It was that time again, every 3 months Travis & I attend the ALS Clinic, wondering why we invest the time and energy into a 4 hour visit with individuals who can't help us. Draining and depressing and not sure why we put ourselves through it. We tell ourselves that monitoring my breathing with all of the tests I have is worth it, but I'm not so sure. The good news is that my breathing is still within the normal range. I say "good news" as that is what will eventually cause my demise barring freak accidents such as Buddy lying on my face and suffocating me. I think I'm the only one who doesn't see it as "good news". Living with ALS, my greatest fear is full blown paralysis, which many braver than I are able to accomplish while still leading full lives. For me right now though I am in despair that while my breathing and swallowing are still normal, all I can think is "Damn, my body continues to fail me daily, I don't want to extend my life if it means being paralyzed". So good news, for me, not so much.
We met with an augmentative speech and language pathologist who did not understand why we were there as you still cannot stop me from talking. She helps with communication devices and as I have already logged hours of voice banking we were curious how to put it into application. Travis found the information helpful, thank goodness for his IT proficiency as it was all Greek to me!
My greatest challenge is continuously living in the moment and not living in fear of what is to come. In fact, I didn't think I could face life with my current daily challenges, everything I do is hard. But then so many people are able to live while suffering and do it with grace, courage and dignity. I owe it to them to continue to thrive while I still can.
We met with an augmentative speech and language pathologist who did not understand why we were there as you still cannot stop me from talking. She helps with communication devices and as I have already logged hours of voice banking we were curious how to put it into application. Travis found the information helpful, thank goodness for his IT proficiency as it was all Greek to me!
My greatest challenge is continuously living in the moment and not living in fear of what is to come. In fact, I didn't think I could face life with my current daily challenges, everything I do is hard. But then so many people are able to live while suffering and do it with grace, courage and dignity. I owe it to them to continue to thrive while I still can.
Keith making dinner!
Keith came to visit as he does every year since my diagnosis. He took me to Bowmanville to visit our family. We were able to spend time with my cousin Brad and his wife Erin and their new baby girl Brooklyn. It was difficult to take our eyes off Brooklyn, she really is a beautiful baby. I kept thinking of Don and how happy he would be for Brad, knowing as we all do, what a great dad he will make. It was great to see Brad and Erin in their home with their baby, such a loving family. Of course Wendy & Mike spoiled us with Veuve and we had a great time catching up with Sue & Wayne. Before we came home we were able to visit with Granny, who is 96 years old, and living in a nursing home, recovering from a broken pelvis from a fall. It was difficult to see her so frail, but we still managed to have a great conversation. Talk about a strong woman with character and what else can I say but gumption? I can only hope that I inherited Granny genes.
 Brooklyn Lee Anne Mytennar |  Cutie Patootie! |
Travis & I received an unexpected gift from a member of the ALS community. I was contacted by a woman in Calgary whom I have never met, who was going to attend the Gordon Lightfoot concert at the NAC in Ottawa. Her mother is living with ALS and is now unable to travel. I get that. I continue to make travel plans despite not knowing if I will be well enough, so my attitude is keep making plans until I can't! Anyways, instead of selling the tickets, she contacted the ALS Society of Canada to see if there was anyone in Ottawa in the ALS community who would appreciate the wheelchair seats! I had mentioned the concert to Travis just days before, saying how I would love to see Gordon Lightfoot as I used to play some of his songs on guitar (thanks to you Chris!). So thank you to the generosity of Sarah and her mom, Travis and I made it a date night. Special thanks to Mitch for getting us into the swanky new restaurant Riviera at last minute notice on a Saturday night! The food was delicious and Mitch spoiled us with tasty gourmet cuisine. The concert was fabulous and the music soothing and lovely. Fantastic evening with a Canadian legend.
Riviera
 |  If You Could Read My Mind |
Other great news, Travis's sister Rachel gave birth to baby Jordan after a loooong labour! Rachel you are a superstar! Congratulations Rachel, Logan, and Clayton, we wish we could be closer!
 Jordan Owen Bax |  Cousins Mikayla & Jordan |
Mom and dad signed the lease for an apartment in Ottawa! They found a beautiful spot overlooking the Ottawa River and are now in the process of selling our childhood home. A huge transition in life, however, they seem more than ready for it. They will join us in our beautiful city in February 2017.
Looking forward to spending Friday night with Travis for his 36th birthday. We are celebrating in his favourite way, PJ's & take-out!
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