Another week has gone by an now another is starting.... I really wish I could wake up every morning happy go lucky and ready to take on the day. But no everyday I dread waking up, dread the day and wonder how I am going to get through the day and week. Everyday is the same old seizures, fighting with Quinn about food and trying to get Quinn to eat. Then on top of that all Quinn yelling at me, biting me when he is frustrated and trying to run away or hide. Then finally they all go to bed and I get an hour of no stress or watching Quinn like a hawk... go to sleep and don't want to wake up til tomorrow because then it will all start again. Life of a mom to a special needs child is sure not a walk in the park.... I am struggling so much with this because I don't have the patience to get through everyday. I am fighting to get through every 5 mins, I feel trapped in this life of downs. It seems we always get bad news about Quinn. His seizure count is up again, his daily movements like using his hands has gone downhill... he is always very shaky. I am trying everything I possibly can to help him and nothing seems to be working. So trying to stay positive isn't easy. This morning I have to attempt to get groceries with the 3 kids ... this itself is a challenge with Quinn being on his diet. I will be ready to cry by the time I leave the store as Quinn will screaming because he can't have the food.
When will this get easier ? Or bearable....
Life sure isn't what you plan or expect !
Monday, July 23, 2012
Wednesday, July 18, 2012
Blah blah blah blah....
Hard to believe it has been a few week since my last post ! I really wish time would go back to normal for us.. it is still like we are in a time machine and its on hold in March. But in reality it is middle of July and summer is half gone.
Quinn has been on the Keto diet for over 7 weeks now, things aren't going wonderful yet with the food. He is still fighting the food diet even though I have spent hours coming up with new recipes and trying to make some foods he likes. This is very frustrating for me as I put so much effort into this and it seems like it is all for nothing. Yes the diet is helping control some of the seizures but Quinn is still having around 10-15 drop seizures a day and several absence seizures. Tonight he also snuck a whole cookie which is like really bad.... so now we need to be prepared for bad seizures over the next few days. I am in a tough situation... I as his mother want to do everything I can to help him and control his seizures. The diet is helping to control some and it does work somewhat. But I am frazzled, exhausted and feel like all I do is spend the day in the kitchen. So my choices are I choose to make my life a bit easier and stop the diet. Which gives me some freedom to not be in the kitchen all the time an having to watch him like a hawk around food and listen to him cry, scream and fight for food. OR stay on the diet and control some of his seizures so his brain damage isn't as bad... What great choices !! Sigh.... I have been so torn on this since we first started the diet. I wanted the diet to work so badly an it does but not 100%. So I choose for me to be selfish or me fight to get through everyday. Such a hard hard choice and I just have no clue what to do. I am a horrible mother if I stop the diet because I fail to provide what I can to control his seizures to some extent.
The girls came back on Saturday, wow is life way more busy with them around ! My kitchen time is even more and the noise level in the house is LOUD. Lots more fighting since they have each other to fight with ! Brooke and Emma pushing every boundary they can with me and me not having the energy to fight with them. Yes this is sounding like a pity party isnt it... I just feel the last 2 day I have so much on my plate and I can handle this with just Quinn but when the girls are here its too much. So I have to figure out how to manage this and how we are going to do this. Honestly I can't wait for school to start because Emma will be in school 5 days a week and Brooke will be in Kindergarten. I love them all to death but this momma just can't be superwoman.
Speaking of superwoman... I still have letters to write to the hospital, MLA and public affairs in regards to Quinn's health and the lack of health care available in SK. Hopefully I can get to that by the end of the month.
This past Saturday the community held the benefit for Quinn. It was an amazing night and lots of fun for the kids ! Sunday I was still feeling great and so uplifted by the community and everyone who showed their support. BUT then Monday came haha.... I still feel very supported don't get me wrong... I just was beginning to feel like superwoman over the weekend because I was so calm, under control, never shed a tear when talking about Quinn and his condition. Then that all came crashing down on Monday !! I realized I'm not superwoman... and sometimes I don't even know how I am going to get through the day.
But I am a very good actress apparently and put on an amazing front to everyone I meet. In private that is completely changed and I don't even seem to know how to get dressed or tie shoes ! My life is consumed by Quinn's diet, seizures, his medical condition, me reading books on brain stuff ( yes stuff lol bc my brain is fried right now).
Ok enough about that.... some news that does make me happy though is that finally after 2 years we will most likely have PUPPIES in 8-9 weeks !!!!!! SOOOOOOOOOOO excited !!!!!! I witnessed 2 ties in the last 2 days between Aerielle and Sebastian. My poor children are horrified by how babies get into tummies now but oh well.... easy facts of life lesson haha..
Another subject I wanted to bring up... On Sunday in church I listened to a message that really hit me... It was about sins that other people don't see. Made me really think about how I have so many built up, wrong feelings.... I have been struggling so much with the following feelings since Quinn got sick. Envy and jealousy towards people with healthy children, Anger towards this disease and sickness and why us.
I am exhausted of fighting for Quinn health all the time, fighting for every appointment, hounding Dr's and nurses to get things done. Yet somehow I will keep going on not sure how but don't really have a choice in the matter !
Quinn has been on the Keto diet for over 7 weeks now, things aren't going wonderful yet with the food. He is still fighting the food diet even though I have spent hours coming up with new recipes and trying to make some foods he likes. This is very frustrating for me as I put so much effort into this and it seems like it is all for nothing. Yes the diet is helping control some of the seizures but Quinn is still having around 10-15 drop seizures a day and several absence seizures. Tonight he also snuck a whole cookie which is like really bad.... so now we need to be prepared for bad seizures over the next few days. I am in a tough situation... I as his mother want to do everything I can to help him and control his seizures. The diet is helping to control some and it does work somewhat. But I am frazzled, exhausted and feel like all I do is spend the day in the kitchen. So my choices are I choose to make my life a bit easier and stop the diet. Which gives me some freedom to not be in the kitchen all the time an having to watch him like a hawk around food and listen to him cry, scream and fight for food. OR stay on the diet and control some of his seizures so his brain damage isn't as bad... What great choices !! Sigh.... I have been so torn on this since we first started the diet. I wanted the diet to work so badly an it does but not 100%. So I choose for me to be selfish or me fight to get through everyday. Such a hard hard choice and I just have no clue what to do. I am a horrible mother if I stop the diet because I fail to provide what I can to control his seizures to some extent.
The girls came back on Saturday, wow is life way more busy with them around ! My kitchen time is even more and the noise level in the house is LOUD. Lots more fighting since they have each other to fight with ! Brooke and Emma pushing every boundary they can with me and me not having the energy to fight with them. Yes this is sounding like a pity party isnt it... I just feel the last 2 day I have so much on my plate and I can handle this with just Quinn but when the girls are here its too much. So I have to figure out how to manage this and how we are going to do this. Honestly I can't wait for school to start because Emma will be in school 5 days a week and Brooke will be in Kindergarten. I love them all to death but this momma just can't be superwoman.
Speaking of superwoman... I still have letters to write to the hospital, MLA and public affairs in regards to Quinn's health and the lack of health care available in SK. Hopefully I can get to that by the end of the month.
This past Saturday the community held the benefit for Quinn. It was an amazing night and lots of fun for the kids ! Sunday I was still feeling great and so uplifted by the community and everyone who showed their support. BUT then Monday came haha.... I still feel very supported don't get me wrong... I just was beginning to feel like superwoman over the weekend because I was so calm, under control, never shed a tear when talking about Quinn and his condition. Then that all came crashing down on Monday !! I realized I'm not superwoman... and sometimes I don't even know how I am going to get through the day.
But I am a very good actress apparently and put on an amazing front to everyone I meet. In private that is completely changed and I don't even seem to know how to get dressed or tie shoes ! My life is consumed by Quinn's diet, seizures, his medical condition, me reading books on brain stuff ( yes stuff lol bc my brain is fried right now).
Ok enough about that.... some news that does make me happy though is that finally after 2 years we will most likely have PUPPIES in 8-9 weeks !!!!!! SOOOOOOOOOOO excited !!!!!! I witnessed 2 ties in the last 2 days between Aerielle and Sebastian. My poor children are horrified by how babies get into tummies now but oh well.... easy facts of life lesson haha..
Another subject I wanted to bring up... On Sunday in church I listened to a message that really hit me... It was about sins that other people don't see. Made me really think about how I have so many built up, wrong feelings.... I have been struggling so much with the following feelings since Quinn got sick. Envy and jealousy towards people with healthy children, Anger towards this disease and sickness and why us.
I am exhausted of fighting for Quinn health all the time, fighting for every appointment, hounding Dr's and nurses to get things done. Yet somehow I will keep going on not sure how but don't really have a choice in the matter !
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