Wednesday, April 30, 2008
Friday, April 25, 2008
Storms, balls and the circus
The weather here in Fort Worth has been so erratic. Some days it's bright and sunny and others it's black and stormy. Recently we've has severe thunder storms and tornadoes pass through very close to us and this is causing huge pressure changes. Emily missed 2 days of school this week because her legs and hand hurt so much. Her RSD is on the move, her right arm hurt all the way to the top. We're coping ...
It'll be interesting to see how Emily does with our pool this year. She hated last summer, she had to learn to swim again because she had limited use of her leg. This year Emily's leg has almost all of its range of motion so that should help. I'm looking forward to school being out so that my children can be children. I don't know how it'll be with me working this year, we'll have to make the best of it. I would love to take the children away for a week but I doubt I'll be able to pull it off financially.
I took Tom to buy some new shoes this week. His old shoes were about ready to walk off without him so it was way past time. He hates shopping so I was greeted with the usual pout when I told him where we were going but he soon perked up when he pulled on his really cool new sneakers. Tom's routine has been the same since he was tiny LOL. He picks the shoes he loves and pulls them on then he bounces up and down along one isle of the store. He does a lap of honor round the shoe section just to make sure they make him run faster and finally he arrives back to me with a massive smile and says "yessssss these are the ones" LOL. I always let him wear them home, he bounces to the car like Tigger. The only slightly scary thing about our shoe shopping outing? His feet are now the same size as mine and he's only 10!! My baby is getting older, what size will his feet be when he's 18??? LOL
My week was hard but I have only tomorrow left and I get Sunday off. I had more energy this week and things were way more organised in the house. Working full time and juggling the 20 balls that I have in the air at one time is a challenge. Tonight as I type I feel like dropping all but 2 balls(Emily and Tom) and running away to the circus. Since I'm such a good juggler there must be a place for me.
Although this week was hard I count myself lucky that I have such wonderful friends. This week Karen put Flamingo's in my front garden which made me laugh so hard. Jody found a hula Flamingo which is fun just like she is and Tammi surprised me with my favorite drink, Diet Dr Pepper with vanilla from Sonic twice not to mention the many chocolaty treats that she bought to my work LOL They provided hugs and smiles and they made me feel like I can actually do this. I'm so VERY lucky to have such amazing people in my life, I feel really blessed to know each and every one of you.
Maybe I can keep these balls in the air after all ...
It'll be interesting to see how Emily does with our pool this year. She hated last summer, she had to learn to swim again because she had limited use of her leg. This year Emily's leg has almost all of its range of motion so that should help. I'm looking forward to school being out so that my children can be children. I don't know how it'll be with me working this year, we'll have to make the best of it. I would love to take the children away for a week but I doubt I'll be able to pull it off financially.
I took Tom to buy some new shoes this week. His old shoes were about ready to walk off without him so it was way past time. He hates shopping so I was greeted with the usual pout when I told him where we were going but he soon perked up when he pulled on his really cool new sneakers. Tom's routine has been the same since he was tiny LOL. He picks the shoes he loves and pulls them on then he bounces up and down along one isle of the store. He does a lap of honor round the shoe section just to make sure they make him run faster and finally he arrives back to me with a massive smile and says "yessssss these are the ones" LOL. I always let him wear them home, he bounces to the car like Tigger. The only slightly scary thing about our shoe shopping outing? His feet are now the same size as mine and he's only 10!! My baby is getting older, what size will his feet be when he's 18??? LOL
My week was hard but I have only tomorrow left and I get Sunday off. I had more energy this week and things were way more organised in the house. Working full time and juggling the 20 balls that I have in the air at one time is a challenge. Tonight as I type I feel like dropping all but 2 balls(Emily and Tom) and running away to the circus. Since I'm such a good juggler there must be a place for me.
Although this week was hard I count myself lucky that I have such wonderful friends. This week Karen put Flamingo's in my front garden which made me laugh so hard. Jody found a hula Flamingo which is fun just like she is and Tammi surprised me with my favorite drink, Diet Dr Pepper with vanilla from Sonic twice not to mention the many chocolaty treats that she bought to my work LOL They provided hugs and smiles and they made me feel like I can actually do this. I'm so VERY lucky to have such amazing people in my life, I feel really blessed to know each and every one of you.
Maybe I can keep these balls in the air after all ...
Saturday, April 12, 2008
Update
Emily has been back in school for a few weeks now. Roy, her home bound teacher has been trying to plough through the many pieces of outstanding work. He's such a nice man, he really tries so hard to help Emily. Emily returned to school for Math only but next week I'm putting her back for English too (although she doesn't know this yet) LOL
Kelly our PT made me laugh so much on Wednesday that it really helped carry me through the week. Physically Emily is doing fairly well although the constant weather changes have caused several flair ups. I've learned not to fuss to much and to drag her back up after a couple of days so that the flair doesn't go on for weeks. On Wednesday she fell ... she fell straight down from a standing position into a sitting position and really landed hard on her bottom. Thursday I went to wake her and she was asleep but her face had this look of agony on it so I opted not to wake her. Thursday was a rough day. RDS still hovers silently all around us no matter how much we try to ignore it.
Tom tried out for band and he will now be playing Trumpet next year LOL I plan to build a shed in my back garden so that he can practice LOL His last report card showed straight A's and yesterday he painted a friends hallway for $15 so for Tom life is good. I've been playing Frisbee golf with Tom everyday after school to give him some special time and this is paying off, he doesn't feel left out anymore.
My life continues to be a constant juggle. Every day's different but as always I strive to keep going and make the most of every second.
Kelly our PT made me laugh so much on Wednesday that it really helped carry me through the week. Physically Emily is doing fairly well although the constant weather changes have caused several flair ups. I've learned not to fuss to much and to drag her back up after a couple of days so that the flair doesn't go on for weeks. On Wednesday she fell ... she fell straight down from a standing position into a sitting position and really landed hard on her bottom. Thursday I went to wake her and she was asleep but her face had this look of agony on it so I opted not to wake her. Thursday was a rough day. RDS still hovers silently all around us no matter how much we try to ignore it.
Tom tried out for band and he will now be playing Trumpet next year LOL I plan to build a shed in my back garden so that he can practice LOL His last report card showed straight A's and yesterday he painted a friends hallway for $15 so for Tom life is good. I've been playing Frisbee golf with Tom everyday after school to give him some special time and this is paying off, he doesn't feel left out anymore.
My life continues to be a constant juggle. Every day's different but as always I strive to keep going and make the most of every second.
Sunday, March 23, 2008
Stop, I want to get off
I can honestly say that I've hit some sort of wall LOL I've had it. I've had it with everything and I'm ready to get off this ride. Can someone please let me off???
Tuesday, March 11, 2008
My life ...
My day to day life has changed so much over the last 3 months. I now work close to 60 hours a week. I work round the corner from my house at a business we own so Emily and Tom can come with me. The financial stresses for the house and business fall firmly on my shoulders and this is so overwhelming. I have so many people screaming at me for large sums of money right now it just makes my head spin. This situation is just getting worse and worse and I see no end.
Emily's RSD hangs over my head like a huge concrete block. The pressure and hopelessness makes me feel panicked but those feelings have to stay locked inside.
Keeping Tom involved, happy and thriving is a challenge that takes time, energy and planning.
Emily can't stay focused on school work so she's slipping further and further behind, this is very worrying to me especially since I cant get the school to return my calls.
I need to prepare some legal papers but I just don't have time!!! This is really dumb!
Cooking healthy meals for my family has become difficult because I have no time and when I do get time I'm busy trying to organise and cope with the world. This bothers me.
I have a laundry mountain taller than my son and my floor looks like a barnyard. My garage is so full of junk you couldn't park a toy car in there let alone my focus and this makes me feel even more out of control.
My diet sucks and I can't organise myself well enough to make those changes that I need to make to stay healthy. This is also really dumb!
One of my dearest friends is struggling with her fathers illness and I wish I could split a very large bottle of wine with her. Unfortunately the ocean separates us.
Working full time would be fine if I were paid but right now I can't be so I work all these hours and still have to scrape for the bills to be paid. I really hate this. I hate the money issue in general, if that was off my head I'd feel 100lbs lighter.
Pete made an error with his home inspection business and I'm left to clear up the mess. If he'd listened to me in the beginning instead of being so freaking stubborn this error wouldn't have happened and this makes me feel angry.
A friend of a friend is threatening me with legal action because I did as she asked and re-homed a dog she'd found. She handed me the leash in front of a police officer so she's really insane but it's stress I don't need. I took the time to help her when as you can tell I really have no time and still I get shot in the foot. This makes me not trust people or want to be around anyone.
I feel angry towards Pete's family and my family for their lack of support, I'm fed up with always having to be the bigger person. I don't want to be the bigger person anymore, they should know better and I shouldn't have to feel bad about myself.
I have packages to get off to my dear friends in the UK as well as Birthday presents that remain unwrapped and undelivered to my little friends here, man I'm a failure!
Finally, it's 3:30 am and I'm sitting in my office typing this. I have to get up to get Tom off to school in less than 3 hours LOL On a positive note I have cleaned my kitchen, washed some clothes and updated my blog. I've unloaded my brain for a change so maybe now I'll sleep.
My urge to run away screaming is pretty high right now but hey, what can a girl do?
Emily's RSD hangs over my head like a huge concrete block. The pressure and hopelessness makes me feel panicked but those feelings have to stay locked inside.
Keeping Tom involved, happy and thriving is a challenge that takes time, energy and planning.
Emily can't stay focused on school work so she's slipping further and further behind, this is very worrying to me especially since I cant get the school to return my calls.
I need to prepare some legal papers but I just don't have time!!! This is really dumb!
Cooking healthy meals for my family has become difficult because I have no time and when I do get time I'm busy trying to organise and cope with the world. This bothers me.
I have a laundry mountain taller than my son and my floor looks like a barnyard. My garage is so full of junk you couldn't park a toy car in there let alone my focus and this makes me feel even more out of control.
My diet sucks and I can't organise myself well enough to make those changes that I need to make to stay healthy. This is also really dumb!
One of my dearest friends is struggling with her fathers illness and I wish I could split a very large bottle of wine with her. Unfortunately the ocean separates us.
Working full time would be fine if I were paid but right now I can't be so I work all these hours and still have to scrape for the bills to be paid. I really hate this. I hate the money issue in general, if that was off my head I'd feel 100lbs lighter.
Pete made an error with his home inspection business and I'm left to clear up the mess. If he'd listened to me in the beginning instead of being so freaking stubborn this error wouldn't have happened and this makes me feel angry.
A friend of a friend is threatening me with legal action because I did as she asked and re-homed a dog she'd found. She handed me the leash in front of a police officer so she's really insane but it's stress I don't need. I took the time to help her when as you can tell I really have no time and still I get shot in the foot. This makes me not trust people or want to be around anyone.
I feel angry towards Pete's family and my family for their lack of support, I'm fed up with always having to be the bigger person. I don't want to be the bigger person anymore, they should know better and I shouldn't have to feel bad about myself.
I have packages to get off to my dear friends in the UK as well as Birthday presents that remain unwrapped and undelivered to my little friends here, man I'm a failure!
Finally, it's 3:30 am and I'm sitting in my office typing this. I have to get up to get Tom off to school in less than 3 hours LOL On a positive note I have cleaned my kitchen, washed some clothes and updated my blog. I've unloaded my brain for a change so maybe now I'll sleep.
My urge to run away screaming is pretty high right now but hey, what can a girl do?
Long time no blog ...
It's really hard when you take a small blog break because as fast as my life is it's hard to catch up in the short time I get to actually sit down and type. I will however give it a go :)
I'm trying to get Emily back to school but it's just not happening. I called and asked for a letter to be written by Emily's doctor but he was away on vacation, finally it was faxed across to the school last Friday (3 weeks after I requested it) They truly do their best, I'm not complaining. I have now left 3 messages with the school and not had my call returned which is very frustrating. Again these guys have tried really hard to help Emily but I need to get her back to school!!
Physically we have good days and bad. Today has been bad but we'll just celebrate the several good days that she's had recently. I bought her some skinny jeans she thinks as a cool gift but they are actually to tight for her brace LOL Ahhhhh those sneaky Physical therapy tricks!! She loves wearing them because they make her feel attractive and we've found some DC shoes that she can wear that she says feel comfortable. She's quite a beautiful young lady.
Tom struggles daily with Emily. We have normal sibling rivalry mixed in with jealousy that everyone pays attention to Emily before him and added to that is a healthy does of guilt that he feels jealous. Emily can be snappy when she hurts but imagine her hurt and hormonal!! Quite a combination I can tell you and the other day Tom had just had enough. A small altercation ended in the remote control leaving Toms hand rather rapidly and finding it's resting place on Emily's right eye socket. I'm not sure who was the most devastated, Tom or Emily but lets just say that since then things have changed.
I can't imagine what it must be like to be Tom but I try. He was so ashamed of hurting Emily I didn't yell or punish because seeing her black eye each day was enough. Instead I'm setting him up with a support network and spending more time talking to him and teaching him ways to control his frustration. I'm also working with Emily to help her understand how Tom feels, this includes letting her know that this isn't her fault because that's all she kept saying after "if I hadn't got RSD this wouldn't have happened".
Several weeks have passed and Emily and Tom are getting along better. Tom's being much more open about how he feels and I feel slightly more in control.
This accident has changed so much of our lives, it's really hard. You shouldn't question why this happened because looking back is a waste of valuable time but I do hope things improve.
I'm trying to get Emily back to school but it's just not happening. I called and asked for a letter to be written by Emily's doctor but he was away on vacation, finally it was faxed across to the school last Friday (3 weeks after I requested it) They truly do their best, I'm not complaining. I have now left 3 messages with the school and not had my call returned which is very frustrating. Again these guys have tried really hard to help Emily but I need to get her back to school!!
Physically we have good days and bad. Today has been bad but we'll just celebrate the several good days that she's had recently. I bought her some skinny jeans she thinks as a cool gift but they are actually to tight for her brace LOL Ahhhhh those sneaky Physical therapy tricks!! She loves wearing them because they make her feel attractive and we've found some DC shoes that she can wear that she says feel comfortable. She's quite a beautiful young lady.
Tom struggles daily with Emily. We have normal sibling rivalry mixed in with jealousy that everyone pays attention to Emily before him and added to that is a healthy does of guilt that he feels jealous. Emily can be snappy when she hurts but imagine her hurt and hormonal!! Quite a combination I can tell you and the other day Tom had just had enough. A small altercation ended in the remote control leaving Toms hand rather rapidly and finding it's resting place on Emily's right eye socket. I'm not sure who was the most devastated, Tom or Emily but lets just say that since then things have changed.
I can't imagine what it must be like to be Tom but I try. He was so ashamed of hurting Emily I didn't yell or punish because seeing her black eye each day was enough. Instead I'm setting him up with a support network and spending more time talking to him and teaching him ways to control his frustration. I'm also working with Emily to help her understand how Tom feels, this includes letting her know that this isn't her fault because that's all she kept saying after "if I hadn't got RSD this wouldn't have happened".
Several weeks have passed and Emily and Tom are getting along better. Tom's being much more open about how he feels and I feel slightly more in control.
This accident has changed so much of our lives, it's really hard. You shouldn't question why this happened because looking back is a waste of valuable time but I do hope things improve.
Friday, February 15, 2008
School
I had a meeting with Emily's vice Principal, Bronwyn. She's such a nice person and I'm so grateful to her for everything she's done to help Emily this school year. It's clear that not enough work's getting done here at home for Emily to go forward so I had to come home and crack the whip. Emily has a lovely home bound teacher who is already overwhelmed with her many other students but she tries so hard to get Emily through her work. Usually after she leaves Emily crashes so not much more gets done. I set some higher goals for Emily and now she'll have to work harder to pass this grade. I know she can do it because she's totally awesome!
During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.
On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.
During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.
On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.
Tuesday, February 12, 2008
Yesterday
The cold weather has been difficult for Emily. Unable to get her legs warm, her pain has increased. I really don't enjoy watching Emily struggle, I would swap places with her in a heartbeat.
There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.
Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.
I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.
Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.
There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.
Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.
I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.
Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.
Sunday, 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 LOLSaturday, 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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