An MRI was booked. Last week we had celebrated Jason’s 29th birthday. Jason loved birthdays, not just his own, he loved everyone’s birthday in his family. He loved the anticipation of presents, who was coming?  what food were we having? and the best part, ‘the cake’. Jason’s youngest sister Kelsey is an accomplished baker and Jason loved her baked cheesecake decorated with fruit in a glaze; such an incredible taste and a work of art. Jason’s face would light right up when Kelsey placed the cake dotted with glowing candles down in front of him. It was a special time. Thankfully on this July 12th it was a good day for Jason and he was full of joy!!!! So was everybody else!!

Jason’s daily seizures, headaches and  dizziness had worsened. Jason now needed lots of help. It was very difficult. Seeing this decline caused such a sense of uneasiness that was with me everywhere and it wouldn’t go away. I was so afraid for Jason.  Jason was getting words mixed up or else couldn’t remember what things were called-not all the time but it was happening, whereas 2 months ago this was not. Jason was displaying episodes of paranoia and obsessive behaviour which was new. Jason’s questions about anything and everything were constant to me. If there was a blessing in all of this, if you could call it that, it was the fact that Jason didn’t appear to be bothered or worried about any of these issues. Of course the key was not to react and gently help him out, like ‘no big deal’, as we would recall the words for him. Jason would kind of giggle at times with us in this situation which was a welcomed lightness at this time of anguish. Jason just carried on not concerned over what was happening…this wouldn’t have been the case before. It was exactly as Jason’s Doctor had told me four or five years ago “This will be hell on you Fiona watching this, but as time goes by Jason’s realization of what is happening now, compared to before, will become less.” He was right; this is exactly what was happening.

When it was a good day for Jason, when headaches were kept at bay with Tylenol 3s and Advil and he wasn’t too dizzy, Jason would seize the day and want to make the most out of it. This meant getting off the farm and going out into civilization where there were lots of  people, cars, and stores. Places of potential danger. Stress of keeping him safe in a seizure. Jason would love to go and spend time in his favourite stores. The clerks knew us well and Jason loved to have a little chat with them. They were always so pleased to see him. This was a good feeling for Jason and for me too to see Jason in this way. Jason was so courteous to strangers, insisting on holding doors open for people no matter how he felt. When we would go out on these little trips there was nearly always a sense of humour present, some joking and laughter in the truck while ‘Mom’s Truck Tunes’ cd was playing. Jason had compiled 4 cds of our favourite rock tunes, ‘Mom’s Truck Tunes Volume 1 through to 4’. Once back home he would usually like to watch the Discovery Channel while playing on his laptop. He would order up his favourite sandwiches….a pb and j (peanut butter and jam) or a pb and b (peanut butter and banana) usually accompanied with a glass of milk and 2 Tylenol 3s.

Jason would normally then have a nap lying on the couch and that is when I would dash back out to the barns to do as much work as possible before he woke up. If Jason had not yet had a seizure that day I was very nervous about leaving him unattended. In a heightened state I would muck a stall, then run back to the house,  peek in the window to make sure he was still sleeping and if so, run back to the barn andmuck another stall and so on….

Seamus, our golden retreiver, thought this was great fun!