Friday, August 5, 2011

Life ain't always fair... sometimes it really SUCKS!

in my head I have wrote this post a dozen times today... and now I am struggling to find the words that I wanted to say...

I have cried today
I have prayed
I have ranted and raved
I have posted frustrated statuses on facebook
I have made phone calls
I have stumbled over my words
I have broke down in my car while driving
I have cried at the drug store (and probably freaked out our wonderful pharmacist)

Yesterday on the way to Brandon for a day trip of shopping and getting out of the house I got a phone call from the URIS nurse from school. It has been recommended from ESAM (Epilepsy and Seizure Assoc. Manitoba)  that Sam not play football -- until he is seen by a neurologist. The real kick in the teeth was to be told "it is for his best interest" " YOU wouldnt want him to get more seriously injured or have other issues physically".... GGGGGGGGGRRRRRRRRRRRRRRRRRRRRR

"Nooooo, really!?! His best interest!?" I wanted to yell at them WTF do you think I have been doing the last 3 years since the accident and the last 15years of his life!?! Do they seriously NOT think I know all this!?! DO they think I am not aware that he needs to be looked after physically!?!

I think that these people seriously do believe this... but I also believe that THEY have forgotten that there is another side to Sam. There is his emotional and mental side.  Survivors of brain injuries and people who live with epilepsy all have to deal with issues of depression... This summer since Samuels seizures have started he has lost his cadet summer camp (which was ALSO a paid job for 3 weeks), he is unable to go for his drivers license, he now has a LOOOOOONG list of restrictions on him at his regular cadet year -- where he has been a cadet for going on 5 years.  (one of the restrictions is no marching for him-- meanwhile he runs 3-4 miles a day ALONE...)

I totally understand that there has to be precautions and  some restrictions... but how about going on an individual basis and not a "broad-general-all-or-nothing" kind of schedule. if they were to step back and see some of these issues that they are restricting him from are not only ridiculous but they are detrimental to his health... his mental health! He is so upset by this new development ... he was really hanging on to football now with the cadets and license thing... Even tho it is just til we can have a neurologist OK it... that could be .... FOREVER...

Sam and I were at the doctor's again for a check up. Dr. N told us that he was on the phone with the HSC this week  -- with BOTH pediatric neurology and the adult neurology -- apparently even tho we have been 3 years without a neurologist and Sam will soon (in less than 6 months) be 16 years old and be able to go to the adult neurology -- they dont want him.  But it is almost the same amount of time to wait for a ped appt.... so by the time he actually GETS to the neurologist he could be viable for the adult neuro anyway!

A re-cap of our day is once again our life and Sam's is on hold as we wait for yet another doctor to 'let us' move on to the next stage ...

2 comments:

Marianne said...

That really does Suck. I feel so bad for Sam. Try and find all the things he CAN do and build on them. When one door closes God will open another. (((hugs))) to you both

Caregiver said...

Well said Jodi. Hang in three. Get a new neurologist. I have changed them several times. Here in our area the pediatric neurologist upset the families so often they either drive to NYU or Boston. Do you have to for Sam. I know you do everyday. Remember to take care of you.
I remember when I realized it could be FOREVER, and Bill is just realizing it. A daunting moment. Thinking of you and proud of you, Jodi. Ginger