Tuesday, 20 January 2015

Forever You'll Stay in My Heart

Our goal as a family was to honour Mike and to bless everyone who came to his memorial service last Friday with a glimpse of Mike’s life, but the blessings fell heavy on us. For me it was like a down pour of love and support … I had no idea how blessed I was going to be. Regarding the hundreds of hugs I received, I thought Mike would be so happy because he had been unable to hug me in a very long time. It was like hug therapy.

Our dear friend and Pastor, Art Birch, started Mike’s service with some exceptionally wonderful words. I can’t remember them exactly and I hope to gain a copy of his speech, but everything he said meant so much to me and honoured Mike perfectly. Many friends and family have since expressed similar feelings. He thoughtfully spoke with such eloquence which took me back to the many years Mike and I and the kids listened, with so much respect, to his preaching at the Maple Ridge Baptist Church (he pastors at a church now in Abbotsford).

One thing Pastor Art said during his beautiful tribute was, “Mike didn’t necessarily say, ‘I love you,’  he showed it.” ... so true!

Mike wasn’t great at expressing with words how he felt, but he certainly knew how to let his actions speak louder than words. One of his mottos was, “Talk is cheap” and he liked to “walk the walk”.

A number of months ago, feeling the need to say, “I love you” to our children, Mike dictated a message to me to relay to them. With their permission, the following is part of that message:

“…My goal when you were born was to protect and take care of you, to have fun with you and to love you with all my heart. I feel I accomplished that goal to the best of my abilities. I hope you felt protected and cared for and I hope you had fun with me and even though I didn’t say, “I love you” much, I hope you know I loved you and of course still love you more than anything. You are the sunshine of my life, the apple of my eye, forever you'll stay in my heart. I love you Erin, I love you Nathan, I love you Madison…from dad”

Mike quoted from one of our favourite songs, You are the Sunshine of My Life by Stevie Wonder. The song was played during Mike’s memorial service and even though, by my lack of proper communication, it wasn’t the same favourite version we listened to all the time, it of course contained the same sweet words: “You are the sunshine of my life, the apple of my eye, forever you'll stay in my heart.”

Madison, Mike, Erin and Nathan (Madison's grad, June 2012)

Erin and Mike at an ALS Walk

Nathan, Mike and Leah out for a walk in our neighbourhood

Madison and Mike at a favourite park close by

I asked four pastors to speak at the service; Art, Brad, Trevor and Paul … our pastors and dear friends.

Because the memorial service fell on Mike’s birthday and because Mike hadn’t really eaten anything for over a year and a half before he passed, I asked Pastor Brad to please speak about the banquet table in heaven. 

On Sept 17, 2013, I wrote a blog post called ‘Heaven Scent’. It was about Mike’s journey of letting go of food. I called the post ‘Heaven Scent’ because after our many summer evening walks, Mike and I both agreed that heaven must smell like BBQ. The following is some of that post: 

“A few months ago, when Mike’s food selection was becoming more and more limited and we were both becoming more and more disappointed, I would visualize a banquet table laid out for him in heaven. The table covered with the most mouth-watering dishes imaginable. If we saw a big, fat, juicy hamburger advertised on TV, I’d tell him that it was going to be at his “big feast” as well.

It was very appropriate that a sermon preached this summer by Brad Warner was on this very subject. The sermon topic was on ‘hospitality’, but Brad spoke about the banquet table in heaven … I loved hearing him describe the dinner, or ‘party’ as he put it. It helped with my vision of Mike’s feast … a meal fit for a king! And of course, much better and far more important than the meal itself, is the presence of a King; Jesus Christ!”

Brad quoted Isaiah 25:6 “…the LORD will prepare for all people a feast with the best foods, a banquet with aged wines, with the best foods and the finest wines (God’s Word Translation). I say, “Cheers Mike!”

                              At Barb's Fish and Chips in Victoria, Vancouver Island
                                Mike loved fish and chips with lots of malt vinegar 

                                 Cheers! All of us including my mom at Swiss Chalet     
                                          and Mike and brother-in-law Gary below


Pastor Trevor (from Discovery Church) went next and quoted one of Erin’s Facebook posts, which says: “I know that today you are running miles and miles with that big smile on your face. One day we will run together again. Your chains are gone, you've been set free!” Trevor said, out of all the many wonderful messages on Facebook, this one stood out to him the most. 

I thought it was extremely appropriate considering I asked him to please say something about Mike leaving his earthly body behind and receiving a new, perfect one in heaven. No more illness … no more ALS! Trevor couldn’t have done a better job of portraying Mike’s new life in God’s domain … running free - no more chains! 

                                                 Mike and Leah, 2010

Pastor Paul from the Burnett Baptist church closed the service in prayer. It was very meaningful to us because by God’s grace and perfect timing, Paul walked into the emergency room of our local hospital a couple of minutes after we did on Saturday night (the night we went in - two nights before Mike passed) and prayed for Mike. He was there to visit someone else, but came right over when he saw us and offered comfort and strength through prayer and encouraging words.

                           One of my favourite pictures of us on the dike, taken
                                  shortly after Mike was diagnosed in spring 2011

I just want to say a huge thank you to these wonderful men. Mike considered them spiritual mentors and dear friends. And thanks to Brad for also taking care of many ‘behind the scenes’ details.

Thanks to Helen and the Burnett Baptist Church for providing the food and bulletins and to Sheila and the Maple Ridge Baptist Church for hosting the service and to the other ladies, including Patty who served the food and cleaned up. And thanks to Pastor Shawn for operating the sound and projector etc. And to Nolan at Garden Hill Funeral Home, Elanna and I kept saying, "He's perfect for this job!"

A huge thank you to Alana and Vid Wadhwani for putting together the pre-service slide show and the middle slide show and the short one at the end. And thanks to Erin who put together the eulogy video (she, Nathan, Madison and I were in the video) and for revising the wonderful birthday video she did for Mike last year. Because of audio issues, she had to edit the video and take some of the clips out, but if you were in the original video, Mike saw it last year on his birthday. He loved that birthday video … his grin from ear to ear and the tears in his eyes told us so!

Last but not least … from the very bottom of my heart, thank you to everyone (from near and far) who came out to our celebration of Michael’s life, and to those of you who couldn’t be there, but sent a lovely message. To those who sent cards and for all the kind and comforting words on Facebook, on my email, on my phone and on the condolence page of Mike’s obituary (gardenhill.ca). And for the food, flowers and other gifts and for the donations to Project Wellness for Mike’s memorial well. God bless you all!

                         Mike in Malawi Africa sharing cereal with two friends, 2008

Nathan and my dad, George Klassen are leaving for Malawi on January 30 and will be drilling two wells and checking in on a building project already in progress (the trip to Malawi was already planned before Mike passed away). One well will be drilled in Mike's name.

                            My dad with orphan children in Malawi a couple of years ago

                                        Nathan and Madison in Malawi, 2008 

                         Mike with Erin and friend, Lauren in hospital in Malawi, 2007

Saturday, 10 January 2015

Ultimate Finish

Like I said to my Facebook friends, my heart is broken but the love of my life is free - I couldn't be more happy!  

I’m happy for him, sad for me.

I knew Mike was going to die, but I really didn’t believe it in my heart. It shouldn’t have been such a surprise, but it was. We all agree - we knew it was coming, but still, we’re shocked.

In the minutes leading to his last breath, I complimented Mike on his remarkable feat. I told him he fought a great fight and that he couldn’t have done it more brilliantly. I told him that, together, we made an exceptional team and we did our very best. I kept saying, "Tooth and nail dear, we fought tooth and nail!" I told him it was a great honour taking care of him and such an honour to be his wife. 

At a later time, my sister Elanna and I will blog about Mike’s last days (she was with us all the way). It will bring us so much joy to relay his peaceful passing and how the Lord showed exceeding mercy and grace.

I stayed up late the day after Mike died, trying to word his obituary. I laughed and cried as I penned the following with great pleasure (I think he’d really like it):

Michael David Sands (1962 - 2015) His glass was always half full. Lessons to be learned from this wise and courageous man: Give thanks in all circumstances. Have faith, be hopeful and love deeply. Talk is cheap so walk the walk. Be generous. Never give up! And if you don’t have a napkin, just wipe your hands on your socks (he always wore knee highs). Our beloved son, brother, husband, father, granddad, uncle, nephew, cousin and friend, was called home to heaven on Monday Jan 5. His chains are gone, he’s been set free! He’s doing cartwheels now with Jesus and enjoying steak dinners and fettuccine. For four years, Mike battled ALS with brilliance and when the Lord called him to give up the fight, he humbly obeyed. A friend says, “Though his earthly body may have ‘lost the battle with ALS’, his spirit conquered it tenfold.” Mike will be dearly missed, but his lessons live on forever! A celebration of the life he leaves behind and his new life in glory will take place on Mike’s birthday, January 16 at 3:30pm at Maple Ridge Baptist Church (Wear bright colours). A memorial well will be drilled in Malawi, Africa in Mike’s name this spring, so In lieu of flowers, a donation to Project Wellness is appreciated…that was Mike’s wish. Project Wellness address: #405 – 12090 227 St. Maple Ridge, BC V2X 6J5

My dearest Michael, I love you to the moon and back compared to an ant…and far more than that. Your sweetheart, Nadine

You can view Mike's full obituary online at gardenhill.ca

Thank you everyone for your care and concern, your love and support!

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!