Saturday, 29 November 2014

Trooper

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! 






Monday, 10 November 2014

Multitasking

Hey, I’m finally back and I apologize for my absence. It’s been a bit of a whirl wind around here and while I’ve been busier than ever lately I have had no choice but to put some things on the back burner for a while, including my blog. I have been thinking about you though, my dear blog readers and feeling anxious knowing some of you will wonder how Mike is doing.

First things first, I’m happy to report that my dad has had his surgery and is recovering well and ahead of schedule. My dad had the Whipple procedure on October 20. I’ll let this quote from the Center for Pancreatic and Billary Disease website explain what the “Whipple” is: “In the Whipple operation the head of the pancreas, a portion of the bile duct, the gallbladder and the duodenum is removed. Occasionally a portion of the stomach may also be removed [In my dad’s case a portion of his stomach was removed]. After removal of these structures the remaining pancreas, bile duct and the intestine is sutured back into the intestine to direct the gastrointestinal secretions back into the gut.”

I knew my dad was a strong man—physically and maybe even more so mentally, but this experience has proven him stronger than we all realized. It takes a lot of strength, determination, perseverance and true grit to do what he has done all these years as a missionary, so we shouldn't be surprised how these qualities transfer to every area of his life. In this case he was out of the hospital in nine days, when the average person stays for about two weeks. What I noticed throughout this whole ordeal (from when he was first diagnosed with a cancerous tumour until now) is how he never focused on the operation and possible treatment needed after, he just stayed focused on his next trip to Malawi to inspect his building project and to drill the next well. My mom, his missionary partner and partner in life, is super strong as well, so they make an excellent team! My dad referred to her the other day as his “nurse”.

On Saturday, that nurse and this nurse (me and my mom) left our patients for a couple of hours and went and watched some of Michaela’s black belt test (my niece, my mom’s granddaughter). My dad is fine on his own, and Mike’s care giver was here, so we ventured out. Sounds reasonable I take off for a while right? But I hadn’t really left Mike’s side for over a week. And for weeks, maybe months, I haven’t ventured out very far or for very long. I hang around most of the time, even when Mike’s care givers are here because I do most of his tube feeds and suction. Mike’s home care givers aren’t allowed to do tube feeds or suction (I know that sounds odd, but those are the rules). He does have a nurse that comes sometimes, but she doesn’t do the deep suctioning that I do. It’s out of her scope of practice…it’s out of my scope of practice as well, but you do what you gotta do. (Thanks to Elanna for doing Mike’s tube feeds and suction the evenings Madison and I are at school)

Around the beginning of October, Mike had more phlegm than usual and his eyes were a bit goopy. I told him he was catching a cold or something. He shook his head no. I said it a few times throughout those early weeks in October, but he told me he didn’t have a cold, he said that he was becoming weaker and was having more difficulty clearing his throat. Either way, things were getting a little out of control so I increased his medication to dry up his secretions. Slowly but surely the increased medication took it’s toll on Mike and he ended up unable to take a “TC”. If you read my fairly recent post, ‘Oh Crap!’, you’ll know what I’m talking about.

Our doctor recently made a house call to listen to Mike’s lungs and he said they are clear, so that was good. The doctor suggested that Mike has a cold or allergies. Last year at the exact same time, Mike ended up in the hospital with the same symptoms. Last year though, I didn’t do the deep suctioning that I do now. I have honed my suctioning skills I guess and have managed to wrestle the phlegm right here at home. (When I say “deep” suctioning, I mean to the back of his throat, not down his throat… well, maybe a little bit down but very gently and carefully)  

Anyway, after Mike finally had a decent “TC” and when his secretions seemed to be under control, I went out with my mom to cheer for Michaela, who by the way is now a black belt. And I went out again later with the kids to Menchies for frozen yogurt. It was weird, I felt like I’d been locked up and then set free. Which was great but not really because I hate leaving my mate behind.

Mike comes first obviously and so when he needs extra attention, I drop everything. I took work off (I only teach a few fitness classes a week anyway), and I took school off … no problem, but I still had lots of work to do on my book even though I finished and submitted my manuscript at the end of September. I was able to get a little bit of work done in the day, but mostly worked at night when Mike was in bed. Some people might wonder why I would take on such a huge project while caring for my husband who needs me almost all the time. Yah, it’s  a little crazy, but I didn’t want to wait until it was too late for Mike to be part of the process and see it when it’s complete.

After submitting my manuscript to my publisher at the end of September there has been a series of tasks to do to have everything ready for typesetting which starts next week. My deadline for changes was Friday and I made a few right up until the end of the day. Nina, my editor has been so patient with me and just amazing to work with. Quickly I came to know Nina as a beautiful soul with a brilliant mind. After her first read through of my manuscript, I was so happy to read her message that said, “Yours and your husband's story brought tears to my eyes again and again, and lots of laughter too. Well done!” She told me she didn’t change any of the story, that she just made grammatical and spelling corrections and left comments for me in some places if she had a question or if she wanted me to elaborate on something etc. To me that sounded great and I thought the editing process was going to be easy…not!

Along with the editing, other tasks included: the front cover design (and I must say, Trista, the cover designer is truly gifted), back cover, author bios, acknowledgments, getting permission to use quotes, confirming Bible references and obtaining copy right information and so on. It’s been quite an adventure and a huge learning experience.

Another assignment was to get testimonies for my book. The first person I asked was local author and international speaker from Blackaby Ministries International, Dr Tom Blackaby, who  agreed to consider giving me a testimony upon reading my manuscript. Most people just want a sample of a manuscript, but Tom wanted the whole manuscript, which was impressive because I knew he was really busy because he mentioned he received my message en route to a destination somewhere in the US.

I’ve met Tom twice. The first time I met him was at Discovery Church—he spoke one Sunday when Pastor Trevor was away. I don’t know if Tom would remember, but I went right up to him and told him what a great speaker he was and how his dad’s book, (the best seller, award winner) ’Experiencing God’ changed my life. And it really did change my life! I have a number of books authored by a “Blackaby” … Tom, his dad Henry, his brother Richard. I know there are others in the Blackaby family who have authored books as well…collectively, there are many “Blackaby” books. So anyway, to have Tom agree to read my manuscript was a thrill!

About a week and a half after he told me he would read my manuscript, I received Tom’s message in reply to my request for a testimony. I was at school, so my phone was turned off, but I could see I had a message from him. I could read the first two lines which said, “I read your manuscript on the plane to Chicago. I didn’t have enough…” Well, that negative voice in my head jumped in right away and I thought, he didn’t have enough information, or maybe the book doesn’t have enough substance, or maybe he doesn’t have enough time to write a testimony (to let me down easy). But a little later when I opened the message and read it, I was so relieved and filled with joy when I read, “kleenex”…he didn’t have enough kleenex! I was so humbled and grateful for his very encouraging words to me personally and by his thoughtful and excellent testimony. Thank you Tom!

I had hoped for three testimonies in particular—one from a Christian author, one from an ALS expert and one from a world class athlete (specifically hockey) and I got all three, so I’m really happy!

I am honoured … humbled … blessed … by this whole experience! And exhausted!


“Will God ever ask you to do something you are not able to do? The answer is yes–all the time! It must be that way, for God’s glory and kingdom.” Henry Blackaby



Mike didn't make it out to trick or treat this year, but he still had spirit


The girls said trick or treating without Mike just wan't the same ... they really missed him


 Leah as the wicked witch from one of Mike's favourite movies, 'The Wizard of Oz


 Luke and Mike had matching costumes


Michaela (centre) with her friends