some things {just} never change

so to catch you up on the latest here in our corner of life:

Sam is now done with school, moved out to the town 30miles from us into a cool little basement suite and has been working for a local farmer there for about 2 months. 

He seems to really enjoy his job (working with both cattle and grain -- the grain seeding and all that is included in that is a new adventure for him). 

On this past Friday, Dennis and I headed into Brandon for a quick trip to pick up some farming supplies and received a phone call from Sam that should he go to the dentist to look at the tooth that the calf broke when it kicked him in the jaw!
We got things sorted and got him to the dentist before he left for the weekend and then off to the hospital to check on concussion risk and other issues that may have come from it. He was checked over by the nurse and sent for X-rays (in case of a fracture) then we were sent back to the doctor to have him fully checked out.

I went in the office with Sam for a few reasons (one of them being that we are not fond of this doctor or the bedside manner but in our small town {and saddly even neighbouring towns} there is no choice of doctors -- you hav to use the one they 'gave you' basically)but mostly for moral support as he is not used to having to deal with these medical issues on his own AND lets not forget ... well... he forgets!
So I was there to help him out.
Firstly, she didnt even look at his X-rays, stating that she could 'see he had no fractures', then when he told her about  his BI and seizures and whatnot, she 'listened' (using that word loosely here) because as it turns my concerns were totally founded -- but that comes later. She said he had no concussion but it was good for him to come home with me so we could be there if 'anything happens' (now what would happen if there were no concussion or fractures?!) Take it easy this weekend and no work til Monday...
NO CONCUSSION--- yet he had blurry vision and a headache... ok... maybe I am over protective.... but really!?
NO FRACTURE -- from a glancing look and a bit of poking with her fingers... ok no screaming from Sam either... so thats good.

Sam came home with us, slept crappy, ate very little and looked like hell on Saturday morning. Swollen face, circles under his eyes and tired. But he got thru the day and did a bit of tinkering, admittedly he went for a ride on the dirt bike (which I was against) and then headed home to meet some friend for a movie intown (but no driving). Woke up feeling a bit rough on Sunday but felt better than Saturday -- so he must be on the mend. Then up on Monday morning for work...
dizziness, nausea, blurry vision and a general feeling of crap. NO going to work, calls me and i tell him to get to the doctor again and make sure she looks at the xray  AND listens to you!
Luckily h is able to get in in the afternoon and this time she listens ... i think.
Her diagnosis is that Sam was having a delayed reaction to Fridays activities (concussion!?!?!) and he probably has an infection -- so med's so that it keeps a fever away and risk of seizures -- and no work for another 2 days! (updated count of days off now 4! Four days with no pay and Sam is stressing a bit from it...)
Some things just never change! I thought we were done with doctors and them not listening to us about Sam and his BI. Doctors need to start listening to the caregivers about things - no matter how small or 'insignificant' they think the information is! We usually know a lot more about BI's, symptoms, new treatments, expectations... you name it we usually know all about it! JUST LISTEN DAMN IT and stop making us feel small and crazy! We 'specialize' in this, they usually don't.

**sigh** Ok Rant is over: Sam is starting to feel better and hopefully back to work tomorrow.

Living on the edge...

The last few weeks and days have been incredibly crazy  hectic .... stressful here. I am not usually one to talk much about Dennis on here but lately he seems to be having his own issues with his injury which have been causing me more stress. He is on a one track mindedness route it seems and he can't seem to get off it. He is literally eating, breathing and living the farm.... which is fine to a point but he gets stressed about things and will only talk about cows, tractors, the rain and how it is going to effect crops, fencing, cows, calves, equipment ... did I mention cows? So when I have had to deal with issues with Sam (and believe me these days there have been MANY of them)he is hard to get him to hear me and give me the help I need. He hears me talking but not always hears what I am saying -- almost as if I am speaking french to him. The other night Sam was having a major sensory overload issue (he had spent the weekend with grandpa and grandma then came home to 7 people, 5 dogs, the usual Sunday dinner rush, getting lunches ready for school on Monday, dishes to be washed, etc). He was vibrating like mad and his mouth was going a mile a minute to match his attitude. Dennis and my mom were talking and Sam was in his world... I had to take Sam out to the porch to help him to get re-focused on the task at hand and to regroup... Dennis tho most of the night had to keep asking things to be repeated. He said he was not able to follow anything being said and it was extremely evident ... to me.
I struggle with pointing out Dennis' deficiencies. I am always scared I am going to say the wrong thing or not get across what I am trying to say OR that he will think I am treating him like a kid or worse. So I let it all go until I can't hold it in anymore and then look out. Then I have a melt down ... and it ain't pretty...
I need to learn how to talk to him and let out my frustrations in a healthy way before things get to where I am feeling like I waaaaaay out there on that darn ledge.

this is not that post...

this is my motto these days...

Soon I am hoping to write a post that is more cheery and upbeat and filled with rainbows and unicorns... but this is not that post.

One day I will write a post that says someone is actually listening to me and believes what not only myself but the rest of the family  and his teachers at school sees...
but this is not that post.

There will come a day where I can say that I fully trust and have faith in our doctors...
but this is not that post.

Ever since Sam has been diagnosed with seizures we have dealt with so much that we are exhausted. Looking back over my posts from last summer/fall and reading how once Sam was on these lovely seizure medications how he has slipped further and further from us. His moods are severe and extreme, his tiredness is NOT typical teen behaviour, he doesn't eat yet is gaining weight, he doesnt exercise as he has no energy most days to get up the stairs to go to bed!

There have been days of violence towards siblings, verbal abuse towards siblings and Dennis and I, running away episodes, depressed days where we were scared to leave him alone... not pretty days to say the least. This last week has been one of those kind of weeks...
Monday he left school in fine moods, nothing happened on the bus (so we are told), the kids all came home, had a quick talk with me about what needs to be done for chores in the barn, and away they went ...
10 minutes later I recieved a text from Josh that Sam and Isaac were fighting and I was needed. Out I went to help. They were not fighting anymore and when I asked what was going on, Sam  proceeded to punch Ike in the chest and then the two of them counldnt really say what started it all. Then Sam suddenly walked away to the house where he packed a bag and was leaving.

No one understands him, we dont 'get' anything and he was outta here. We tried reasoning with him, telling him that if he was determined to leave he needed to call CFS and let them know he wants out. He yelled about it all and left ...
again
no meds, no wallet with ID, no medic alert bracelet (his broke last week and we are waiting for a new one), he doesnt have a cell phone, no money, no clothes.... nothing
so off he went and since we didnt know what to do anymore we called CFS and they directed us to call the RCMP. They said they could do nothing for us unless we want to report he was a danger to himself "so just follow him and keep him safe"
... so that is what we did. We were able to get him to talk to us for a few minutes in the van to learn
 his plan was to walk to Alberta to see a girl he met 2-3 years ago at cadet camp that he has been talking with on the phone for the last few months.  Then he got verbally abusive to me again and I told him to leave the van and we would continue to follow him.
 He got out and turned for home.

I am sorry but if this is typical teen behaviour then every other teen I have worked with are not 'normal'.
I did more research about the med Keppra he is on and this is what I found: (what Sam experiences are all in bold red)

KEPPRA

Common Side Effects

• sleepiness
• loss of strength and energy
• dizziness
• anxiety
• nervousness
• irritability
• other mood changes

Serious Side Effects

• decreased ability to cope with daily life events
• depression
• thoughts of suicide
• severe anxiety, agitation, or confused thought

VAL PROIC ACID

Common Side Effects

• tiredness (sometimes with slower thinking)
• dizziness
• upset stomach
• vomiting
• tremor (shaking of the hands or other parts of the body
• hair loss
• weight gain
• changes in behavior (depression in adults, irritability in children)

Serious Side Effects

• weakness, sluggishness, swelling of the face, loss of appetite, vomiting, or yellowish eyes or skin, especially in a child under 2 years of age (possible liver failure)
• pain in the abdomen, upset stomach, vomiting, or loss of appetite (possible disease of the pancreas)
• easy bruising, nosebleed, or other abnormal bleeding (problems with clotting)

I just wonder how many side effects does a person have to exhibit before they will look seriously at possibly changing the meds?! Sam has experienced all of this since the beginning of the seizure meds and now it is becoming increasingly worse.

Dennis apoke with Dr. A (neuro)  yesterday and explained everything to him and next week Sam will be starting to be removed from Keppra and on to CLOBAZAM for 6 months and then they will put him on Mylosine after that. So we can expect seizures and Sam is not to go for his learners permit (not a major thing right now) so we will see how that goes.

I also spoke with our family doc yesterday (Dr.T) and he says it is a combo of 4 things: teen years, meds, head injury and me...

yes me... I am caring too much and I need him to be a kid... no kidding!? really!? I am to let him go out and be a teen!? who knew!?  Sam has a busy social life! He is busy with cadets and does things with friends, visits with family (cousins and grandparents etc). He doesnt go out and party or even go to the movies too often but that is because it is a $$ issue and a distance thing! We have 4 kids to support and run after, sometimes there is no money to hand out so they can have everything they want. We encourage all our kids to get out and go hang with friends, but they choose not too some days so do we force them?!

I am so tired of people and doctors telling me that I need let him be a teen -- WTF do they think we are doing!? It is hard to get him to go to a friends house if they dont invite him or they dont except invites to our house. how do others know what happens in our house? do others know that we try to get the boys to go out but they choose not too.

It is one of those damned if I do and damned if I dont things again. The doctors (and other helpful people) tell us to do things, so we do it, then we are wrong or they ignore what we say is happening. Or if we let Sam be a teen and something happens it is "why did you not do this" (because you told us not too) or "why did you do this" (because you told us too) or if we GASP try to do it another (aka- think for ourselves) we get "what!?" 

I agree with my friend Marianne who says that the doctors are just 'practicing" medicine... but i beleive they need to 'practice' listening to the patient and caregivers just as much (and as fast) as they are ready to prescribe drugs....

so not a good day...

It sure feels lately like we have ben having more ‘off’ days than ‘on’... and not just with Sam. 

Everyone seems to be out of sorts or just not themselves... and I for one am exhausted. 

Between the medicine side effects and the brain injuries causing issues to teen drama and ‘relationships’  to medical problems am ready to jump ship and head for shore.

Yesterday I took Isaac to have his hearing tested and it seems that (by the test results anyway) his hearing is that of a 90yr old man in one ear. 

Isaac is 14... this is not good.

We are going to be going to another audiologist and according to the man we spoke to yesterday, he assumes it will be sooner rather than later due to his age and the test results. So off we will go to more appointments with specialists.

Sam has been forgetting meds,  missing classes at school (and not while he has been at home) and then this morning when we called him on staying up late texting on his iPod (which is NOT supposed to be in his room at night) he decided to go back to bed this morning and then miss school some more. He says we treat him like a child and when we give him the chance to act mature, he drops the ball and blames us. We are on a vicious treadmill right now with his attitudes. We are basically damned if we do and damned if we don’t. We make rule changes and he agrees with them, he makes new rules and we agree to them, then he does whatever he wants. 

typical teen behaviour.... ya ya ya

I know... but there is a pattern to this behaviour. Sam gets tired and he forgets his meds. He forgets his meds and he cops an attitude. We remind him to take his meds we are treating him like a child. We remind him of the doctors suggestions and we are babying him. We DON’T remind him, we don’t care. We give him an iPod to use with alarms to remind him to take meds, exercise, do things for himself... he turns the volume off and uses it only to texts, email and do other things. He texts inappropriate things to people, he is up all hours of the night .... which comes back around to being tired, missing meds, getting grouchy and irritable -- this results in missed school and classes, falling behind and taking a full year to do courses that should only take 1/2 a yr. 

He claims he wants to go to ‘regular’ classes which would be fine, except he has dropped the ball on this, where he could have proven to the school and teachers that he was ready for full regular classes (by going to every class, working diligently, getting his work done and staying caught up) he chose to fight it and skip classes, not hand in work, take his time with assignments the school will mostly likely say no to his request -- as he has not proven that he is able to handle regular classes. 

Which will bring us back around to being treated like a child, missing classes, etc, etc, etc... tiredness, skipped meds, etc, etc ... which will inevitably bring us to another day (if we are lucky only one!) where he has had enough of it all (as his brain convinces him that we are all against him and trying to keep him here) and want to go. 

go anywhere

anywhere but here...

There is drama also with Josh and his gf... I cant even get into that...

I am so emotionally drained right now after this morning with kids then I get a phone call from someone in Dauphin where we thot we might be able to get some psychological and emotional help for Sam. We were told that Dauphin is not the place for us and I was given a few other numbers to try.  I am so tired of everyone passing us onto someone else. There MUST be somewhere for us to go with these issues! 


I am looking into a neuro feedback program for Sam-- but it is in Edmonton, it is costly and if he is not onboard... why bother!? To be honest I am scared to call in case I do and they say "there is nothing we can do for him here either". I am jsut trying to find somewhere for him to get help with his brain injury! Why is this so damn hard!? Good grief!  

How many phone calls do I have to make? How many people do I have to tell our story too and relive July 28, 2008 every damn time!? Then explain about Josh...and Isaac & Hannah!? I have to laugh when they say (cuz they all do) “and what about YOU Jodi!?” 

I want to say “WHAT about me!?” If I could get doctors to listen to me and get Sam some proper help maybe.... just MAYBE I COULD find time for me!

so not a good day today...

who to believe!?

127/89 his blood pressure is high and now do this.... Dr. A

115/70 his blood pressure if fine  so don't worry about it .... Dr.T

His med levels are high... toxicly so... 134 & 136 and they should be between 50-100, so something needs to be done so go see Dr.A ... Dr.T

No need to worry, his med levels spiked so no changes for now and we will see you in 2-3 months  (btw no changes in meds for 2 years AND we will let Sam go for his learners license) ... Dr.A

OH! that is Typcial teenage life, they sleep a lot! We do not concern ourselves with the tiredness, he needs to exercise and eat and he will be fine-- it is not the medicine really, he is out of shape and will feel better after a month of exericse ... Dr.A

WHAT!? Med levels DO NOT spike and I am NOT confortable with this.  He is tired because of the meds and we need to work on his quality of life and find the best solution with the lowest possible doseage of meds. Go for more blood work and I will phone Dr.A and we will discuss this then I will call you .... Dr.T

This has been our last 2 weeks. One doctor telling us one thing, the other telling us the COMPLETE opposite. I feel like my head has been done in! I have been telling doctors since Sam was diagnosed with epilepsy last year that something is not right. NO teenager goes to bed at 8.30 VOLUNTARILY unless there is something not normal. Dr.T said yesterday that the reason why Sam is so tired could be because his levels are so high and at toxic levels.
The reason why he has trouble with writing at school or his eye sight some days is because he is at TOXIC levels....
I am so frustrated because they tell me to let them know when this or that happens and when I DO tell them I get brushed off. I know my son, I know teenage behaviour, I know that this is no jiving! I am tired of being told that it is all 'normal' when I know it isnt...

The trick now is to find the right doctor to listen to us!

Dr.A wants to wait 2 years with Sam on these levels (the val proic can absolutely wreck his liver over a long period) and then start to 'play' with the levels. But in 2 years we will be transferring to the adult side of things and then it gets worse! The whole reason we were sent backwards to  peds was because they could do stuff for us NOW! And now this doctor wants to wait. When I tried to point this out to him when we were there there, he shut me down fast but then never answered the question.
We have also been told by a teacher that they have noticed Sams eyes rolling and fluttering and when they look back it has stopped-- so they arent sure if they acually saw anything. So when I tell the doctors this (because they asked for me to record it and let themknow right away) they bruch me off and say "ya well it wasnt a grand mal. So .... no worries" SO why did you want me to track it? Sam's friends have noticed he has periods of 'spacing out' and yet when I tell the doctors this they say nothing except sign off on the paper work for him to get his learners driving permit!

I am so mad right now.... I am sick of doctors and their breaucractic crap it isnt funny. There might be kids worse off than Sam but that doesnt mean that they write him off! Our son is just as important as any other kid!

I am going to fight for my boy from now until the day I am with the Lord... so watch out doctors, I am on the war path now!

what the!?!

I am sitting here in Winnipegs Ronald McDonald house watching Sam sleep. He did not get much of it last night. Or the night before or before that...

let me back up this train of rambling a bit....

ON Wednesday last week I called our Neurologist office to ask a few questions about the side effects of the meds that Sam was on and how they were ... ummmm.... a bit extreme. All we were wanting was an assurance that they were normal or maybe that there was a possiblity that it was also more absent seizure activity. What we got was a call about 45 minutes later from his nurse saying that he wanted us to get into the seizure clinic (EMU) the following week. This was followed by a phone call on late Friday afternoon to be in Winnipeg at the Health Science Centre MONDAY morning by noon. We would be staying for 5-7days of monitoring so be prepared...

We were a bit excited by this as we thot maybe it was more serious than we had thot. So Friday the call came (on our way to Josh and Ikes football game), Saturday AND Sunday brought butchering the cow, canning 57 qt and 30 pt of meat, bagging 100+lbs of burger, cutting a truck load of wood for cadets, cleaning the house, doing all ours and Sams laundry, baking buns, cookies, muffins, a square all for lunches this week, dinners and packing. Monday was a stop at the school to get work in order to stay caught up with this week and then the 3 hour drive to Wpg. 

We arrived at the HSC by 11.50am, were admitted and taken to the EMUclinic, where we sat for 45 minutes, then proceeded to a room where Sam was ‘wired up’ with electrodes to hook into a machine to read his seizure activity. From there we were moved to the ward -- room GD-242 -- where he was settled in and FINALLY at 2.30 (after I asked about his meds) he was given his meds, THEN I went to the cafeteria to get him some food. We spoke with the neuro and what his plans were for Sam ove rthe next few days and all was good. His dinner was brought to him at 6ish, and at 8.30 it was time for me to leave and .... no meds... again I inquired if they didnt have them ready yet I would give him the ones from our ‘stash’... but I was told they WERE in but he would be given them at 10pm.... 

This morning I got to the hospital at 10.30 and he had eaten ‘some’ breakfast (not enough in his words) and had not had his val proic acid yet... (he usually takes them at 7am!!!!!) BUT he HAD had his keppra... the reasons behind this were because they wanted to do a blood level first --- ok .... but Sam said they did that at 6 am.... he got his val proic at 10.45.

By 11.30 Sam was starving so I went and got him a doughnut (a rare treat these days), a fruit cup and a small coffee. Thinking his lunch would be soon it would be a bit of nibbly to have for the day. Well lunch did not come until 1pm...

Sam was absolutely ravenous by then! And as he is finally eating his lunch in comes the neurologist to inform me that we have been “KICKED OUT” since Sam is only 15years old and NOT 18.... WHAT!?!?!?!

The doctor was very apologetic and blah blah blah... proceeds to tell me that there IS seizure activity going on  and that makes alot of sense since there IS the bullet still there and blah blah blah.... then tells me that they DO have 24hours of monitoring to look at. And they are going to slowly ween him off of the keppra and onto Topamax.... more blah blah blah and more blah blah blah.... Sam then asks if he can play football and is told basically “no and probably never will because of the epilepsy”.... bit more of blah blah blah and ...

Then he leaves... I sat there dumbfounded and Sam close to tears of the new news on football. I left to call dennis... then I got my mad on and went to the nurses station where I continued to hear from 2-3 nurses FROM THE EMU CLINIC that this is all the neurologists fault and he should have known better and blah blah blah... I asked if no had read his chart first and saw his birthdate and did the math!? No because it is up to the doctor.... OMG! Seriously!?! Pass the buck just a bit more now ladies! Even when I tried to explain that it was NOT ONLY the doctors fault that SOMEONE at SOMETIME should have done the math to realize that this kid is NOT 18 and said SOMETHING to SOMEONE before we travelled 3 hours to get here! But nope all they kept saying was it was ALL the doctors fault.... sigh

I packed up all of Sams things and waited for them to get all the stuff off of him. I also (not in the nicest way either) pointed out that now he has had 2 days with little sleep (one night of worrying about going there and one while in the hospital), all his eating is off, his meds have been messed with AND a new med introduced...and I am expected to take him home...

3 hours travelling...

EXPECT SEIZURES now people! ANd because we are at a point with his seizures that he does not go to the hospital the seizure stress is all on Sam and me. He will seize and I will watch and deal with it and he will deal with the after effects of it AND his newly formed record of 4 weeks seizure free will be gone and we are back to square one -- waiting .... nice... thanks a lot! 

We came back here to the Ronald McDonald house to pack up and calm down and while I was talking to our Epilepsy advocate Sam fell asleep on the bed. Thankfully we were prepared to stay here in WPg for 5-7days, so we have the room. But we will stay tonight and start for home fresh in the morning. And if he seizes... maybe I will take him to the hospital and sit and wait for someone to do something....

When I get home I will be on the phone to our MLA and MP and next week after the elections I will be on the phone to the Minister of Health to explain this story to them too. I will be making sure that this doesnt happen again to US or ANYONE else! 

Right now tho I will sit, have my coffee in my room (not usually allowed in the House but they are letting me stay with Sam incase he seizes) and I will try to relax and read my book.... or maybe I will start some phoning...

Land of Confusion...

After yesterdays trip into the city, I can say I am now totally confused about ....

well...

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school  so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything... and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said "YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!" (side note -- if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog -- **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started.  They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read ... we left for our doctor appt. with the ped....

That where things went a bit ... out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist -- these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see -- names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam's partial seizures or helping us to get things set on a more seizure free path-- other than taking his meds. (which are now up'd) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands...but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated... but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can't say anything about it as I am not sure what it will all do or not do for us...

Frustration

Don't you just hate it when you are treated like you are not 'intelligent' enough by someone, or that you do not know what it is you are talking about--especially when you not only KNOW but LIVE the very thing you ARE talking about!?

I mean when I tell someone about TBI issues that are happening to my family members and in my house I would think that the person I am talking to would understand that I KNOW what I am talking about! I am not Joe Public that maybe has only HEARD of  TBI, I am not a person that is on the outside of it looking in... I am LIVING it every freaking day!

 And not only with one survivor but THREE! Yes people, three!  I have done so much research and living with a lot of issues that survivors deal with! I am not an IDIOT about this stuff! DOnt try to demean me or my observations! I know when things change and what that will mean to each survivor in my life!

I KNOW what that will mean in MY life! I know what needs to be done to try to get the person back to a normal balance -- whether it be a change in physical position OR mental position OR more sleep OR a change in what is normal for other people without a TBI!

On a daily basis here I deal with 2 survivors and I know each of their moods and idiosyncrasies. I know that one is a teen and that he will deal with normal teen issues BUT he also has 3 small metal fragments imbedded in his brain that have severed nerves and destroyed some normal brain patterns-- but I LIVE with him and know the difference between 'normal' teen behaviour and TBI behaviour!!! Sadly, they are so closely linked some days that a lot of people will tell me that  n"oh its normal for a 14yr to do that!' but please be rest assured that there is more to it -- that there is a distinct difference that maybe can only be seen to be understood.

Sam has been sundowning this week and it is VERY noticeable here at home. He is such an Oscar Awarding Actor at school that no one sees it.  But rest assured that when I tell you that there is something wrong then PLEASE believe me and don't make me feel like a schmuck and try to belittle my observations-- not just mine but Dennis' too! Please don't think that by saying it is 'normal' teen behaviour that you are in any way making me feel better.

You make me feel stupid, insignificant and useless.  I know you are the professional but I am the MOM!

I am the WIFE and I am the DAUGHTER!

I am the person that looks after them.

 I am the person that looks for methods to help them to get as close as possible to the person they were BEFORE their TBI.

 I am the person that sits with them and listens to EVERY word that they say and DON'T say about what is happening in their heads!

 I am the one that holds their hand, cries with them and for them!

 I am the one that loves them TOTALLY UNCONDITIONALLY!

I loved them all BEFORE  and AFTER their injuries and I will love them for the rest of MY life!

I will be their biggest advocate when they need one.

I will just be whatever they need WHENEVER they need.

I will just be....

Please don't make  my concerns for their well-being to be small or insignificant just because YOU have  gone to school for years, have read an article on something, have letters after your name, you work with 'normal' teens or feel that you KNOW better just because.

when can i be dad...

tomorrow morning sam and i are on the road again to winnipeg for another psych eval. for him. he is not too impressed with this and this last week (all two days of it) he has been just miserable with me for the most part whenever i talk about the wpg trip.
i picked the boys(josh and sam) up from my moms yesterday and for the first hour everything was good, then the good mood stopped and the miserable, grouchy, unliveable side arrived. he was mouthy, rude, disrespectful and extremely foul mood-ed ( i know there is no word-- but nothing else would work). and it was one of those literally blindsided moods that when they hit they are totally shocking and unexpected (hence the blindsiding) and they turn the whole house on its ends. i just couldnt wait for dennis to get home from work and (being extremely honest here) was ready to ship him off to anywhere--then i looked at him and saw the fatigue. then the guilt set in... but frustration also did...how come the fatigue was 'saved' for me and not for granni?! how come i get to be the dumping ground for everyones garbage?how come even tho i am the one going to bat for them (and of course it isnt just sam here) and trying to make sure they get good times and happy memories ... i get the crap attitudes. dad gets a bit too--but i get the major brunt. makes me wish i was the dad some days!
and now i get the job of getting sam up early (6am to be on the road for 6.45), driving to winnipeg and then taking him to the doctor and keeping him on an even keel and in good spirits.

sigh