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Struggles & Surprises

11/22/2016

7 Comments

 
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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.

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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.
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Brooklyn Lee Anne Mytennar
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Cutie Patootie!
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​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.
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Riviera
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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!
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Jordan Owen Bax
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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.
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Looking forward to spending Friday night with Travis for his 36th birthday.  We are celebrating in his favourite way, PJ's & take-out!
7 Comments
susan schwartz
11/23/2016 06:25:13 pm

Hi, Carol. Loving your writing. Thank you:)

Susan

Montreal

Reply
Emma Murray
11/23/2016 06:39:38 pm

Hey Carol,

I love checking in every so often to see what you've been up to and I'm glad you are still busy and enjoying life even if it is hard some days. Never let yourself think that you aren't strong and courageous because you are. Everyone has bad days where they don't feel they are as strong as they should be and you aren't any different, you are allowed those days but if I know you at all, you will pick yourself up and keep on going and that's what makes you strong and courageous.
I'm sending you my biggest hug!!
Love you

Emma

Reply
Christine Gagne
11/23/2016 07:04:13 pm

Missing you! Keep strong!

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Joanne Haddad
11/23/2016 08:37:24 pm

Dearest Carol.
I cherish every word.

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Chelsea
11/24/2016 11:39:13 am

Wonderful article Carol. Thank you, again, for being so open and candid about your experiences. A very happy (early) birthday to Travis, and congrats to your Mom and Dad about their upcoming move! Excited to be in the same city as them again :-)
xx

Reply
Heather
11/25/2016 04:11:40 am

Oof. Heavy lifting (in all turns of the phrase): big love. More soon xxoo

And if I may point out a typo: caption should read "Cutie PatootieS!"

Reply
NZ mom
11/25/2016 01:21:39 pm

Though draining and depressing, despair, demise, damn and devices yet I hear the courageous, celebratory Carol we progressively get to know, shine beautifully through. You've expressed yourself so well in this blog Carol. Blessings and hugs to you both.

Reply



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    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com