Brain overload...

How did it get to be Aug already ?? My little girl turned 5 yesterday, still trying to figure out where time has gone. It was an ok day, tried my best to make it fun for her but Quinn was having a bad day and Emma has really been acting out lately. Emma is really upset at how Quinn gets EVERYTHING and gets whatever he wants  ( in Emma's words). Quinn's condition is really starting to affect the girls an I wish I knew what to do or what to say. They love their brother but are sick and tired of our lives revolving around Quinn seizures and Quinn's eating. I am sick and tired of it too.... but I know it isn't Quinn's fault and that is the only thing getting me through this right now. Even though it feels like a endless dark tunnel we are walking through with no exit. I love that little boy so much an still feel so helpless and blame myself for not being able to help/fix him and what I could have done that might have caused this.  I still feel like a failure as a parent and pretty much cry myself to sleep every night as I look at this little boy laying beside me and I am helpless.  It is horrible to feel so much guilt as a parent and wonder what you did that may have caused this.  Then added to that is the stress of life and everyday.
I was reading the other week something that is so true for me . Here it is....You become your child's case coordinator,nurse,therapist and advocate. You learn psychological jargon, medical procedures, and teaching skills. While coping with exhaustion and frustration, you learn stamina. You care for your children with disabilities without formal training and with limited recognition and support from the community.
So yes I feel over whelmed... I have learned how to do things nurses should be doing but I am his nurse. I care for him 24/7 and still have the job of cleaning and taking care of the house. Also have 2 other children to watch and care for.
One of the worst thing people can say to me right now is.... Oh well other people go through things like this too or other people have to go through trials... THAT makes me want to punch you in the face lol... That does NOT help at all...Just please lend a listening ear and feel my pain instead of trying to make me feel like lots of other people go through things.
Another topic... Married with Special Needs Children....... WELL you think your marriage is tough ... add a special needs child to that. I am reading the book right now which is helpful.  Your marriage takes its toll and its a fight to get through everyday. You don't see eye to eye and you are both left exhausted all the time mentally and emotionally.
Today Quinn has his neuro Dr appointment... will be bringing the 2 girls with since Kevin is working. Should be interesting ! I have a hard enough time focusing when they aren't there !Hence my brain being on overload all the time...
Shall keep you posted !

Attempting to get through another week

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 !

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 !

Trying not to be angry

This morning we headed into the city first thing as Quinn's bloodwork needed to be done. He was amazing as always with getting his blood drawn. Then as we were leaving the hospital and almost at our van he had a big tonic clonic seizure.  It lasted about 3 mins and then he slept in the van for a bit. Thankfuly I had ice with me from his lunch to put on his HUGE goose egg. He also scratched his knees. He went 3 days with no seizures so go figure the one time he doesn't have his helmet on he has to have one and hit the concrete. He cried so much and he looks so painful. I wish I could take away his pain and stop this hurt. I am so angry at this disorder and seizures.... WHY Quinn and WHY us... WHY can't it be fixed.... I wish I wasn't so angry at this condition.... it just kills me to have to watch him suffer over an over. He is such a good boy too... he rarely complains when at meal times everyone is eating food and he has his tiny meal of whipping cream, oil, medications, little bit of fruit and little bit of ham. I can see the hurt and frustration in his eyes though but he doesn't say anything. That hurt is killing me slowly as well.... It is sooo horrible not being able to help him or "fix" him. As a mother I feel like I am failing him because I can't just fix this. Its been over 3 months of this already... a few months into a life long battle.... So I need to work on getting my anger and frustrations dealt with but not sure how.

When it rains it pours...

What a week ! Started last week off with Quinn having seizures again. He had went 6 days with none and then started having about 5-10 a day again. He hasn't had one in 3 days now again so we shall wait for when they start again since that is the trend ;) This week I also got his forms back from the Dr with his diagnosis of Lennox Gastaut Syndrome. I also signed Quinn up for the Saskatoon Epilepsy walk on July 7th. He is doing the kids walk for epilepsy.
Then on Tuesday morning I got the dreaded unexpected call from my sister...whenever this happens it means bad news ! My Dad was in a bicycle accident while they were camping in the mountains. He hit a tree and then hit his head off a rock. He has a fractured skull, broken wrist, bruising to the front part of the brain and very sore, but they sent him home the same day ! Then I got another dreaded call yesterday morning.....My Dad was admitted to another hospital back home because he was still in severe pain. They ran another CT can and saw bleeding in the brain and swelling. So he is on high pain killers and they are hoping swelling with go down. I will give them a call today and see how he is doing.
One thing I have for sure learned these past months is we have no control over our lives... makes me sometimes feel hopeless with me being a control freak. I almost feel what is the point to planning anything ?
The local newspaper ran an article on Quinn, and another local newspaper is going to run something on him as well. The fundraiser the community is putting on is the 14th of July. It is so amazing they are doing this and will help relieve some stress !
Yesterday I also took the girls out to a movie... we do this about once a year since movies are crazy expensive these days ! We went to see Brave since they were looking forward to seeing a princess movie.
Emma also finished school on Thursday so Brooke, Quinn and I went to her little party in the afternoon. Felt like a dweeb since I was the only one with no husband there !! But Ive come to get used to being alone at everything and being a one man show !
Well the kids and I are off to church this morning and then working on cleaning the messy girls room!

Life changes in the past 3 months

Who knew so  much could change in 3 months ! Our lives have completely changed with Quinn going from a normal 3 year old boy to a special needs child. Myself going from thinking I was still somewhat "young" to having grey hairs all coming through and now having to dye my hair all the time to cover them up. My brain turning to mush and not able to focus on anything. Going from never having the girls be gone to having them away from home for 4 weeks in the last 3 months. Thinking my life was somewhat in our control to it totally not being in our control. My 6 year old daughter turning into a girl with teenage attitude. Looking at my life and thinking wow who knew so much could happen in 7 years. I went from care free and living life to married, 3 kids, having to move way to much and try and settle in, being alone with 2 babies in a strange new land while husband was away for 3 months becoming his dream job (which he thought at the time). So..maybe I have hit my mid life crisis ? Or it could be everything we have gone through the last few months. It is such a bizarre thing to lose complete control of your lives. The other day when we had funnel clouds in the sky and I could see them coming down I didn't even have any fear left in me. No fear at all.... I felt like ..you know what bring it on because you have thrown so much at me in the last 3 months why not a tornado...lol... yes sounds crazy I know... Just so odd how I go from having fear to no fear... I don't know if that is from exhaustion or other things.... I don't believe it is complete trust because I know I don't completely trust in my life... I have gained some trust but not 100% yet. Its like I am in a comatose state in my life.... nothing fazes me anymore and I feel like its just one shot after the other. Yes this all sounds depressing doesn't it... well its not totally depressing to me just how I feel most of the time. Its hard to have to listen to your little boy cry and scream for food and you can't give it too him because he can't have that food because of his extreme diet. It is so draining to watch him suffer through his seizures. So sad to see the sparkle kind of disappear in his eyes... it is still there at times but sometimes he just looks so tired and dead in the eyes. But I have to remain positive even though it is really hard too when the seizures keep happening an life is out of our control with Quinn and other things.

Trying to move on with life

Ever since Quinn's first event back in March of this year it is like I am stuck in that time. I can't believe Emma is done school next week already. I wish I could move on from this event and not feel stuck in it... guess that is the only way for me to describe it. It is like I am stuck in March and everything that has happened in between now and then is a blur.  Maybe that is normal for a traumatic event to burn a hole in your brain and make you feel like time just stopped but it didn't. I think I have completed my "mourning" period of this but maybe I haven't if I can't seem to move forward. Life is just so different now. I live every day minute by minute because things could change in a minute with Quinn. He still needs 24/7 attention and care so that is why the minute to minute. Plus the battle of food makes me live minute by minute ! I used to think into the future but that has all changed since Quinn's event. I can't even think a day in the future because it saddens me even though I try to hope for positive things. It is also hard because Quinn looks so "normal''... at times I forget about everything going on.
We are still waiting for genetic tests to come back on Quinn. We meet with the Dr's again on July 3rd so hopefully they can give us some info/news.
My girls came back home last week and my mom stayed to help out for almost a week. It was nice to see the girls but I forgot who makes all the noise in this house.... Brooke..Brooke... Brooke and a little bit Emma. Brooke is also being a little turkey when it comes to Quinn and food. Pointing out that she is eating something he can't ... Brooke just likes to tease and irate anybody she can. I also realized I have to cook for other people... because Kev and I were just eating whatever and whenever. It takes me so long to prepare and cook Quinn's meals that I am done with cooking and don't want to make anything for us !