Day by day

How does a person not get frustrated an sad when they have to watch their little boy suffer with seizures all day long and continually get hurt over and over ? When medications fail to control his seizures, when Dr's just raise their shoulders and say we don't know.... When this has been going on for 9.5 months and your little boy has only gone 6 days with no seizures out of them 9.5 months. When your little boy is now occurring brain damage because of all his seizures, but we aren't sure of all the damage yet. Having to watch your child choke on food because eating which we all take for granted if made more difficult by seizures . Quinn chokes a lot on his food because he goes into a absence seizure or drop seizure while eating. When a person has to beg for drug coverage for your little child because the province and insurance don't want to cover the cost, but abortions are covered by health care. As parents making sacrifice after sacrifice for your child and your family trying to do what you think is best for everyone. As a mother trying not to feel guilt for not being able to protect and make your child feel better and also in the back of your mind always feeling guilty that maybe I did something wrong when I was pregnant or when he was little that caused this cruel disease.
We all face challenges in life... I just don't understand why some challenges are just so much more challenging. Sometimes I wonder if its because my children are the world to me and the most precious to me.  Maybe its to learn how to be self less, learn humility, learn grate fullness, learn compassion, and learn to love no matter what. To teach that things/stuff don't really matter in life, health is what is craved and longed for and in the end all that matters is family and love.  Something I have also learned through this all is in the end what really matters ??  Not redecorating your house, debating where to go for your next vacation, planning your next party or event, worrying about what OTHER people think of you and your life. I still struggle with most of these things in my life though. Not that I have a chance to do most of them :) I have lost a lot of friends ( not that I had a lot in the beginning haha ), I guess lost may not be exactly the right term but people get sick of hearing about Quinn, nothing ever really changes in my life it is always about Quinn and the next drug, seizures and more seizures. So the phone calls have lessened and almost stopped, I sometimes wonder why I have a phone then I remember yes to call 911 if needed and text the few people in my life :) It is also hard myself to be friends with people with healthy children. It is so hard to relate to them and I end up jealous of their healthy children and easier life. I wish I had the problems they complain about.
So I guess I still don't know how to answer my questions I asked :) Hence taking it day by day and realizing that there are some people out there that do care, some that show they care more and others weren't meant to be in our lives.

Some of the sad side affects of medications...

I have been thinking of writing this post for just over a week but lack of time and words to express myself have been preventing it from happening.
The past several weeks Q's aggression, temper, compulsiveness and obsession has become worse then it was before. This is really hard to talk about as he is my sweet little boy and it hurts to say bad things about him but awareness needs to be made. Also I know under that all is my little Q and it makes me so sad to see my little boy suffer.
Just so you all know we have been trying to get Q into a Child Psychiatric Dr for months because of his behavior which has just intensified. Finally last week I got all the forms to fill out for Quinn (about 16 papers) and then we still need to wait months for an appointment. It hurts me to know all the children needing help for their well being and others well being and our system is failing them all. Then we wonder why why why does a child/young adult go to extreme measures like a school shooting/ murder suicide and etc. I am in no way saying their behavior is acceptable so please don't think that. It just hurts me to know all these children needed help and we aren't providing the mental help needed.  It is time to open our eyes and see that these children are crying out for help and they ( most of the time) aren't mentally well and can't control their actions to a certain extent.
We have had to hide our knives and sharp objects this month in our home after several incidents with Q. One involved a cat and him having a butcher knife to the cat's neck I managed to get the knife away and the cat was unharmed. This is extremely hard to me to talk about to the public world as it makes me very sad for my little boy and I know it also horrifies people. This is just one incident out of several. Q's sleeping patterns are also very disturbed these last few weeks. He doesn't rest well at all and the other night was up from 11pm-5am yelling,screaming and twitching. The best way to describe the way he was is like an addict on a high or coming off a high.... I could not control him or calm him down. The girls end up waking up and also being up all night because of the noise. It is so sad to see my little boy go through something so awful and I can't help him or take away what is bothering him. He also daily throws his food/drinks across the home resulting in a huge mess. The littlest thing will set him off and he will have total temper meltdown. It could be the cereal not sitting right on his spoon or the cup is in the wrong spot. This makes it very difficult to keep up with housework as I am just continually cleaning up after Q. He also becomes physical with myself with everything from biting to punching. I just Thank God he is only 40lbs and not quite 4 years old because I don't know what I would do if he was bigger and older.
Bottom line is Q needs help... mental help and we don't know how much damage the seizures have caused to his brain ( which could be causing some of this) or if the medications are causing the issues. The only thing that keeps me going is knowing he is still my little man and he does still have some sweet loving moments.
My plea is ... please don't judge people with mental health problems or seem to be acting out ( and blaming it on bad parenting/etc ( some cases it may be) ). These children and adults aren't well and we need to accept that and find help for them. We need more resources available and more public awareness. People shouldn't feel ashamed about mental health problems and other shouldn't think they just need to suck it up or in some extreme cases believing it is a sin and people should just be able to get over it.
I LOVE my little man so much and wouldn't trade him for anything :)

Unknown hazards of drop seizures

Drop seizures..... they happen anytime, anywhere, no warning... I wish for this reason I could build a home fit for Quinn. A home that is built for a little boy who will only get hurt more as he gets taller and bigger. 
Most people don't even know all the common hazards for Quinn with his drop seizures. Here are some examples of things/items that can hurt Quinn.
-Forks
-Pencils/pencil crayons
-anything sharp or with a blunt edge that could puncture when he has a drop seizure
-Water ( when he has a bath we have to hold him because if he has a drop in the tub ( which he has) he goes under the water an sucks the water into his lungs).
He also chokes on his food when he has a drop seizure and he is eating. There is so much more to this horrible disease he has that people don't think of.
I truly wish I had a bubble of some sort to put him in. He doesn't understand why he can't do some things or needs to wear a helmet. We have be fighting with him to wear his helmet all the time lately because he says NO mom I don't have seizure. Then of course he does and gets hurt all over again.
Quinn is constantly hurting his legs,arms and body as when he has a drop seizure he just falls on whatever and where ever. So he just goes limp, falls and hurts his legs and arms because of falling in weird positions. He is covered in bruises all over his little body from falls.
It is so frustrating to hear all the Dr's say... well we don't know why this happens or what to do to control the seizures because everything that has been done doesn't help.
Last night we made a trip to emergency because he had a drop seizure into the corner of a filing cabinet in the house. He was bleeding a lot and we decided to bring him in because we figured it would need stitches. The Dr decided no to stitches because the laceration was to close to his eye and it had stopped bleeding. So they bandaged him up and we headed home. This is a typical day in our lives and his poor sisters have had to adjust as well. They know the drill and know what to do.... last night Brooke ran to get me a cloth that she has made wet in the water for Quinn's cut without me even asking. But this also weighs on them and they get so frustrated with how Quinn gets all the attention.
Here is praying for a good week free from emergency visits and that Quinn's little angels worked extra hard this week to protect him :) ps ... they do a pretty darn good job in my opinion

Our obession with *stuff*

This morning I posted a comment on a facebook page where people were talking about how the parking lots at Walmart and other stores were FULL for Canadian Black Friday sales.  My comment was " I can't believe how greedy people are with things, maybe we should all be sent to a 3rd world country and see if that would change society ways of thinking"
WOWZERS did I ever get thrown under the bus on this page... The negative comments just started pouring in on my post. Now I am not saying I am ANY better then these people. I'm not I am just obsessed with stuff as much as other people. So next time I will clarify my comment more and state I am thinking of the people that load their carts with toys and things they don't need.
This year has been life changing for us due to Quinn's health problems. It really puts things into perspective for us. Stuff isn't important even though I do like stuff. ( Like my Keurig which was an early Christmas present from Kevin and kids). I am all for saving money and getting great deals. But do kids really need another toy ? Do we really need that other Tv ?
I challenge everyone this Christmas to really think of stuff and how much we buy and give. I know this year I will be doing a lot of homemade gifts ( sorry people if you don't like homemade lol) because home made gifts mean so much more to me. Our kids will get 1 toy each and 1 clothing item from Kevin and I.
We are so blessed to live here in Canada were we have heat,water,food and way more possessions when we could ever need.
What is important to you this Christmas ? Also what are you Thankful for ?
We have so much to be thankful for and I pray we all can see that more and realize what is important in life :)

Ups/downs and mooning

Life is back to normal ( for now) around here ! Except that Kevin is gone which isn't normal and really hard for me to adjust too.
Quinn is back to his crazy self... energy has returned with vengeance to make up for the few days he was out of commission ! This morning I walked into my living room to see him standing on the bench in my bay window with his undies pull down and butt cheeks to the window mooning the school bus picking up the girls.  BOYS.... seriously would a little girl think hmmm I am going to show the world my butt ?? Thankfully Quinn is 3.5 and it is still somewhat funny !
Quinn had a day free of seizures !!! This is only the second time this has happened since March when he first started having seizures.  This is so amazing but of course I'm still on edge waiting for one to happen because that is the way our lives have been since March. Praying for another seizure free day tomorrow ! Not sure if the change in his medications is helping the seizures or if it is something else.
This morning was a rough go for me ( could have been I was just so exhausted from Quinn being up at 430am in the mornings), when I don't get proper sleep ( enough) I start to worry and stress. Them two evils we taking me over this morning. I know I can't control anything with our home selling or people looking at it. I just really wish it would sell already or SOMEONE look at it ! We did have the one showing a couple weeks ago but nothing came of that. Being alone with the kids is extremely hard, emotionally and mentally. Because Quinn has so many needs he takes way more of my energy then I already have then I have the girls also. All hell broke loose this morning... since Quinn was up at 430am the girls got up at 5am.... then the fighting started and screaming. Brooke refusing to go to school, the girls mad at me because they don't like the lunch I'm packing for them. Quinn yelling and throwing his breakfast because as soon as I give him what he wants for breakfast he doesn't want it anymore or its yucky and he will throw it across the room if I don't get to his highchair quick enough. Oh and to boot my coffee pot is not working like it should and coffee isn't that easy to come by. ( Really hope Santa brings me a Keurig for Christmas). Then there is Emma screaming at me because her clothes don't fit OK and they are to tight ( when they aren't) ( yes I could be thankful she wants to wear loose fitting clothes and I am). All this before 7am..... and then all hell breaks loose again at 330pm :)
So I crave the day when I can shower alone... pee alone...do anything alone... but then the realty hits that we aren't a normal family... we have a special needs child who most likely will always need 24/7 care and can't be alone. He may not have had seizures today which is amazing but he still needs help with everything from walking to getting a drink ( his balance is always off so he falls really easy and spills everything), his needs his diapers changed several times throughout the day and I have to try and understand him when he talks to me ( because his speech is somewhat slurred and hard to understand due to the seizures and brain damage).
But back to ONE DAY AT A TIME... It is just a really hard to thing accept. Other moms are taking about working out, going for a run, going shopping, getting their hair done, going back to work and these aren't things I get to do anymore. Our lives revolve around Quinn and his needs. Our needs are last and rarely happen.
I have to always remember this saying I read several months ago.... What screws us up most in life is the picture in our head of how it is supposed to be !
Someday peace will come and until then I just need to get them big girl panties on ;)

When all else fails ...SMILE !! :)

It has been a long time since my last post ! Things are always changing in our household it seems. Last month we found out we will be moving back to Alberta ! We made this choice because Quinn needs access to better health care since his condition is so unknown and Edmonton has more specialists then Saskatoon does. Also because I need my mommma... :)
So Kevin is already living in Alberta and working and I get to be a single mom til our acreage sells !! Then I move to Alberta with the kids, dogs and cats... oh and all our stuff.
Quinn meet with genetics specialist in Edmonton on Friday and they talked to us and said they feel Quinn doesn't have a treatable condition and they don't know what this is or why. They took a lot of blood for blood work and are going to take his DNA apart to see if they can find some missing links and etc. This process will take about a year to complete.  Quinn started to feel sick with a fever on Thursday last week... yesterday he had an EEG appointment and meeting with the peds neuro Dr and they suggested we bring him down to Emerg since we were in the hospital anyways. After listening to Quinn and checking him out they decided to run some x rays and blood work ( the blood work was horrible because all this veins are blown out from last weeks blood work but after 10 mins of us pinning him down and him screaming they finally found a vein that would work). They decided he has pneumonia and also found a heart murmur ! Go figure eh....They first wanted to determine that the murmur wasn't being caused from the pneumonia and it wasn't thank goodness ! So they treated him for the pneumonia and we will deal with the heart murmur later. During our 6.5 hours in the hospital Brooke who was with us was amazing..... she rarely tested my nerves... she must have known mommy was stressed out !! Also I am sick too so that doesn't help my nerves. 
So little things to be thankful for.... I am listing 10 but there is a lot more :)
1)  I am thankful the heart murmur isn't as severe as they thought...
2) Popsicles from the ER nurses for Brooke and Quinn.... they were a lifesaver !!
3) The little treat bag that Dr Gamble gave to the kids from the Starlight Foundation !
4) For Christine ( Emma's bus driver) that took Emma home after school and watched her for him until 7pm when we were out of the hospital.
5)For Dr. Cattell's comment of  OH I remember you ... you and your husband are such calm people and are just amazingly calm. ( from all the ER visits we have made with Quinn).
6) For the strength and courage to once again hold my little man down again as they try to find a vein to get blood from for blood work... holding your little one down never gets easier ( as you try to convince them you are doing this to help them).
7) For the nice Pharmacist at Walmart who said... you are still smiling through this all and I don't know why... my reply.... SMILE and smiling help everything when you don't know what else to do... SMILE lol... ;)
8) Quinn keeping his meds down after me having to put them in his mouth and hold his mouth closed... poor little guy is getting so strong and it hurts as a momma to have to pin your child down :(
9) Great report cards from the girlies from school !!
10) Quinn eating a slice of ham at supper tonight,.... first food in 5 days !!!!

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 !