Sunday, 28 December 2014

Typical Mike

It’s really late and I should be going straight to sleep, but here I am in bed listening to one of my favourite Christmas songs and the sound of my beloved Michael breathing…he’s fast asleep beside me. My heart is absolutely full and my cheeks are soaking wet and I wonder how I will ever explain what’s going on inside of me. In four minutes it will be December 27, 2014, and I am grateful beyond words for another night with Mike and the sound of him breathing beside me. Every night I wonder if tonight will be the last time we say good bye.

It’s been a unique Christmas. Some things are the same, but some are very different. Mike says this will most likely be our last Christmas together here on earth so we are clinging to the moments and making this Christmas an extra special one…or I should say God is making it extra special. 

We are having a wonderful time with family, but our times alone are extraordinary. The tender moments between sessions of suctioning and uncontrollable coughing and bowel care, are sweet. Its like there’s this glow around us. Maybe it’s all the Christmas lights I put up this year because Mike loves Christmas lights, but it’s a special glow, like angels are among us. It’s been a time of last words, and everyday I wonder why I’m so lucky to be able to say good bye like this. Nothing will go unsaid.

I tell Mike everyday I love him and he gives me the look “I love you too.” A while ago, when I told Mike “I love you,” he wanted the alphabet board. I picked it up and held it right in front of him like I do many times a day. I started, “A? E? I?” He raises his eye brow slightly. “Is it I?” I ask. Yes, it’s “I”. “Is it the letter I?” I question. Yes. “Is “I” the word?” Yes. Then I move on. A? E? I? It’s “I” again. I ask if it’s the letter “I”. I get a slight nod no. J? K? L? It’s “L”. I ask Mike if it’s “love”. He raises his brows. “You love me back?” I say. He smiles, and keeps going. “I love you more than ever,” he spells. With a lump in my throat, I tell him I love him more than ever too.

When we moved out of our house two and a half years ago, I found some old home movies we never had converted to disc. I put the little tapes in a box with the intention of having them put on DVD but I forgot about them. A couple of months ago they came to my mind and I finally took them in to be transferred. The DVDs were ready just before Christmas so I wrapped them up and put them under the tree for Mike…turns out it was the best present I could have received. After Christmas dinner, we all gathered around the TV and watched one of the discs. I randomly chose one marked “new house” not knowing what we’d find…it was perfect. Mike was behind the camera most of the time. It started at our old townhouse on 236th St with our kids and some neighbour kids in the back yard. Mike also showed the empty rooms and packed boxes as we were in the middle of moving. Then Mike was at the river filming the kids and their friends floating down the river on rafts and then swimming in the swimming hole (Davison’s pool). Suddenly, at one point, Mike’s lying on an air mattress on the rock next to the water, suntanning. A random woman comes up to him and offers to put lotion on his back. All smiles and flirty, Mikes like, “Sure, what’s your name?” She replays, “Anything you want it to be,” and proceeds to rub him down with lotion. We were killing ourselves laughing. This is typical Mike Sands. There was also some footage of Mike and Erin’s trip to Toronto that summer. His mum and dad were on there along with his siblings and some nieces and nephews. It was really cool. The video ended in our back yard with little Michaela and Luke playing fetch with our dear departed dog, Isla. It was very special.

In one scene, we were at the townhouse loading up a truck and moving to our new house (old house) on Mountainview Cres. Madison is sitting in a chair in the back of the truck, I’ve got the camera in the passenger’s seat and Nathan is in the middle. Mike gets into the driver’s seat, starts the engine and begins singing, “And they loaded up the truck and they moved to Beverly…Hills that is, swimming pools, movie stars…” Again, typical Mike Sands…the wise cracks about Granny in the back, the jokes, the laughs…that was Mike! His silliness ten years ago and the laughs they produced this Christmas Day was the greatest gift he could have given me. It was a wonderful gift for everyone in the room.

When I put Mike to bed tonight, I couldn’t contain the tears (which isn’t that unusual these days), and I apologized for not appreciating him more…his silliness, his jokes, his love for making me and others laugh. I apologized for not pouring out joy in his life like he poured out in mine. All of a sudden I could only remember how unkind I was to him sometimes and how loving he was to me. I hugged him and cried and said I was sorry. I held him tight and wished I had shown more appreciation for Mike and all those light and funny moments with him.

Then Mike wanted to say something. It took a while with the alphabet board, but this is what he said, “In all the years we've been together, you’ve never judged me for the countless mistakes I’ve made.” I replied, “What mistakes?” He said, “See, you have forgotten them already.” He continued, “Heaven is about love and forgiveness—you are already there.” He went on to say, “You are the perfect girl for me…God gave me the perfect girl.”

Mike would often tell me I was the perfect girl for him, that he was so lucky to marry the girl of his dreams and how I was his “sweet heart”. But tonight I didn’t feel like a “sweet heart”, I felt a little like a failure. I wanted to go back in time and show him more love and truly embrace the joy he brought into our lives. 

I really don’t recall Mike making many mistakes and he apparently has forgotten mine—even though we both made many of course. I guess that’s what love and forgiveness is all about…its about forgetting…or at least putting the past behind you. Mike has spelled out to me a few times, “Heaven is about love and forgiveness.”

Hebrews 8:12 says, “For I will be merciful toward their iniquities, and I will remember their sins no more.” (American Standard Version).

To forgive and forget is to love with the love of Christ.

Anyway, I’m finishing this post here in my bed next to Mike. It’s weird because in three minutes it will be December 28, exactly twenty-four hours and one minute after I started writing this post. Mike is fast asleep beside me and my ears are attentive to his every breath. His breathing is like music to me and I’m so thankful for twenty-four hours and one minute more with my beloved Mike.

Merry Christmas and Happy New Year!

Mike and Me

Madison, Nathan, Mike and Erin

Michaela, Luke, Mom, Dad, Erin, Leah, Nathan and Madison

Peter, Michaela, Luke and Elanna

Sands Selfie

Saturday, 29 November 2014


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


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

Friday, 19 September 2014

For Better or Worse

The day Mike was diagnosed with ALS, he told us he didn’t want a tracheal tube to help him breath when the illness progressed to that point. A tracheal tube is invasive mechanical ventilation that requires a tracheostomy for placement of a tube into the windpipe to deliver air directly into the lungs. Every once in a while throughout this journey, I have asked Mike if he still feels the same way about this ‘thrach' topic and without hesitation, he responds yes. Its Mike’s life and as much as I want him to be with me for as long as possible, I would never try to talk him into a tracheal tube. He says it will just prolong the inevitable and he says he would rather be doing cartwheels in heaven than stuck here, completely paralyzed and breathing through a tube. I don’t blame him…I think I’d feel the same way.

Sometimes I watch Mike breath; at night mostly when he sleeps. I stare at his chest to see it rise and fall and I delight in the small movement and in the odd deep breath. Of course the inability to breath is what makes this illness fatal, so even though Mike is almost fully paralyzed, those deep breaths give me hope - there’s still time.  

This summer Mike was listed as “palliative”. While anyone diagnosed with a terminal illness is considered palliative, when Mike was “listed” as palliative, I was left with a lump in my throat for days. When you hear “palliative” you think, “dying” and while Mike is dying of ALS, we’ve never really thought of it as dying of ALS, but instead, “living with ALS”.

Palliative care is specialized medical care for people with serious/incurable illness. The focus of palliative care is to keep the patient comfortable. Doctors and nurses work with the existing medical team to provide an extra layer of support. The goal is quality of life.

When Mike was listed as palliative, we were told that doctors and nurses would come to our house to see us and offer support as needed. We were also told that Mike would start getting his medication for free and perhaps even home care for free and other “perks”. We thought, “Wow, membership has its privileges.” Had we known these things, perhaps we would have signed up earlier.

Sure enough we have had visits from the community palliative nurses and someone from the Provincial Respritory Outreach Program who brought a non-invasive breathing machine called a bi-pap and a back-up suction machine. The palliative doctor came for a visit as well. She prescribed Mike with a liquid compound medication for his excessive secretions that goes in his tube. It has helped, but lately, I must say the faucet has been running again.

Even though Mike has recently been listed as palliative we are not discouraged and even though Mike has made a firm decision regarding invasive breathing apparatus, we as a family are not discouraged…we make the best of this life with ALS however long or short it is…we are at peace…we actually feel extremely blessed.

It’s a sorry state of affairs this world. ALS is just a drop in to bucket when it comes to trials and tribulation. So many people on this planet are experiencing far worse. I can’t watch the news very often, it’s just far too upsetting. Sometimes I say, “I should have watched that Seinfeld re-run again instead of the news.” And we drag ourselves to bed feeling terrible for others and grateful to be us.

Ah, life…no one warned it was going to be so unfair, but no one promised it was going to be wonderful either and isn’t it both? Don’t we need to take the bad with the good? Mike and I embrace both because without the one, we wouldn’t have the other.

When we take our beloved partner in marriage, we take them “for better or worse,” We accept their faults for our favourite things about them. It’s a package deal…kind of like life! We accept the faults and our favourite things about it, and like Mike would say, “It’s it good to be alive!”

Other news around here: 

~ Teachers are no longer on strike here in BC, so Erin is back to work and happy to be back! And she continues to recover well from her hip replacement surgery. 

~ Leah starts Kindergarden! Following in her dad’s footsteps (and aunts and cousins), she is going into French Immersion…tres bien!

~ I have gone back to school as well. Madison and I are taking the SETA (Special Education Teacher Assistant) course. I’ve been interested in this program for a long time and am so thrilled to be taking it now with Madison! This has been a big step for me because not only is it a challenge with my time, it also kind of breaks my heart to “move forward” when I just really want to stay “here” with Mike.

~ My dad continues to wait for a surgery date to remove his cancerous tumour and is upset because he says had he known he would have to wait this long, he would have followed through with his plans to go to Malawi. He has a building project going on there, plus, he has more wells to drill. He says he’s got to get back; theres a lot more work to do. I’m sure he’ll be back before we know it. The plan is Nathan will accompany him next time.

~ The Ice Bucket challenge has come and gone, but lingers on around here…just the other day we had a surprise video from Vinroy, Mike’s best buddy from Toronto who he hasn’t seen in years. Mike and I were both in tears watching the heart warming video. Just before Vinroy gets the freezing cold bucket of ice water dumped on his head, he says, “This one’s for you Mike. If it wasn’t for you, I wouldn’t be here…you know what I mean.” Mike saved Vinroy from drowning when they were teenagers. Mike has actually saved a few people from drowning.

~ Also, while the Bucket Challenge was going strong, Jerrica, a young women from our community started a fundraiser for us on Facebook. She said it was a way for people to donate directly to a family dealing with ALS. The fundraiser is still happening and Jerrica is determined to reach three times her goal…she’s almost there. I first met Jerrica when she organized a fundraiser for Project Wellness at her high school, a few years back. It was a huge success and she kept thanking me for speaking at the event. I had to laugh because she was doing us the favour, and I kept thanking her. Thank you Jerrica once again and thank you everyone for your very kind and encouraging words and generous Ice Bucket donations! 

~ I am almost finished writing my book. In order for it to be on shelves in the spring, the manuscript is due next Friday. For weeks I’ve been saying, “It’s almost done!” But there’s still a ways to go in tying up lose ends. Everyone has been so patient with me as it’s been my primary focus for months. Thanks to Madison for all the salads, sandwiches, muffins and other meals!

Well, that list of news is a lot of good news. I’ll go to bed tonight with a happy heart and watch Mike’s chest rise and fall and delight in every breath. And I’ll give thanks to the Lord of course!

One final thing, we have lived here with Elanna and Peter and kids for over two years now (three summers) and they continue to stick by our side “for better or worse”. While Michaela and Luke are teenagers and would probably love to have their rec room space, we never hear a complaint. We never hear a complaint about anything from any of them. We are grateful beyond words for their help and support and we couldn’t do it without them!

                             Michaela, Elanna, Peter and Luke on ALS Walk day

Nathan and Leah breaking in new ball gloves

Leah catching fly balls and grounders...taking after grandma and granddad

Thursday, 28 August 2014

Ice Bucket List - by Mike Sands

In the Christmas movie Elf, Santa Claus is seen stranded in Central Park, New York. The motor on his sleigh breaks down and Buddy the elf attempts to fix it. As Buddy works on the sleigh, Santa explains to Buddy that in the good old days he would never have this problem because his sleigh was powered by the spirit of Christmas. 

Buddy’s girlfriend convinces a crowd to join her in singing Christmas carols. The group’s singing is broadcasted nationwide and soon everyone is singing, which raises the spirit of christmas to new heights. Santa’s sleigh is soon seen soaring in the sky.

I had my first symptoms of ALS four years ago this month. Over the past four years I have lost the ability to walk, talk, move most of my body and swallow properly; in essence every muscle in my body has stopped working or is on it’s way to that result. 

It’s understandable for anyone in these circumstances to be in low spirits. As I experience my body deteriorating on a daily basis I look for things to raise my spirits and the recent ALS Ice Bucket Challenge has done this. The money raised is great but what’s even more important is that the challenge is a sign that society is in our corner, ready to fight this disease with us arm in arm. 

Right now with my elevated spirits, I think I could guide Santa’s sleigh clear around the world.

It took Mike a few day to write this blog post...Ice Buck List. Below are pictures of him working on the piece, one letter at a time on his communication device, the DynaVox. His neck muscles don't last long, so his window of time to write is very limited. 

Mike's blog post's Fried Chicken Bucket List, My "R" Rated Blog and Hawaii 5-Old are the most read posts on ALS With Courage. My favourite is Ahoy Matey...and now this one! Check them out!

Friday, 22 August 2014

Pouring Buckets

They say when it rains it pours and that’s exactly what’s been happening around here lately. It’s been pouring buckets for the last few weeks, but before I say anything about the Ice Bucket Craze for ALS, I’m going to back things up to last Saturday.

I was spending a lot of time with Erin who was recovering from her hip replacement surgery, but I had come home for a little while to see Mike…I was so thankful Aileen and Pat were here for the week making it possible for me to go back and forth.

I had just left the house and was heading back to Erin’s when I got a call from my mom. I had left my parents a message earlier asking if they had heard back from the doctor regarding my dad’s recent blood test results. 

My dad had been to the doctor a few days before at the prompting of some friends who thought his skin looked a little yellow. I noticed his colour was off too, kind of like a spray tan gone bad. My dad has never had a spray tan - he’s probably never heard of a spray tan, so maybe I should have said something.

Anyway, my mom returned my call to tell me they had heard back from the doctor about the blood work and that the doctor sent my dad straight to the hospital because something wasn’t right and they wanted to do more tests. 

So then I found myself at the 7-11 by the hospital picking up snacks and a puzzle book for my dad…I felt like I was dreaming. Only a half an hour earlier, I was suctioning the back of Mike’s throat and a few hours before that, I was doing Erin’s laundry and helping her with her mobility exercises and a week before that I was sitting beside my dad out in the back yard with the rest of the family listening to him recall stories from his all-time favourite trip to Paraguay.

My dad has lots of interesting and exciting stories about his travels. I tell him he should write a book one day. He says he will when he retires from his missionary work…but he also says he’s never going to retire.

If you ask him about this particular trip to Paraguay, he reminds you again it is his very favourite. It was a trip to connect with his parent’s past and learn about the history of his ancestors and meet relatives he never knew. 

His parents, along with a large Mennonite community from Manitoba followed their hopes and dreams to a place they were told was a land of milk and honey. This was in the late1920s before my dad was born.

The milk and honey turned out to be Typhoid Fever and many members of the group died, including my dad’s aunt and sister. My grandmother was so devastated and very sick herself, she just wanted to go home. So back to Manitoba they went and started again from scratch.

My dad’s eyes light up when he talks about traveling on the beautiful Paraguayan River and visiting the land his parent’s tried to build a life on. He tells you about seeing the spot his baby sister was laid to rest, along with his aunt. He tells about the connections he made with the relatives still there, and he particularly loves to talk about the ride he took by train from Port of Casados to the Mennonite colonies.

The first thought that came to my mind when I heard my dad was in the hospital was this visit in the back yard the week prior and the feeling I got while I listened to this story I have heard many times before…the feeling was a lovely, peaceful, feeling. I just relaxed and listened and loved how excited he was to tell about it again…and yes, I wondered about his weird tan.

The weird tan was a symptom and the CT Scan revealed a tumour in his pancreas and a biopsy revealed cancer. Wow, it was a quite a blow for sure and like they say, when it rains it pours and sometimes it pours buckets…even during the most sunny month of the year.

While we waited for test results to see if the cancer had spread, we of course prayed and hoped for the best. While we prayed and hoped for the best, another prayer was being answered.

This is what I said about the recent ALS fundraiser phenomenon in an article I wrote for iVillage, a Corus Entertainment property and women’s lifestyle website based in Toronto:

“Recently, Lou Gehrig’s Disease has been in the spotlight with the viral “Ice Bucket Challenge” fundraiser -- a movement to raise awareness and funds for ALS.

I’ve been watching from the sidelines and feel like I’m cheering the underdog on to victory. In a matter of a few weeks, ALS quickly inundated our news feeds. Pro athletes, musicians, politicians, big name celebrities and others are getting in on it, including Oprah and Bill Gates. I particularly liked Charlie Sheen’s video on Monday -- instead of dumping a bucket of ice water on his head, he dumped a bucket of cash -- $10,000.

ALS gets some much-needed and well-deserved attention and I think that’s great. Finally people are hearing about it, awareness and funds are being raised and our hope for a cure has been renewed. And it puts a smile on my husband's face when he hears, ‘This one's for you’.”

I was honoured to be asked by Russell, an editor or iVillage to give my opinion on the Ice Bucket Challenge. He said he had come across my blog and was interested in my writing and our lives with ALS. The article was well received and shared on the OWN Canada (Oprah Winfrey), W Network and CNT Network Facebook pages along with many others.

So needless to say, it’s been pouring buckets…literally, and this is where we are at today: Erin in recovering well from her hip surgery and she is almost off the pain medication which has taken a bit of a toll on her stomach. It looks like my dad’s cancer is contained and he will have surgery as soon as possible to remove the tumour. And regarding the Ice Bucket Challenge, millions of dollars have been raised and perhaps even better than that, more people are becoming aware of this devastating disease. Mike’s response spelled out in a quiet whisper;  i-s-n-t  t-h-i-s  g-r-e-a-t. 

To read my article on the iVillage website, go to:

                                                   My dad in hospital last week

Erin, pre op

Erin, a few days after surgery

Fully rely on God

Monday, 4 August 2014

His Brains, My Biceps

The following is the start of a blog post I never finished from a few months ago…it’s a little dark. I’m okay now…things have a way of turning around:

I’ve been procrastinating for a while. I don’t want to write this blog post because everyone will know that I’m not as strong as I look; I’m not as strong as everyone thinks I am. I’m weak and thankfully God is strong and that’s the only reason I am where I am. I have definitely imagined myself in other places, but by God’s grace, I’m in this place…I’m in the palm of His hand.

I just thought I was dealing with a little bit of mental fatigue but it’s more than that. I call myself crazy sometimes, but my mind is just a little mixed up. I stare at the three toothbrushes and can’t decide which one is mine. I know its purple but sometimes it takes me a while to determine which one is purple…I think I’m losing it. It’s a bunch of stuff: fatigue, burn out, maybe depression. It’s the first time in my life I have ever thought, “What’s the point?”

There was more, but you get the drift. Those feelings didn’t last that long - about two months. But on a regular basis, I am mentally drained…I forget stuff all the time and I get a little mixed up. I often tell Mike that between the two of us, we make one great person…with his brains and my biceps (and the rest of my body) we really function well. Anyway, I didn’t tell anyone I definitely wasn’t functioning well during those couple of months, but my sister kept asking if I was okay and Erin was encouraging me to get away. 

I kept saying I was fine and I told Erin I’d go away for a day or two when Aunt Pat came…that was around April or the beginning of May. Pat was coming sometime in June. When she confirmed she was coming the last weekend in June, I asked Nathan to stay over night on the Saturday of that weekend. I knew between our two sisters and the kids and Mike’s regular home care support people, he would be well taken care of…even still, it’s really hard to leave him.

When I heard the workshop I was interested in attending was happening that weekend, I signed up. It was called “Inspire A Book” - a two day intensive for potential authors wanting to gain knowledge about writing and publishing a book. I was really excited about the workshop, but not about leaving Mike.

Leaving Mike for a whole day or more is agony, but not having a day away every once in a while is painful too. It’s the greatest internal tug of war I’m sure I’ll ever know. 

I’m going away again tomorrow for a couple of days. Erin is having hip replacement surgery tomorrow, so of course I will be with her for the day and I will spend the night with her at the UBC Hospital. Pat, Aileen and Sheila (Mike’s sisters and mum) are coming to help and with the help of my family as well, Mike and Erin will both be well cared for!

The Inspire A Book workshop was great…and exhausting. At the end of the first day, Julie, author and publisher of Influence Publishing (CEO), who led the workshop took me aside and told me she wanted to publish my book and handed me some paper work - a contract. She told me to read it over with Mike and she said she was really excited about my book.

After deciding to write a book and after researching everything I could about publishing, I was a little overwhelmed and then a friend told me about ‘Influence’, a company based here in Vancouver. I looked into it and thought it was perfect for me. I sent Julie a book proposal about a month before the workshop. I kept thinking, “This is really dumb…or maybe its pretty good”…I had no idea. Anyway, she liked it and I have embarked on something really exciting…telling Mike’s story in a book…our story.

What else is exciting is Erin’s new hip. The end of a long journey and the beginning of something great. And that’s a whole other story…

“The wind really was boisterous and the waves really were high, but Peter didn’t see them at first. He didn’t consider them at all; he simply recognized his Lord, stepped out in recognition of Him, and “walked on the water.” Then he began to take those things around him into account, and instantly, down he went…If you are truly recognizing your Lord, you have no business being concerned about how and where He engineers your circumstances. The things surrounding you are real, but when you look at them you are immediately overwhelmed, and even unable to recognize Jesus. Then comes His rebuke, “. . . why did you doubt?” (Matt 14:31). Let your actual circumstances be what they may, but keep recognizing Jesus, maintaining complete reliance upon Him…You do not know when His voice will come to you, but whenever the realization of God comes, even in the faintest way imaginable, be determined to recklessly abandon yourself, surrendering everything to Him. It is only through abandonment of yourself and your circumstances that you will recognize Him.” Oswald Chambers

Me and Mike and Erin and my mom at an ultimate frisbee game last weekend cheering for Nathan and Madison and all the players

We are all hoping and praying for the best possible out-come for Erin's surgery tomorrow and a for quick and complete recovery! Amen!

Thursday, 31 July 2014

Free Parking

Last week on Wednesday when I took Mike to his bath appointment at the hospital, there was no parking in the free, ten minute drop-off zone in front of the building where we usually park, so I drove around to the back. We have parked in the back a few times before, but not only is it all pay parking, there is only one wheelchair spot. Thankfully, the one wheelchair parking spot was available and for the sake of the five or ten minutes it takes me to drop Mike off, I wasn’t going to worry about paying for parking.

As I was getting Mike out of the van, I could see a couple that looked a little lost walking toward us. It was a beautiful older Indo-Canadian couple in bright coloured clothing, each walking with a cane. The man came right up to the van and asked if I knew where he could pay for parking. His accent was lovely, but his english a little rough, so there was some confusion when he also showed me the map of where in the hospital they had to go.

I pointed him in the direction of the entrance where the parking machine is and I told him we were going that way and I would help him. He and his wife started walking toward the entrance while I got Mike out of the van. We caught up to them and went in together and I showed him the parking machine. He told me his parking stall number and I punch it in along with the amount of time he wanted. I told him it was $6 and he pulled out a bunch of change from his pocket. He had a toonie and two loonies and a bunch of dimes, so I took the four bigger coins out of his hand and grabbed two loonies of my own and put the money in and gave him his ticket. He wasn’t about to accept my money and insisted I take all of his dimes. He showed me his map again of where he and his wife had to go, so we walked them to the elevator and I explained to them that they needed to go up one floor and then when they got out of the elevator, they needed to turn right and follow the hall to reception. They thanked us very much and we parted ways.

Yesterday when I picked Mike up from his bath appointment, we passed a man in the hall talking to medical personnel. I told Mike it looked like the man from last week and continued to our vehicle parked in the free, drop off zone in the front of the building. As I was wheeling Mike backwards up the ramp into the van, the tall, well dressed man with a bright blue turban appeared. He tapped his hand on the outside of one thigh a few times and with a big smile said his wife had her surgery and it went well. I said that was great and told him we were happy to hear it. He said, “Do you remember me?” I said we did; Mike nodded. He pointed to Mike and said, “What about him?” I told the man Mike was ill and that he probably wasn’t going to get better. The man came closer and with his finger pointing up, he said, “God is supreme!” Mike and I nodded in agreement. He said it again and then told us if we pray every morning and every night, everything would be alright. We nodded in agreement and the man said good bye and walked away.

As we drove off, I got a little choked up and glanced at Mike in the rear view mirror. He was already smiling at me - I smiled back and thought how God is very mysterious but He keeps it so simple at the same time.

Thursday, 24 July 2014

On Track

Mike’s sister, Moira and her husband Mike were here for a visit a few weeks ago. They came a day before Pat got here and left a few days before she did.

Moira isn’t a fan of flying and of course, I can relate…I think her aversion to flying is even stronger than mine. When I heard they were taking the train back home to Toronto, I thought, “What a great idea!”

I would love to take a train across the country. Mike and I had often spoke of doing that together someday. Not only would it be a great way to see the spectacular scenery of each province, but trains travel on the ground (so there's no fear of falling out of the sky like there is in a plane).

This is Mike’s message to Moira about a week after they left:

“So I guess you are home by now. Most people taking the train will say the rocky mountain portion is enjoyable and that the prairies are boring because they contain only vast amounts of tall wheat fields that are bland to the eye. I read a book years ago called ‘Who Has Seen the Wind’ by WO Mitchell. In the book the last chapter gives a description of the old grandma who is wheelchair bound and sits all day staring out the window at the wheat blowing in the wind. To all around her people see what appears to be a demented old lady staring into space but Mitchell's description gives the reader a different outlook at what she sees.”

Moira’s reply back:

“We just got in this afternoon as our train was 5 hours behind schedule due to a freight train that had problems ahead. Many times we stopped to allow for freight to pass, as they get priority. No problem for us, as we just sat up in the glass top area watching the scenery and talking with some of the train passengers who were very friendly. 
Although the prairies were not as spectacular as the rocky mountains, they had their own beauty, and we enjoyed watching all of it, including the forest and lake areas after that. We were allowed to get off the train occasionally in small towns along the way for some fresh air and a stretch while the train was serviced, and if you have ever seen the show 'Corner Gas', well it reminded me of that, with the size of the towns... 
The train was only really rocky one night, the rest of it was normal old fashioned train rocking, just like the olden days. You felt as though you had been on a train from the 50's, especially with some of the original bunks and refurbished end of the train lounge car with a cigar/beer table, original redone lounge chairs and decor. It was like that same place on the train in the movie ‘Double Indemnity’ with Fred MacMurray and Barbara Stanwyck, where he steps out the back door for a smoke.”  

The following is a poem written by Michaela for a school writing assignment:

My uncle is a train. Always staying on track. Determined, motivated and knows where it’s going. The outside is made of hard, strong metal yet inside is cozy and inviting. The inside has chairs lined in perfect rows which look hard but once you sit and stay a while you realize they have the softest cushions in the world. In the front the engineer shovels coal into the fire. He doesn’t stop to take a break or get tired. Instead he pushes to the limit in order to keep things running smoothly. Sometimes the train needs some helpers and sometimes it can go on its own. But one thing is certain, nothing can stop it.

Michaela, Elanna, Peter and Luke before the ALS walk in PoCo last month

Elanna, Michaela and my mom with all of us at the ALS Walk in PoCo last month

Tuesday, 8 July 2014

Keep Looking Up

Madison pointed it out to me when the three of us were out for a walk one day. She said she thought it was weird that I have a fear of flying, but I’m fascinated with air planes…every time one flies over, I look up. I’m actually not fascinated with the plane itself - I don’t care about it on the ground, its more about the machine in the sky. Madison was right, it is kind of weird. But to me, it’s just natural…I have looked up for as long as I can remember and have wondered why most people don’t.

We live about 50K away from the Vancouver International Airport, so we aren’t that close. It’s not like the planes are loud, but still you can hear them, so I look up. Sometimes I comment. I might say something about it’s colour or size or if it’s flying really high or low etc.  Sometimes I’ll pop a wheelie with Mike’s wheelchair so he can see too. And on a nice day or evening, I often say something like, “How wonderful it is to be flying into Vancouver on a day like today.” Because of course, Vancouver is beautiful…from the sky and the ground!

My dad looks up too. I’ve really noticed it lately at Nathan’s ultimate frisbee games…he and I are looking up while everyone else has their eyes on the game. My dad knows planes…he flew planes. He had a licence to fly at one time and has always had an interest in planes. While everyone else is watching the frisbee game, he and I discuss where that one might be coming from and the airline and he always knows what kind of plane it is.

I don’t really know why I have to look up when one flies over, but its like I can’t not look up.  Regardless, looking up when a plane flies by has caused me to look up thousands of times and looking up is a good thing.

I think the sky is a great reminder of how small we are and how big God is. It’s huge and it’s uncluttered, unlike some of our spaces, so it helps clear the mind and make troubles disappear for a while. The sky is also in the direction of heaven and they say its good to look where you are going, not where you have been.

Because of Mike’s neck weakness, the physiotherapist from GF Strong recently came and fitted Mike for a neck brace. Mike wasn’t crazy about the idea, but I insisted. I told him that transfers would be easier and when he stands he wouldn’t have to work so hard to lift his head up and keep his head up. I also told him van rides would be more enjoyable. Poor Mike is like a bobble head in the van when we go anywhere and I drive super slow and avoid as many bumps as possible…train tracks are the worst. 

Anyway, Mike isn’t crazy about his new neck brace. He feels a little suffocated, so he hasn’t worn it very much. He did wear it when he and I drove out to Mill Lake in  Abbotsford a couple of weeks ago to surprise Neil and Donna at the ALS Walk there (the week before, our “I Like Mike” team participated in the ALS Walk in Port Coquitlam). 

We laughed a lot on the way to Mill Lake because I was asking Mike questions about getting there and with his sun glasses on and his neck brace on, it was almost impossible for him to communicate with me. I couldn’t see his eyes and he couldn’t nod his head yes or no. I’d say, “Smile if I exit here…smile if I turn left here.” Trying not to smile, made Mike smile more, so needless to say we got a little lost but we had fun.

I have never been more in awe of Mike’s determination as I am now when I watch him lift his head. When we get him standing up and leaning against his chair, it takes all his might to lift his head. Once it’s there, he smiles. Usually it falls back a little and then he’s looking up…and smiling. Sometimes I help him lift his head and sometimes I hold his head for him, but I also like to hold his feet and support his ankles when he stands, so this can be a bit of a challenge. Last week when Pat was here, she held Mike’s head and I held his feet. Elanna and Madison and whoever else might be around also help sometimes with this juggling act…its team work at its best!

All I can say is, “Mike, you blow me away! I am so proud of you and so inspired by you! Keep looking up!”

                                                             Neil's Team

                                       Neil and Mike at the ALS walk in Abbotsford

                                  The "I Like Mike" Team at the ALS walk in Poco