the bathroom and sobbing after our scary Christmas lunch in the hospital last year, our world had fallen apart. I was so down about it this year and then along came a magic envelope with the promise of a real Christmas and again I sobbed but this time with relief. I'll never be able to thank Leaman enough for that gift, he really has no idea what an impact he had. Other friends also helped make Christmas special for us this year, we are so very lucky to have such amazing people in our lives. Thank you so much to all of you!
Christmas day was fun! I blubbed pathetically as the kids opened presents LOL It's hard not to be emotional! We bought Emily the present of her dreams, a cell phone! We called it as she unwrapped the present, she screamed! Tom got his dream present which was a PSP with Darth Vader on the back :)
New traditions were made this year and resolutions set. 2008 is going to be a much better year for us, a year in which we'll do what we can to give back to our community.
Before Christmas Emily stared to decline so I stopped blogging to allow myself to take a breath during my only rest times. I can't live and breathe this 24 hours a day it's just to hard so I focus on the things that I can deal with and let the rest take care of itself, hope this makes sense.
Christmas was just wonderful. A special friend donated enough money to Emily's fund to allow me to create the Christmas that my children deserved. I was so down during the run up to Christmas because we're just so drained of money right now and I didn't know how I was going to pull off any kind of anything. My children would have made do with what I could provide and never said a word but I wanted so much for this year to be special because last year was just horrible. I can remember locking myself in the bathroom and sobbing after our scary Christmas lunch in the hospital last year, our world had fallen apart. I was so down about it this year and then along came a magic envelope with the promise of a real Christmas and again I sobbed but this time with relief. I'll never be able to thank Leaman enough for that gift, he really has no idea what an impact he had. Other friends also helped make Christmas special for us this year, we are so very lucky to have such amazing people in our lives. Thank you so much to all of you!
Christmas day was fun! I blubbed pathetically as the kids opened presents LOL It's hard not to be emotional! We bought Emily the present of her dreams, a cell phone! We called it as she unwrapped the present, she screamed! Tom got his dream present which was a PSP with Darth Vader on the back :)
New traditions were made this year and resolutions set. 2008 is going to be a much better year for us, a year in which we'll do what we can to give back to our community.
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