Thursday, 17 April 2014

A Great Exchange

Last week Mike had his feeding tube changed. It had been over a year since the first feeding tube was put in. When we went in October to have the tube changed, the doctor told us it was still good for another few months. Because sedation is required, and because Mike is nervous to be sedated in his condition with ALS, he wanted to wait — he wasn't going to have the procedure any earlier than necessary.

We were assured that having the tube changed was quick and easy…compared to the last procedure of having the tube placed for the first time. That was tough on Mike. We were in the hospital for a few days…recovering in Mike’s condition wasn’t easy. 

Mike’s parents and sisters, Aileen and Pat were here for that first procedure and came back for the appointment last week (they come every two to three months for a visit anyway).  Remembering the physical tole the first procedure took on Mike and the emotional tole it took on the rest of us, we were all a little tense. 

Sure enough, the procedure was pretty quick and easy. Mike has an issue with excess saliva though so when the doctor sprayed his throat with a numbing spray he immediately started to cough (clear his throat) and continued for a few hours after, but other than that he was fine. 

During the procedure, Mike’s family waited patiently in the waiting area and Elanna and I stood right outside the surgical room door. When it was over, I’m sure our collective sighs of relief could be heard throughout the ward. Mike recovered in the recovery area for a couple of hours and then we were free to go home. 

When we left, I wheeled Mike out to the waiting room where everyone rose to their feet and cheered. It was fitting to celebrate at a time like this. Mike had a big smile on his face and was so encouraged!

Speaking of celebration, this past Sunday was Palm Sunday. On Palm Sunday, Christians celebrate the triumphal entry of Jesus into Jerusalem one week before Easter. When Jesus rode into Jerusalem on a donkey, less than a week before his death by crucifixion, the celebratory crowd laid their cloaks on the road before him along with palm branches; some waved palm branches in the air.

The great crowd that had come for the festival heard that Jesus was on his way to Jerusalem. They took palm branches and went out to meet him, shouting,
“Blessed is he who comes in the name of the Lord!”
“Blessed is the king of Israel!” 
“Hosanna in the highest!” John 12:12,13

The Pastor at church titled his sermon, “The entrance of a King” and delivered a good message. I’ll admit though I didn’t catch all of it because I nodded off a few times (not because it was boring but because I hadn't had enough sleep). I was wide awake however at the end when the Pastor finished his sermon with a question. He said, “What do you need to let go of, so you can pick up a palm leaf and celebrate?”

Wow, he totally caught me off guard. I became a little emotional when I closed my eyes and saw myself with a heavy load which made it impossible to raise my palm. I thought I had let go, but apparently I picked some cares back up again. I hadn't realized my celebration/praise was impaired by burdens.

Whether its cares or worries or sin or regret or un-forgiveness, it weighs us down and keeps us from raising our palms and praising Him. 

At Easter or anytime, you can cast your cares at the foot of the cross and raise your palms and celebrate!

“Blessed is He who comes in the name of the Lord!”

                                                        Four Generations!  

A walk on a beautiful spring day!

Happy Easter Everyone!


Sunday, 6 April 2014

Perfect Timing

Madison just turned twenty. When I told my sister I was a little sad that I didn’t have any more teenagers, she looked at me like I was crazy and Michaela said, “Aunty, you still have me and Luke.” (Michaela just turned 14 and Luke will be 13 in a couple of days.) That was sweet and it made me feel better for sure. 

Even though Madison is all grown up, I still give her lots of unsolicited advice. “Madison, make sure you lock your truck.”  “Madison, don’t leave your bank card lying around.”  “Madison, call me when you get there.” “Madison, rinse that dish, clean that up, put that away, do this, don’t do that.” I’m really not a bossy person, but poor Madison, who is a little too relaxed for my liking, and somewhat disorganized, gets an ear full from me every other day. I am the youngest child as well, so I can relate…a little.

When Mike was diagnosed with ALS, we gave thanks that our children were grown - Erin was 22, Nathan was 20 and Madison was 17. The day Mike was diagnosed, Erin and Nathan went and picked Madison up from school so they could gently break the bad news to their little sister. I really appreciated it and I’m sure their bond grew stronger that day.

As timing goes…to be given this diagnosis…it wasn’t bad. There definitely isn’t a good time to be diagnosed with a terminal illness, but the timing could have been worse. Our children were at the age where they knew their dad well and had already made a million memories with him. And Mike thought if he could see his kids well into their twenties, that would be pretty great.

I just finished reading a book called, Heavy. It’s about a young family’s first year with ALS. Todd Neva, who was diagnosed in June 2010 tells their story from his perspective with journal entries by Kristin Neva, his wife, at the end of each chapter. I really liked the two perspectives. The book was well written and easy to read. 

Unlike us, Todd and Kristin’s children were small when Todd was diagnosed with ALS. Their daughter was four and their son was just a baby. This would definitely add to the grief…I can’t imagine! Our children were raised, but Kristin would have to take care of her husband and her children and will most likely (if this illness takes the same course it has in most cases) be a single young mom…eventually.

Todd writes about the sadness of not walking his daughter down the aisle on her wedding day or teaching her how to change the oil in her car. He worries that his son won’t remember much about him. That is tough for sure. Todd and Kristin have a strong faith in God so as difficult as it is, I’m sure they trust God’s timing.

In our case, Mike may not escort his daughters down the aisle on their wedding days either, but he has been to all his children’s graduations and many other special events. He has been to Erin’s class room where she works as a teacher. He has watched Nathan become a dad and do an excellent job raising his daughter so far. And he has seen Madison reach her twenties and became a fine young adult like her sister and brother. Mike thinks of it as good timing. His kids (and granddaughter) are the pride of his life and he considers himself extremely blessed to have watched his children grow into kind, compassionate, caring, productive, outstanding adults.

Nathan took Erin out to her car the other day when they were here so he could show her where the oil goes and give her other pointers under the hood. That brought Mike comfort and was a reminder to him that our children have each other. They help and support one another and always will. I’m sure this thought brings Todd Neva comfort too. His children have each other and will surely help and support each other as they grow and for the rest of their lives. I’m sure his children, like our children will also help each other keep memories of their dad alive and fresh in their minds. You hear our children often say, “Remember when dad did this or that?” Laughter usually accompanies their reminiscing…which puts a smile on Mike’s face every time.

If you have given the throne of your life to God, if you trust Him and believe He knows what’s best and does what’s best, then you have to believe His timing is right — that His timing is perfect. 

In my Amazon book review of Heavy, I said, “Heavy has made me feel a little lighter.” I could relate to so much of Neva’s story and somehow that is so encouraging.

The following is part of Kristin’s journal entry in chapter 16  from February 2010:

   …I asked my councillor if he thought it is true that God doesn’t give us more than we can handle.
   “I think that God always gives us more than we can handle,” he said. “Life’s unfair and unkind at times. The question is how do we muddle through?” 
   Since Todd’s diagnosis, I have been struggling to comprehend why God is allowing this in our lives, and why there is so much suffering in the world. In John 9, in the story of Jesus and the blind man, the disciples ask Jesus, “Who sinned, this man or his parents, that he was born blind?”
   “Neither,” Jesus replies, “But this happened so that the work of God might be displayed in his life.”
   …I can’t wrap my mind around God’s sovereignty paired with the bad things that happen in life. But maybe I don’t need to. Maybe the point of the story of the blind man is that God through His grace, can redeem any situation, and even bring out of it purpose and meaning.
   “Do you think that God planned our ALS or do you think He allowed it to happen?” I asked Todd.
   “I don’t know.” he replied. “What I do know is that there is a right way to respond.”
   Maybe we don’t need to have it all figured out, rather, we need to trust that God is in control and is working in our lives. God gives us more than we can handle, but it is not more than He can handle.

I highly recommend 'Heavy'! An excellent book!

          Mike with Leah, Nathan, Madison and Erin Dec 2013. Leah turns 5 tomorrow!

Wednesday, 26 March 2014


The sun was shining in our bedroom this morning well before I opened the blinds. Mike woke up with a smile on his face that wouldn’t quit. He always smiles when he first sees me, but this one didn’t stop…it was like he had a secret or something.

Since writing my recent blog post, Faced With Grace in which I talk about living with a lack of sleep, we have slept! It’s been great to get a full nights sleep…with just one or two interruptions.  Mike has been more comfortable and able to sleep well, so I sleep well and we both feel better. That might explain the constant smile this morning or Mike does have a secret. Nevertheless, it was the perfect way to start the day. 

                                        Out for a walk on the first day of Spring

Saturday, 15 March 2014

You Can Kiss Me Now

I wouldn’t trade the last three years with ALS for anything. I know that sounds a little crazy, but let me explain: Some women/men lose their husbands/wives suddenly. There is no warning. Like my friend’s friend who lost her husband in a work related accident. She got an unexpected call one day…just like that…he was gone. I wonder what their last words were. Did they kiss before he left for work that day? Or was he scrambling to get out the door while she scrambled eggs, packed lunches and got the kids up and ready for school? Because that’s how it is…that’s what life is like. 

Pre ALS, Mike and I were often going in different directions. He worked two jobs and I worked part time and considered raising our children my full time work. It was good, but Mike and I were like two ships passing in the night (literally because Mike worked full time nights as well as some days and afternoons). We didn’t always kiss hello and good bye and our “I love You”s were few and far between.

But one day, someone wearing a white jacket holding a clip board and a bunch of test results said to me, “You have 3 to 5 years to tell your husband how much you love him.” I got a warning. My friend’s friend didn’t. No one told her the morning of her husband’s death that she had three to five hours to tell him how much she loved him. No one told her to make sure she kissed him good bye that day before he left.

At first I thought the doctor in the white coat with the bad news was our enemy, but now I believe she was a friend; a messenger of good news. I was given three to five years to kiss Mike every morning, every night and every time I go out and come back again. I got a warning. My friend’s friend didn’t get a warning and my guess is she would tell me I’m really lucky.

One day a few weeks ago I was scrambling to get out the door. I can’t remember if I was going to teach a class or if I had an appointment but wherever I was going I was running a little late. I was gathering everything I needed for my time out and I was making sure Mike was all ready for his time with his care giver. I always make sure Mike is comfortable before I walk away and on this particular day, it took a little longer to get everything just right. Mike watched me buzz around like a bee and then just when I was ready, I could see he had something to tell me. I was hoping we could make it quick and sure enough he softly spelled it out with ease:  y,o,u,  c,a,n,  k,i,s,s,  m,e,  n,o,w.

Wow, I almost forgot. I almost forgot the most important part of my leaving. It reminds me of when I was a little girl and my grandpa would say when we were about to part ways, “You forgot something.” I would kiss his cheek and he would kiss mine. It’s a memory forever etched in my mind.

So ALS I guess, could be considered a gift. I know I might not feel that way everyday, but today I give thanks for ALS. This is the first time I have given thanks for this debilitating disease. Mike gave thanks for ALS shortly after he was diagnosed. I’ll never forget when he said thank you to God for the things he wanted and the things he didn’t want in his life like ALS. He trusted God knew what He was doing.  

I Thessalonians 5:16-17 says: Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. Another version says, This is what God wants you to do: be full of joy, never stop praying and in everything give thanks.

Our love would never have known these depths had Mike been taken away suddenly. Instead we were give three to five years to rejoice, pray and give thanks together everyday. And I wouldn’t trade it for anything!

That's a special kiss! Sometimes Leah climbs up on the arm of Mike's chair and spends some quality time with her granddad. Leah will be five years old in a few weeks.

Saturday, 8 March 2014

Every Minute Matters

Ahhh, the sounds of an NHL Hockey game…the cheering of happy fans, the familiar voices of enthusiastic commentators and the signature organ music…its all music to Mike’s ears. The National Hockey League took a three week time out for the Winter Olympics and Mike is glad the NHL is back in full swing, even though he really enjoyed watching the Olympics.

We had the Olympic games on almost all day everyday. It was exciting, it was exhilarating and it was a little nerve racking. It’s so much more than sporting events and the world’s finest athleticism, its incredible stories of determination, self sacrifice, and teamwork. We were brought to tears many times witnessing perfect performances, record breaking feats, devastating mistakes, wins, losses and extraordinary comebacks.

We will never forget the woman’s gold medal hockey game between Canada and the US. Talk about a “comeback”! Mike says it was one of the greatest comebacks in hockey history. The Canadian women were down two nothing with less than four minutes to go in the third period. Both teams playing brilliantly and the Americans surely thinking they got this one, Canada scores with only 3 minutes and 20 seconds left in the game. And then they score again with only 55 seconds left in the game. And then they score in overtime to win the game and take the gold!

It was a lesson for all of us…never give up! It was a great reminder…it’s not over until its over! It was a profound statement…every minute counts! It’s quite like how we started thinking when Mike was diagnosed with a terminal illness.

A few of the Canadian women left a note on the men’s locker room door before the men’s semi-final game against the US. In part it said, “Tonight is yours. Own the moment. We are proof that every minute matters….Earn every inch, dictate the pace and go get em!”

The men won that semi-final game 1 - 0 and went on to win the gold medal game against Sweden, 3-0. Wow, that’s great, but back to the women - how excellent of them to educate us on what a difference five minutes can make. They didn’t give up, they knew “its not over until its over” and they finished extremely well…every minute matters indeed!

It reminds me of a friend of mine — a friend who finished well. On a number of occasions throughout the course of our friendship, she had kindly declined any invitation to hear about my faith and the Lord I worshiped and followed. A week before she died, even though very ill, she still wasn’t really interested in talking about God or being prayed for. But only a few days after that, conscious but unresponsive, laying in her hospital bed waiting to escape her sickly body, she had a change of heart. 

I sat beside her and took her hand in mine. Before I said anything about God, I told her what a good wife and outstanding mother she was. I told her what a beautiful person she was inside and out. And I told her what a wonderful friend she was and how she enriched my life. 

Then I simply told her about God’s incredible love for her. How Jesus was waiting for her with open arms. How she could right there and then open the door and invite Him in… accepting Him as her Lord and Saviour. I said a prayer and told her she could pray along with me in her heart to receive forgiveness and peace. When I finished, she rubbed her thumb on the top of my hand and thanked me for coming. We spent the rest of our visit basking in God’s goodness and a couple of days later she went to be with Him. She fought hard, she finished well and every minute mattered! 

Yesterday (Mar 7) marked the 3rd anniversary of Mike’s diagnosis. I am so proud of him. Still content and still so brave, he is finishing well, but it isn’t over until its over. Every minute definitely matters, and we give thanks for each one of them.

If only I may finish the race and complete the task the Lord Jesus has given me — the task of testifying to the gospel of God’s grace. Acts 22:24

Madison and Hayley Wickenheiser played in the same hockey league last year (CIS). Wickenheiser at the University of Calgary and Madison at neighbouring University, Mount Royal.  Wickenheiser is considered the best female hockey player of all time. She has won four olympic gold medals and one silver. What a great opportunity for Madison to check Hayley and keep her from scoring any goals! 

Madison has since made the very difficult decision to leave her hockey scholarship and a team and coaches she loves and move back home to be with her family and spend what time is left with her dad. She played hockey this season with local team, The Mouse. She enjoyed playing for her old coaches and with long time friends. It's great hockey -- very competitive -- super talented players! 
Above pic - Mount Royal Cougars, below pic - Mount Royal and U of C shake hands post game.

Thursday, 27 February 2014

Faced with Grace

I come face to face with God's grace every day and even more so every night. It's rare for me and Mike to have an uninterrupted night of sleep. I can't remember the last time it happened. Some nights we are awake two or three times and some nights we are awake every hour or more. I sleep lightly, like a mother of a new born baby…on guard and ready to meet any need of the helpless little love of her life. But for over two years, my delight in responding to Mike's needs in the middle of the night has diminished.

When Mike needs something in the wee hours of the morning it's a bit of a guessing game. Maybe he needs the head of his bed raised or lowered or maybe he needs something scratched, or maybe he needs to turn over, or maybe he needs to go pee...  To find out what Mike needs, I have to turn the light on because I have to see his face to communicate with him. Even his nods lately are somewhat hard to read...was that a "yes" or a "no"? His eyes tell me the most. I run through a series of questions; sometimes I get it right away and sometimes it takes a while, and every time, Mike is patient with me. However, my patience wears thin after the second or third wakeup call.

When I get up to attend to Mike, I put on a sweater, socks and sometimes shoes so I can get a grip on the laminate floor if he wants to turn over. Waking up is one thing, but having to get up and dress is another. Getting out of my warm, cozy bed is usually the last thing I want to do and this is where I come face to face with God's grace. Sometimes I'm a little disoriented, sometimes I get frustrated, even angry almost. Not at Mike, but the situation, not even the situation, I guess its sleep deprivation. I don't say anything in my displeasure, I keep it inside. I'm sure Mike can tell though because I'm not cheerful like I am in the day. Perhaps that's normal, but I don't want to be normal. I want to serve my husband with a happy heart all the time, sleep deprived or totally rested.

God is using this experience in my life in a couple of ways. One of which is to show me another side of His grace. God is with me in the middle of the night, in the darkness just before I turn on the light. By His grace I get up once more to serve my beloved husband. God enables me. He carries me. He loves me. When I think I can't do it again, He says, "Yes you can!" "I am here and I will help you." And He does.

God is also using this experience in my life to teach me about surrender. It's easy to say, "I surrender all" to God, but is it easy to do? Jesus said in order to follow Him you have to deny yourself (Luke 9:23). Wow, that's a little beyond me. But by God's grace, He helps me make strides in that direction and in the middle of the night I am humbled and grateful every time He says, "Yes you can!"

ALS has forced Mike to surrender everything. He hasn't had a choice in surrendering but he has had a choice in how he surrenders. He has done it with such dignity. ALS has forced me to surrender a lot as well and God continues to call me to surrender it all. And He has given an excellent role model: Mike!

I can't guarantee that lack of sleep won't get the best of me, but I can guarantee that God's grace has!

"Once we are totally surrendered to God, He will work through us all the time." Oswald Chambers.

Following up on my blog post "You're Richer Than You Think" from Dec /13, Madison raised $2855 from her run (Run for Wellness) for Project Wellness. Thank you to those who donated and for all the encouragement and support! The above picture is of my dad in Malawi, Africa just last week. He accomplished a lot once again...he provided food for 200 orphans until June when the harvest comes in, a stove for the new kitchen, medicine and he had a well drilled. This is our 25th well drilled in Malawi!! My dad was named honorary chief of the village, “Chief Nyoni” which means "Bringer of Gifts"!  Check out project

Tuesday, 11 February 2014

Hold On and Let Go

Last week when I was driving Mike to his bath appointment, I looked at him through the rear view mirror and observed the content look on his face. I kept alternating my gaze between his face in the mirror and the road in front of me through the windshield. I couldn't help but smile and think how well he rolls with the punches.

People say what a difficult time we must be going through, but I don't feel like that at all. It's been difficult at times, but not necessarily a difficult time. It's been a time to grow and to learn. It's been a time to put things in proper perspective. It's a process for sure, but we are learning to hold on and let go. We let go of things in our lives that hinder and distract us like worry, fear, un-forgiveness and regret and hold on to things that enhance, beautify and bless our lives like faith, hope, and love and all the other wonderful outpourings of the Lord.

Good things come from bad things all the time. That's how God works. He redeems things.  God has done it with ALS in our lives a lot. I am constantly reminded of a popular Bible verse from the book of Romans. It goes like this: "And we know that all things work together for good for those who love God, who are called according to his purpose." Another version I really like of the same verse goes this way: "And we know that all that happens to us is working for our good if we love God and are fitting into his plans."

We all have trials in our lives...we all have troubles...some more than others...its part of life. What I have learned is that the trials in life accelerate growth and learning. And without adversity you never really grow. It's a "good" thing. For us with ALS, it's been an opportunity to not only grow more, but to know more, to love more, to give and to forgive more, to serve more and to live more.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Mike enjoys his Wednesday afternoon hot soak in the tub at the hospital. It's not necessarily for washing purposes because he has a shower almost every day; it's more for therapeutic purposes.  Mike would say it was well worth the eight month wait to get into the bathing program.

When I was gazing at the content look on Mike’s face in the rear view mirror last week, I thought about a blog post I wrote a long time ago. It’s called: Mike’s Glass is Half Full…still so true!

Here is some of that post, Mike’s Glass is Half Full from October 2011:

Today Mike said to me that there was a positive side to taking so many pills…he gets the recommended eight glasses of water a day. The guy always looks on the bright side. When the big 'horse' pill goes down sideways and he gags it back up, he says he’s fine and tries again. He never complains.

Mike’s glass is always half full. He is a positive person. When he was diagnosed with ALS on March 7th, he remained pretty hopeful that he had been misdiagnosed. When the doctor recommended that he stop working and go on long term disability, he said he could use some time off. When his right hand continued to weaken, he said, “It’s a good thing I’m left handed.” When he was unable to run anymore, he was glad he could walk. When he gave up the walks, he was thankful he could still ride his bike. When he fell off his bike and landed on his face (again) and broke his nose, he said that the accident taught him to be more careful next time. 

Mike prays that he will learn what he is supposed to learn from the very humbling experience of being diagnosed with ALS. He said that the “humbling experience” will cause him to rely more on God.

"Never try to live your life with God in any other way than His way. And His way means absolute devotion to Him. Showing no concern for the uncertainties that lie ahead is the secret of walking with Him." Oswald Chambers