Wednesday, July 1, 2015

...and...THUD ... there it is....

the other shoe that just had to fall... how many have there been anyway!?
... And how many more are there left to fall?!?

I have had to take a few days to process our news, so please bear with me as I will try to not verbally vomit here.

We took Sam to the neurologist last week and got results of his EEG and stress EEG. Dr. T was happy with the original EEG and wasn't concerned too much and ordered the stress ones just to be on the 'safe side' and those results show that Sam is still having lots of seizure activity when sleeping. It actually is e same results as when he was having full on seizure activity! 
This news was no well received by us -- especially Sam. Dr.T said right away that we need to get this under control and start seizure medication. Sam immediately said "no" and Dennis had to explain our aversion to the drugs. Thankfully, Dr.T said he totally understood once he knew the whole picture, so he is referring us to a new epileptologist in Winnipeg, who is apparently amazing and will listen to our story and what the background is.... Dr.T assured us we would like this one. He is young, and just returned from Harvard where he studied epilepsy. {side note here is while we really, really do want to trust Dr.T's affirmation of this new doc, our past experiences with doctors and Sam's care has not been the greatest track record- most tend to ignore us and our concerns and do what they want whether it is for Sam's best quality of life or not- but we will hold judgement until we meet the man.}
I also got a talking to from Dr.T telling me that I have to be strong (when he saw my tears) because Sam will need me to be... No kidding... My tears were not just for the news we got but also from frustration of having to go through this again (doctors and medications) but also for Sam - who is working to build a life, for Hannah who will be left at home to deal with this with us (in the past I had worked hard to make sure no of the other kids were lost in the shuffle of Sam's appt's and his moods - whether I was successful at it I don't know- but they always had each other... Now with only Hannah at home...who will she have if I am dropping the ball!?).

{I have always been very honest here and I will continue to be.} I had a kick in the stomach reaction when Dr.T told us about the EEG. My first thot was "I failed Sam. I missed all these signs and didn't connect the dots. I should have been better." lots of thots about what I then saw and never realized. I felt guilt about these things and then i felt guilt about me... who I am, or more accurately who I am not anymore. I have still not found me since this journey all began. I can't seem to find the time to do things I love - photography, reading, crafts. I had hoped that now I would start to find the time - with hoped of guilt from spending time on me when I should have been looking after Sam, Josh, Isaac or Hannah, or helping on the farm or doing housework, or doing a hundred other things. I felt guilt about me...
I also have the 2015 bracelets sitting here and so far I haven't had the time to address envelopes and get them out to people, between 3 birthdays, a graduation and company all in June! So a tad bit of guilt there...
We have also been dealing with the regular day to day {said with a bit of sarcasm and a bit of animosity thrown in} Brain Injury stuff.  Denial and all that comes with it, sleep deprivation and stress, anger, frustration and emotional melt downs -- I have been wanting to sit down and write more about all these things as they were occurring but then that damn guilt... and throw in lack of time... and you get this kind of a post. {in my head this is all so eloquently written and that provoking... but in reality it is emotional drivel ... i know}
Anyhow, all through this new {ok not so new - just the second act?} information all I have wanted to do is cry and scream... and lay in bed all day and ignore what I think is coming rushing at us down this road... But people don't seem to want to let me - as if my crying is a sign of weakness or that I have no faith -- again blather.. i apologize

 I found this on the internet somewhere:
I know it is all in God's hands. He knows the outcome and all that will happen in time. I just have to trust in Him ... and the doctors. 

But I can still cry right!? 


Gin G said...

If you can cry, let them flow. So sorry about Sam. It is a living nightmare with little rest for any of you. Prayers for the family.

Marianne said...

Absolutely! Cry away! Its a stress relief. You are a VERY strong person but strong people need to be hugged and be allowed to cry too. Wish I was closer to give you a much needed hug! Its exhausting but give the new doctor a chance... he might be even better than what your doctor said.