Mike hasn’t stood now for a while and cracking a smile isn’t as easy as it used to be. He mouths out letters that I don’t usually understand; we mostly use the alphabet board to communicate. He doesn’t get out much—the only place Mike goes is to the hospital once a week for his hot bath and because of excessive secretions and/or constipation/gas issues, he has only gone for his bath once in the last four weeks (he has a shower almost everyday, so he doesn’t smell or anything, but he just loves the hot soak).
Basically, we take one day at a time … we are just managing the effects of ALS and it’s more like one hour at a time. It’s all about comfort and survival. Or I should say, survival and comfort. The palliative nurses and others have questioned certain things we do like the deep suctioning and I answer, “It’s all about survival.” This is “Survivor!” I’ve asked Mike a few times lately if he’s tired of this yet; he moves his head ever so slightly to the left and right to answer no.
This guy takes it all in stride and is really easy to please … I’ve been calling him “Trooper” a lot lately. Not “trooper” as in “a cavalryman or a mounted police” as merriam-webster describes it. But “trooper” the way urban dictionary puts it: “Anyone who exhibits EXTREME perseverance, fortitude, and tenacity.” Even though this trooper says he isn’t tired of it yet, it’s obvious he's very tired.
There isn’t much left for Mike to enjoy, but the best is left—family and friends! He still likes watching Judge Judy, nature shows, the history channel and of course NHL hockey, and he loves his daily massages and listening to music, but apart from that, all he has is family and friends. He lights up when his kids come through the door and when Leah’s in the house and when my parents pop in. When Elanna and Michaela (and sometimes Luke) come down to watch a show with us, I know he doesn’t care what we put on, he’s just happy to have us all around … and he usually gets a head or foot rub (or both). Pat was here again last week. She showed up unannounced . She likes to make her own way from the airport and not put anyone out. I knew she was going to show, she can’t stay away for long ... and we’re so glad!
My cousin John and wife Gail from Steinbach Manitoba came to visit us last month. John and Gail’s timing was perfect because they came shortly after my dad had surgery, so they visited with him in the hospital as well. We had a good visit and a lot of laughs. They also delivered a gift from their friends and neighbours who all got together for an “Ice Bucket Challenge” fundraiser.
Ron and Dan were here last week. Mike doesn’t use his head mouse with the Dynavox anymore so he didn’t say anything … but he enjoyed listening. He does have eye gaze and a new Dynavox though, but he just got it and needs to practice. So when Dan and Ron come again (before Christmas), hopefully Mike will be able to say everything he wanted to say this last time and more.
In October, I thought Mike might not even be here for another Christmas. He seemed pretty much finished with this place, but I think he recently got a little bit of a second wind. He's still choking and coughing and gagging and all that stuff, but seems to be a little stronger, a little more himself. Maybe it’s the recent visit from Pat and knowing she’ll be back again soon with his other sister, Aileen and his mum. Maybe the recent visits from cousins and his old buddies or the thought of another Christmas with his kids, granddaughter and the rest of us has recharged his battery a little… the love of family and friends goes a long way!
A couple of nights ago, after Mike was all tucked in and comfortable in his bed, I said, “Let’s pray.” I stood beside his bed and started to speak … I opened my mouth and without thinking, the words just came; the Spirit moved in a mighty way. I could barely keep up with the words, it was like a river of words flowed from my mouth and a river of tears flowed down my cheeks. I ended the prayer by saying, “Lord, whether we have a really short time left together, or if we have more time than we think, please prepare us to part.”
Yesterday after my class, I ran a few errands. While waiting in line at Save On Foods, a very pretty, well dressed, older woman behind me commented on the advent calendars I was holding. She commented on the nostalgic feeling the Rudolph the Red Nosed Reindeer picture on the cover of the top calendar gave her. She asked if the calendars were for my children. I told her they were for my children even though my children were grown. I told her I was also getting one for my niece, nephew and granddaughter. She told me how my granddaughter in particular will love the scene on the calendar and I told her that my 24 year old son loved and still loves ‘Rudolph the Red Nosed Reindeer’ as well.
She talked about the blessing of children and grandchildren and how magical Christmas is for the little ones. I agreed and asked if she had grandchildren. She said she didn’t have any grandchildren and her only son had passed away. Instant lump in my throat, instant tears in my eyes and I was barely able to get out the words, “I’m so sorry.”
She kept smiling and pointed to Kate Middleton on the front cover of a magazine and commented on her beauty and grace. I nodded and wiped my tears away. I paid for my advent calendars and with wet eyes I said good bye to the lady and we wished each other the happiest of holidays.
I don’t go long without getting choked up. It’s that same old sorrow and joy but more intense all the time. It’s the title of a chapter in my book … it’s a big part of my life.
On Thursday, a Facebook friend from Africa sent me this message, “Happy Thanksgiving!” When I read it I thought I’d get back to her and explain that it was Thanksgiving in the United States and that we Canadians celebrate our Thanksgiving in October … an easy mistake to make. And then I gave my head a shake and just replied, “Thank you!”
Mike's smiles are less frequent these days, not because he's unhappy, but because his muscles are weaker. Here are a couple of smiles I caught lately: a cold, sunny day above and a funny show below.
These pictures with Pat were taken late in the day, so tired Mike could only smile on the inside, and believe me Mike was smiling! Mike loves their time together and says Pat's scalp massages and neck rubs are awesome!