Saturday, 29 December 2012

Go Fight Win!

We had a really nice Christmas. A popular song claims that Christmas is the most wonderful time of the year, but for some it’s not. It can be a very sad and lonely time of the year for many people and my heart goes out to those who experience anything but comfort and joy at Christmas. Some people are away from the ones they dearly love, so it makes me appreciate every Christmas spent with family. I savour the moments and wish time would stand still for just a little while. Our children are grown up, but it’s still so much fun to watch them open presents and it’s neat that they are more excited about what they give than what they get. They appreciate the good food, especially the turkey and gravy and they enjoy spending time with each other and the rest of the family. There is usually lots of laughter, lots of sweet treats, stories, games and someone snoozing on the couch or in the middle of the living room floor. Having  a three year old, our granddaughter Leah around as well makes Christmas extra special and we just couldn’t ask for anything more.

It’s these special times together that can give someone with an illness the desire and determination to fight for his life and live to experience it all over again next year…and the next year and the one after that. How do I know? I know because I am watching a very courageous man do exactly that.  
To go all the way to Bulgaria to receive a medical treatment that is still fairly new and may or may not produce positive results is courageous (many people are experiencing positive results from stem cell treatment). Are motto is: we will do whatever we can and let the good Lord do the rest…and may His will be done! We are all very hopeful, but before we left for Bulgaria, Mike said if nothing else, it will be a wonderful pre-Christmas vacation to a beautiful destination.

We feel so blessed to have been able to travel across the globe to be treated by some of the very best doctors in the world. We couldn’t have done it without the help of my sister Elanna who came with us, and without the help of my parents who initiated the trip and took care of all the travel arrangement and without the help of our new friends Steven and Ruth who have the connections with the doctors in Bulgaria and are helping many people, including those with MS and ALS find medical relief through their society, The Reformed Multiple Sclerosis Society. Steven set up our appointment dates and was in touch with us the whole time leading up to our departure, answering our question and communicating with us and the doctors, taking care of all the details. We are also so thankful for the prayers and support of all our family and friends.  
Over the Christmas holidays, our good friends Audrey and Gregg arranged two friendly hockey games for their kids and their friends (some parents, including Gregg) and whoever else wanted to come out and have some fun.  Gregg was Madison’s hockey coach for many years when she played for our local female hockey club – the Barracudas. Everyone paid ten bucks (which is a great deal) to play a friendly game of scrimmage.  Audry and Gregg passed on all the proceeds to our family charity, Project Wellness, which was an added bonus. The games were great entertainment for those of us watching, but what I noticed right away was the competitiveness of all the players, especially my two (Nathan and Madison…Erin wasn’t there, but she is the same way). It was a friendly game against good friends they have known all their lives, but when the puck dropped, the game was ON! It got me thinking, it’s in the genes…our children are just like their dad; very competitive. Mike is very competitive in sports and other things in life, including illness. It’s like, “Go, Fight, Win!” almost all the time. Their attitude is; “I will not be beat!”

The doctors say it can take one to two months to observe any results from the stem cell treatment, so we will wait and see what happens. But regardless of what happens, we will not lose hope. With the advancements in medicine and the brilliant doctors out there like the ones Mike had in Bulgaria and considering that all things are possible with God, we won’t lose hope. And with the competitive spirit that Mike has, we won’t stop fighting.
Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think. Ephesians 3:20


                    Nathan with a bloody nose from a high stick at the friendly hockey game

Girl power! Sydney, Payge, Kirsten, Haley,  Madeline, Jade, Meagan, Melisa, Madison and Sabrina the goalie in front

                                                  Mike and Leah watching the game

                                                      The five of us on Christmas day

My parents with their grandkids on Christmas day - Michaela, Erin, Madison, Nathan and Luke

                                      Michaela, Elanna, Luke and Peter on Christmas day

                                                 Leah bringing gifts on Christmas Eve

                                   Mike having his cake and eating it too...in Bulgaria post op

 
                        He couldn't decide what piece of cake he wanted, so he ate all three pieces

Sunday, 16 December 2012

Communication Breakdown - by Mike Sands


Language has been around for almost as long as man has existed.  There are close to 7,000 languages worldwide.  With the large number of languages in existence coupled with the different dialects, it stands to reason that problems will arise communicating between people.  An example of this occurred in the Sudan a few years ago.  An advertiser posted on a billboard 3 pictures side by side. The first picture showed a bunch of dirty clothes. The middle picture had a box of ‘Tide’ detergent and the last picture showed the same clothes but now they were clean after using the Tide.  The problem was that in Sudan, the Sudanese people read from right to left, not left to right as we do in Canada.  This ‘miscommunication` was an obvious embarrassment to the advertisers.  Another example of where language was ‘miscommunicated` occurred in Russia during the 1800`s where Czarina Maria Fyodorovna once saved the life of a man by transposing a single comma in a warrant signed by her husband, Alexander III, which exiled a criminal to imprisonment and death in Siberia. On the bottom of the warrant the czar had written: “Pardon impossible, to be sent to Siberia.” Maria Fyodorovna changed the punctuation so that her husband’s instructions read: “Pardon, impossible to be sent to Siberia.”  By altering the document, the Czarina caused a `miscommunication` between the czar and the jailer.  The criminal was set free. Closer to home in North America, there was a comedy duo of George Burns and Gracie Allen that ran their act from the early days of vaudeville in the 1920’s until Gracie`s death in 1964.  Burns and Allen, as they were known, built their act on ‘miscommunication’ --largely on the part of the ditzy Gracie, who always misinterpreted anything straight man George said.  An example of miscommunication between the two occurred one time when George came home and noticed Gracie putting a bunch of flowers in a vase.  George asked Gracie where she got the flowers. Gracie replied, ``I went to visit Edna Rigby in the hospital, and you told me if I was to visit her in the hospital, then I should take her flowers. So I took them``.

I just arrived back from the European country of Bulgaria where I received stem cells treatment for my ALS. The treatment is not offered in Canada, as it is deemed controversial.  The procedure involved getting healthy stem cells from one section of your body (the bone at the top of my right butt cheek) and transferring the cells to an unhealthy section (my neck).  I was transferred from a gurney to an operating table.  I was placed on my side so they could drill my butt cheek.  ALS has caused severe muscle loss in my arms, and therefore laying on my side causes me great pain unless I place a pillow between my arms and my side. Being in the foreign country of Bulgaria made any conversation ripe for misinterpretation. Some of the medical staff attending me barely spoke a word of English, so I was hard pressed to figure out how I was going to communicate to them that I needed a pillow under my arm.  I said out loud to anyone who would listen, ``I need a pillow`` while pointing to under my arm. The doctor replied ``no pills while surgery``.  I thought to myself, ``what?`` I asked for a pillow and he thinks I want a pill. I then saw a stack of hospital pajamas about 5 meters away on a shelf.  I said out loud,`` I need  those pajamas``, while pointing to my underarm.  He replied, `Momma not allowed in surgery ``.  I said I   wanted pajamas and he thought I said I want my momma.  All of a sudden I could relate to women in labour who are ready to punch the medical staff in the face while in the delivery room.  But that was not how I was going to deal with this situation.  I thought, ``what would Jesus do``? Yes, now I remember; Matthew 5;29 , and Jesus sayeth; ``Turn  the  other cheek``.  So I used all my strength and turned my hips in a counter clockwise swirl (the swirl is optional, for you Seinfeld fans) lifting my left butt cheek so that it was flapping in the breeze for all to see.  Yes, Jesus would be proud; I had turned the other (butt) cheek.
Pictures from my hospital stay in Bulgaria:
This is what they serve for lunch at the hospital: a slab of feta cheese and a humungous tomato that must have been grown in and around the chernobyl nuclear plant.
One of the down sides of being in a hospital is that you have to share a room. My room mate slurped her food when she ate and talked incenssently. However, I was willing to over look all that because she was not too hard on the eyes.
After dealing with Dr. Petrov, Dr. Botov and Dr. Karlomov I was ready to deal with Dr. Smirnov.

 

Tuesday, 4 December 2012

This is my 100th blog post and I dedicate it to our family and friends. The support, the encouragement, the prayers, the concern, the comforting words, the food, the money, the gifts, the help, the fundraisers and so on; it’s all summed up in one word: LOVE. We thank you from the bottom of our hearts!

Something I have learned about myself over the last little while is that I can be quite selfish. Taking care of Mike full time has revealed selfishness in me I wouldn’t have realised otherwise. I delight in caring for Mike; he is my husband and I love him very much. But here is my question to myself, do I love me more? Ultimately, my needs are quite often first and foremost on my mind to be quite honest.
For a while I had no problem giving up a lot of things in order to take the best care of my beloved. But when the novelty of that wore off and my inner child started throwing a hissy fit because she wasn’t getting what she wanted, I had to give my inner child a ‘time out’ and ponder what love really was about.

Jesus says something about love that strikes a chord in me. In John 14:13, he says, “Greater love has no one than this; that he lay down his life for his friends.” Jesus knew what He was talking about because He knew His future and the very reason He came to earth; to suffer the cruellest death on a cross for His friends…the greatest example of love. But in this verse, Jesus wasn’t just talking about the great love He had for his friends (and all of mankind); He was telling all mankind how they must love one another as well. In the verse right before it, he says, “My command is this: Love each other as I have loved you.”
When I was a child, I didn’t need to hear the words “I love you” to know that I was loved. The actions of those caring for me, my parents and grandparents and aunts and uncles, were enough for me to know I was loved. I also found out quickly that I didn’t have to do anything to earn their love. They just loved me for who I was because I belonged to them. They put aside their needs for mine and rearranged their lives to suit me…and that’s what most parents and grandparents and aunts and uncles do.

At the age of eighteen, our son Nathan announced that he was going to be a dad. After his big announcement, he showed us how ‘big’ he was by laying down his life for his new baby. He quit the high level hockey team he was on. He shelved any plans of going to college and/or traveling. He started getting up at the crack of dawn to go to a job he didn’t like in order to raise a beautiful baby girl. His daughter Leah knows she is well loved because his life revolves around her and she is the apple of his eye.
Love is an action word. It means putting someone else before self; it’s about giving something up for another person and not expecting anything in return. When Mike first started needing help walking, and going up the stairs, and getting dressed and eating etc. we gained a new appreciation for care givers. We would quite often say, “God bless the April Cartwrights of the world!” April Cartwright is a women Mike went to elementary school with (public school as they say in Ontario) and is now a friend of both of ours on Facebook. She is a single parent of a daughter with Autism and she has had to give up everything for her daughter. Her daughter, now in her twenties needs constant care and attention and always will. Our friends, Michelle and Dave also have a daughter with special needs. Watching them with their daughter is a lesson in love. They are so patient and kind and I’m sure their daughter knows she is loved beyond measure and it’s inspiring to say the least.

My dad just returned from Malawi, Africa again where he, in his mid-seventies, still goes to feed orphans and drill wells. He and my mom, who founded Amazon Evangelism/Project Wellness (projectwellness.ca) have laid down their lives for their ‘friends’. Just like other people who have chosen to care of someone else’s child. Or like those caring for their own children, or an aging parent, or a sick friend. Or like the parents, sisters and brothers, children, nieces, nephews, aunts and uncles and friends and me, who care for a guy named Mike with ALS.
If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. 1 Corinthians 13:2

                                     Nathan and Mike with baby Leah. Leah is now three and a half.

My dad with Gerold in Malawi, Africa - check out the new Project Wellness Website at  projectwellness.ca

Tuesday, 20 November 2012

A Couple of Chickens and a Shower Chair

I don’t like clutter; I don’t like a big mess. I like space and things in their place. We have always lived in relatively small homes and Mike learned early on that I don’t like clutter. When we lived in our first one-room apartment, Mike told me a story about a guy who went to the town seer (town advisor) for advice. He told the seer, “My house is too small, what should I do?” The town seer told him to go home and bring one of his chickens in the house and come back in a week. After a week, the guy went back and said, “My house isn’t any bigger and the chicken is pooping all over the place and stinking up the joint. The town seer told him to go home and bring another chicken into his house and come back again in another week. The guy did what he was told and came back after a week. He said, “My house isn’t any bigger and it’s a mess!” The town seer sent him home and told him to bring in a pig as well; then it was another pig and then a goat and then another goat and then a cow and so on. When the guy went back he said, “Look Buddy, my house isn’t any bigger and these animals are getting on my last nerve!” The seer told him to go home and let all the animals out of his house. When the guy went back to the seer a week later, he said, “Wow, I didn’t realise my house was so big!”

Over the years, anytime I mentioned any little thing about our small house, Mike would say, “Have I ever told you the story about the guy whose house was too small?’’ I would say, “Yes!” and then he would say, “You haven’t heard this one.” And he would tell the story, but use different animals or put them in a different order or give the guy a different name etc.
On Saturday, Mike and I went to our son, Nathan’s soccer game. We took Leah with us so Nathan could go early to warm up with his team…that’s what we usually do. It was pouring rain and we were thankful that the field had some shelter, but it was a little ways away from the parking lot, so we were pretty wet when we got there. Like many soccer games we have attended over the years, we were wet and cold. We huddled under the shelter with the other fans and watched an exciting first half. Nathan was playing great and Mike wasn’t about to take his eyes off the game until half time, when he looked at me with a look of urgency and told me he had to go pee.

I grabbed our things and we ran. The washrooms weren’t that far away, but our car was closer and I keep a jar under the seat for emergencies. Unfortunately, we didn’t quite make it. I felt sick to my stomach and so defeated. My husband is a smart man. He is wise and witty and competent. He was a good athlete and a hard worker. He raised three great kids and is well respected in our community. Here he sat in his wheel chair unable to get to the bathroom on time; a very low moment in a man’s life for sure. Thank the Lord it was pouring rain and we were all soaking wet anyway.
Leah knew something was up, but we kept telling her everything was fine. I helped her in to the van and buckled her up. Then I helped Mike out of his wheel chair and to his seat, beside Leah (behind the driver’s seat where he always sits). We struggled more than usual to get Mike in his seat. At one point his leg gave out on him and he just dropped. I grabbed him with both my arms around him and with all my might I tried to lift him back up to standing. With the help of a couple of men who saw us struggling, we got Mike in his seat and we left.

If Leah wasn’t with us, I know I would have lost it. With tears rolling down my cheeks, I kept a smile on my face and kept reassuring Leah that Granddad was just fine (she couldn’t see my tears).  I was amazed at Mike’s ability to stay calm and keep his head up. He seemed just fine like I kept telling Leah.
When we got home, Leah went upstairs to visit her cousins, Michaela and Luke. Mike and I went into our new little basement suit and closed the door so we could get cleaned up. Our small space has recently gotten smaller and has started to resemble a medical supply store. We have two wheelchairs (one from the ALS Society that we have been using for a long time, but isn’t the right size and a new (used), top of the line wheel chair our friend Denise has lent us). We have two shower chairs (one the occupational therapist brought us a while ago and a nice new one on wheels that Mike’s sister, Pat got us). We also have Mike’s walker and stationary bike in the room as well as our table on wheels and all our normal household stuff. Anyway, it's been a little crowded  lately to say the least.

While we were getting cleaned up, I couldn’t stop crying…I was so upset about what happened. Mike who was fully composed and who hates to see me cry, looks around the room and then looks at me and as clear as day says, “And then the town seer said, ‘Bring in another shower chair.’”
 
 

Friday, 9 November 2012

Rescued

When our oldest daughter, Erin was in grad six she was diagnosed with Legg Perthes disease (Legg with two g’s). Legg Perthes is a condition where the supply of blood to the hip joint is interrupted causing the hip joint to collapse to some degree because of bone mass loss in the femoral head. It affects about 1 in 1200 children who are typically very active/athletic and only one in four are girls. Erin was in full leg casts and braces until the end of grade seven. During that time she had a couple of surgeries and was in a lot of pain. I remember how helpless I felt as her mother. I was afraid for her and afraid I was failing as her mom because I couldn’t stop the pain or prevent her from going through what she was going through.

Shortly after one of Erin’s surgeries, I received a card in the mail from my cousin Kim. She wrote a Bible verse in the card along with some encouraging words and I was encouraged. The Bible verse was Isaiah 41:10 which says: “So do not fear for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” I was already hanging on to this verse for dear life, but getting the card in the mail with these words was confirmation that God wanted me to know that He meant what He said and He would help me and was indeed already helping me. It was also a reminder that He was with me and would give me the strength to help Erin through a very tough time.
Many times since then I have called out to the Lord for help for different reasons. Since Mike was diagnosed with ALS, I have called out for help a lot, sometimes in desperation and God has never failed to help. Sometimes His help is subtle and sometimes it is not subtle; either way, I am always amazed at His creative ways of rescuing me and his perfect timing. And I am ever so thankful that He is always with me and that He gives me strength every day.

Cast all your cares upon the Lord, because He cares for you so much! 1Peter 5:7
 
Me and Mike with Erin at the Walk for ALS in June. Erin organized our "I Like Mike" team last year and this year, raising lots of money and rallying lots of support. Erin still suffers from the effects of Legg Perthes, but has overcome so much. She has been teaching fitness classes since she was 16 years old and recently graduated with her Education Degree and is now a French Immersion school teacher working in the schools in our community.

Sunday, 28 October 2012

In This Together

Almost every day someone asks me how Mike is doing. When I’m at the gym, or grabbing some groceries or doing some banking, someone I know asks me how Mike is doing. I usually stare at the person and smile, while I think about what I am going to say. It’s such a hard question to answer because physically Mike isn’t that well, but emotionally, spiritually and mentally, he is very well. Sometimes I say he is great, sometimes good, sometimes okay…it’s like what do I say?

So here’s the deal, Mike can’t really walk (he walks a little bit with his walker - really slow and shaky). He can’t lift his arms or move his hands and fingers on his own. He is hard to understand…his speech is really impaired and he has swallowing issues as well. He can’t scratch an itch or wipe his nose or feed himself or dress himself or shave or shower. Even so, Mike is still the most positive person I know. The only thing that frustrates him is not being able to verbally communicate the way he would like to. And yet, he laughs a lot at himself and at me. He’ll say, “Scratch my eye brow,” and I’ll say, “You want some pie now?” “We don’t have any pie.” He looks at me like what are you talking about, and then we laugh.
I am Mike’s primary caregiver and to be honest I feel honoured to do the job, but it’s a lot of work. It’s completely exhausting at times and back breaking at times as well. It’s tested my patience like nothing else. Sometimes I get frustrated but I try not to let it show. I try to be nice all the time but find that a challenge once in a while.

Taking care of a grown man leaves little room for anything else; needless to say, my life has changed dramatically. It’s just the way it is. I’m not mad or resentful or sad. If I think for a second how I’d like my life back, I shake my head and remind myself that Mike is the one with ALS. I always tell him, “We’re in this together,” but he is the one with the debilitating illness and has a good reason to be mad or resentful or sad…but he is not. He is very content and I am humbled, again and again.
Shortly after Mike was diagnosed, our dear friend Pamela gave us a very wonderful gift; a donation of four hours of home care a week. We didn’t need it right away and even when we could have used it, Mike wasn’t ready. I finally told Mike that I was ready and in August, we started getting help once a week. Voltaire is Mike’s home care nurse and is at Mike’s beck and call on Wednesdays from 10 to 2. He gives Mike his breakfast and a shave and a shower and brushes his teeth. Voltaire gives a perfect shave. He reclines Mike in his chair, lathers on the shave cream and slowly removes every hair on his face, running back and forth to the sink in the washroom to rinse his razor. Mike says Voltaire gives the best shave, and I give him the best shower. Well, that’s no surprise, when I give him a shower he calls it, “Wet t-shirt time” (I usually end up as wet as him). He also really enjoys the long head massage I give him when I shampoo his hair…I know he loves it. I scrub him from head to toe and when I’m done he always says the same thing; “I feel like a million bucks!”

Mike’s sister, Pat came out for a couple of weeks in September (right after his sister, Aileen was here to help us move Madison). Pat’s timing was perfect; she took care of Mike everyday while I packed up our house in preparation for our move. I would get Mike ready in the morning and then take him to her motel, where she spoiled him with the meals and snacks he really likes and gave him back massages. They did cross words and went for walks and watched whatever Mike wanted to watch on TV. My sister Elanna and I would walk up in the evenings and pick him up and walk him home. Elanna was also helping us out at home (and still does). She would offer to give Mike his breakfast (or dinner sometimes) so I could have a shower or make something to eat for myself. She would fold my laundry or do my dishes as well (still does). I thought to myself, with the help of three women plus Voltaire; Mike is well cared for.
Anyway, it’s come to that time for more regular home care support (probably a little overdue). The community nurse and occupational therapists have been in a few times to prepare for more home care support starting tomorrow. I must say, this is one of the hardest things we have had to do so far. I want to be there for Mike all the time, but I know it’s important for both of us to get more home care help. It’s another adjustment we have to make and I’m sure we will be fine.

                                Mike says he has a problem - two spoonfuls and only one mouth

Friday, 19 October 2012

Just One Word of Advice

While eating a piece of toast all smeared with honey the other day (and butter), I was reminded of a childhood memory. When I visited my grandparents, I would climb up on their kitchen counter and help myself to their soda crackers and cover them with honey and eat them. Sometimes I would eat them right there while sitting on the counter and sometimes I would fill a plate and take them somewhere else to eat them and then go back for more when I was done. I love honey and I loved my grandparents and on that gray, rainy day while sitting with Mike eating my toast, I got a little choked up and with one of those smiles you can’t contain, I told him about my memories of soda crackers and honey on my grandma’s kitchen counter.

This fond memory filled my heart with joy and brought a sense of thankfulness. Joy and thankfulness go hand in hand and I had to wonder if I was really experiencing those things very much lately. Sure, I thank the Lord every day for a big long list of things. I raddle that list off and quickly move on to my bigger list of requests; I have it down to a science.

I wrote in my blog post Mike’s Glass is Half Full, how Mike had said one night shortly after his diagnosis that he was thankful for everything, even the things he didn’t want. That has stuck with me and has caused me to check my own attitude. Mike wasn’t thankful for something he didn’t want, like ALS because he was going to lose the use of his arms and legs and because his speech was going to be greatly impaired and because swallowing was going to become a huge issue…of course not! What he went on to say, was that he was thankful because ALS was going to cause him to rely more on God. Mike was wise and right; here we are a year and a half later and ALS has caused us to rely more on God.

1 Thessalonians 5:16 – 18 says: Be joyful always, pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. Having ALS is a real bummer, and there are a lot of people whose circumstances are way worse. It’s like, “really?” “I have to give thanks in all circumstances?”  “And, I have to be joyful too?” “Wow, that’s a tall order.” I’m pretty sure that’s why the ‘pray continually’ is in there becasue we couldn't do it on our own, not without the help of the Lord.

When our son, Nathan first started playing hockey, Mike and I would give him advice before every game. “Keep your head up.” “Stay close to your man.” “Pass the puck.” “Encourage your team mates,” and so on. Eventually, there was nothing we could say, he did all of those things and more….better than we could expect.  So, this was the advice I started giving him, “Every time you step out on that ice, give thanks to the Lord.” Then it just became, “Give thanks”. After a while, all I had to say was; “just one word of advice Nathan” and he would say “yes mom”.  Later, I used the same “Just one word of advice” with Madison before every hockey game and I still do. An attitude of gratitude was something we taught our children would serve them well in life…in sports, in work, in relationships - in the good times and the really tough times.

The other day shortly after I finished my delicious toast and after I finished reminiscing about my grandparent’s place and the crackers and honey I ate on their kitchen counter, I checked my Facebook page and found a message from Madison. This was her message:
           She said - My tape job this weekend (a picture of her in her dressing room getting her stick ready before her game)

Friday, 5 October 2012

Rocky Mountain High

The Golden Ears Mountains are what make the town of Maple Ridge, where we live, so beautiful. I can’t imagine this place without them. When I used to drive my children to school when we lived on the other side of town, we turned off our street and headed north on Cottonwood towards Dewdney Trunk Road where we got a perfect view of the Ears. I would tell my children ”just look at those mountains!” and I would use words like, breathtaking, spectacular, amazing, gorgeous, etc. My kids would say things like, “Yah, sure mom”, or “Are you okay mom?” I think they even told me to “gear down” a few times. But turning the corner and facing them straight on really did take my breath away.

Today I got a good long look at the Golden Ears. There is no snow on them right now, but it’s only a matter of time. For ten months out of the year, there is snow on those mountains and after a fresh dusting, it’s like “Wow, did you get a look at those Ears this morning?” Without snow, they look naked…all chiselled and really strong looking. It’s like “where do you work out?” That sounds silly, but it’s true.
I have only climbed the Ears once; with Mike, Peter, friends Colleen and Chris and our niece Jenny from Toronto. (When any family members come to visit, Mike assumes they want to climb the mountain…only some have taken him up on his challenge of adventurous fun…and pain). Mike has climbed the Ears a bunch of times, including one time with our three kids and a couple of their friends. Reaching the top gets you super high in more ways than one. You’re on top of the world and it’s incredibly inspiring, to say the least.

This past weekend, Mike and I and my mom and dad drove to Calgary to visit Madison at university and watch a couple of her hockey games. It’s a really long drive; about twelve hours, but the views are spectacular. It’s mountains and valleys all the way across B.C. and a little ways into Alberta; the Rockies spit you out just before Calgary and then it starts getting flat.
I can become very emotionally charged when I am surrounded by mountains. They remind me how small I am and how great God is. They also make me think about the highs and lows of life…the mountain top experiences and the times spent in the deep valleys.

Anyway, our reading from My Utmost for His Highest in the morning on Oct 1, the day we drove home, was very fitting. This is what Oswald Chambers said:                                                                   “We have all experienced times of exaltation on the mountain, when we have seen things from God’s perspective and have wanted to stay there. But God will never allow us to stay there. The true test of our spiritual life is in exhibiting the power to descend from the mountain. If we only have the power to go up, something is wrong. It is a wonderful thing to be on the mountain with God, but a person only gets there so that he may later go down and lift up the people in the valley. We are not made for the mountains, for sunrises, or for the other beautiful attractions in life – those are simply intended to be moments of inspiration. We are made for the valley and the ordinary things of life, and this is where we have to prove our stamina and strength.”
I dedicate this blog post to our friends, Neil and Donna (who I have blogged about before). Neil had PLS for six years and was recently diagnosed with ALS. Our hearts go out to you, with love and prayers.

“In the world you will have trouble, but take courage, I have overcome the world.” John 16:33
 
Mike and Nathan - Golden Ears climb, Summer '09
 
Erin and Madison
 
Erin and Amanda
 
 

Sunday, 23 September 2012

Home Sweet Home

I would just like to start this post by saying, “I haven’t abandoned my blog…really.” I have just been extremely busy and today I can finally sit down and take a load off literally and tell my story. Yesterday, we cleared out the remainder of our things and handed over the keys of our dream house to complete strangers. The house Mike and I always said we would grow old in together now belongs to other people. But it’s okay because what I have learned is that home is where the love is, or like the Vancouver Province newspaper put it on their front page Friday; ‘Home is Where the Parents Are’.

When I picked up the paper and read the front page I told Mike it’s exactly what I was going to tell Madison. And it’s exactly how I felt for years after I moved out and got married and had children. When I went to my parent’s house, it always felt like home. It wasn’t necessarily the house they lived in; it was being wherever they were. A visit to the refrigerator and a little lie-down on their coach and some comforting and encouraging words from them and that was home.
Anyway, Mike and I moved out of our house and in with my sister and brother in law in the middle of July. They generously invited us to live in their ground level basement when Mike started struggling with the stairs in our house. We definitely procrastinated and should have left sooner, but didn’t want to leave the home we loved…we held on as long as we could (we also held on for dear life to the railing of the stairs going up and down every morning and night). We contemplated keeping our house and renting it out, but also put it on the marked to see what would happen. We put our house up for sale in June and it sold at the end of July…the day after we took it off the market. We knew it was for the best but when the subjects were removed at the end of August, it was very bitter sweet.

Madison was a little out of sorts a couple of weeks leading up to her move to university in Calgary, Alberta and it didn’t take us long to figure out why. I was sure it had something to do with moving away from home and not having her home to come home to at Christmas and for summer break. Not only that, she had to give her dog and cats away as well.
Our dog Molly, was commonly referred to as ‘Madison’s dog’ when she was being disobedient. “Madison, your dog is down the road.” “Madison, your dog is digging a hole in the front yard.” “Madison, your dog is eating the cat’s food.” When Molly was being good, she was ‘our’ dog. Well, I dropped our dog, Molly off at her new home last week. Our friends, Alison, Raj, Christian and Taylor welcomed Molly into their home with open arms (Nathan and Christain have been good friends since grade 8). The Hardies are not only friends, but relatives through marriage, so it was such a blessing and an answer to prayer that Molly stayed in the family.

A few things I’d like to say:
Even though we have had to give up our house, our dog and cats, lots of things and some hopes and dreams, I still feel like the luckiest girl in the world. We have great kids, a beautiful granddaughter, and amazing family and friends. ALS can’t take that away from us.

To my children – Home is where your parents are…wherever we are is home and you are always welcome home!
To my sister Elanna and brother-in-law, Peter and kids, Michaela and Luke – Thanks for welcoming us into your home and making your home our home…we love it here. Thanks also for renovating the bathroom to make it wheel chair accessible.

To the Hardies – Thanks for loving our dog Molly and giving her a great home. We miss her a lot already, but we are so happy for her!
One last thought: The most important things in life aren’t ‘things’ at all!


          Molly's new home sweet home...or as Raj called her Miss Molly Sands-Hardie with Alison, Christian and Raj (Taylor not pictured)
 
                                          Bye bye sweet home...it was nice knowing you
 
     Mike taking a shower in our newly renovated bathroom at my sister's house...thanks Peter and Kevin, you did a great job on the bathroom!

Monday, 3 September 2012

My, How Time Flies

Why does time have to fly? Why can’t it crawl, or walk, or stroll…or even jog? Why does it have to fly? Time flies, so I guess it has wings and what I’ve noticed as it gains momentum, it just goes faster and faster.

I remember when my children were little, mothers with older children would tell me to enjoy it while it lasts, because time flies and before you know it, they’re all grown up. I would politely say something like, “Oh really?” But inside I was rolling my eyes and saying something like, “Whatever lady.” I take it back now and I wish I could turn the clock back a little too.
It feels just like yesterday I dropped my youngest child off at kindergarten. I cried then and I cried last week when we dropped her off at university. I will always be my children’s mother and I hope they will always need me to some degree, but a chapter in my life has just come to an end and I’m a little sad.

Some parents are happy when that last one leaves the nest, but I’m just not ready for it yet. It’s the end of child rearing I guess and that was my job, my joy, the biggest and best assignment of my life. In the 23 years that I have been a mom, I have made hundreds of peanut butter and jam sandwiches, I have driven to hundreds of practices and I’ve given hundreds of pep talks. I’ve done thousands of loads of laundry; I have given thousands of good night kisses and said thousands of late night prayers. I have baked dozens of cookies and cupcakes, I have made dozens of Halloween costumes, I have thrown dozens of birthday parties and I have bandaged dozens of scraped knees…dance recitals and public speaking contests, hockey games and field trips, Christmas concerts and school plays and on and on the list goes…most mothers know exactly what I’m talking about.
This weekend at Luke’s (my 11 year old nephew) soccer game, I got so excited when he scored a goal and received the MVP award at the end of the game. I thought to myself that perhaps my child rearing days are over, but my child cheering days aren’t. I was at the same soccer field my children played at most Labour Day weekends and here I was again with the same grand purpose in life; to cheer for a young person I love and his team mates and to celebrate with them their accomplishments and encourage them when they make mistakes (at soccer and in life). I just wanted to yell out to the parents all around me, “Enjoy it while it lasts, because time flies and before you know it, they’re all grown up!” (I'd overlook a little eye rolling)

Yesterday, my oldest daughter Erin, sent me a picture and a post on Facebook. It was the picture below and it said this: I was emptying out your dresser when I found these. I can't believe you kept them! I have so many memories of you driving me to ballet and always stopping for a cone. I guess some things never change eh? haha. I love you mom!
 

Take it from a guy like Mike who has been told his days are numbered (all our days are numbered). He would say, “Enjoy every minute of it!”
                               Mike on the ice with his kids - Nathan, Erin, Madison - March 2011
 
                                     Erin and Nathan in angel costumes (about 4 and 3 yrs old)
 
       Dropping Madison off last week for her first hockey practice at Mount Royal University in Calgary, Alberta.
 
A special thanks to Mike's sister, Aileen, who helped us move Madison. Aileen did most of the driving and was a huge help! Here, Mike and Aileen are helping Madison get groceries.

Friday, 24 August 2012

Grace Like Rain on a Really Hot Day

We were a little bit late for church last Saturday night. It was just a few minutes, but we were late and I didn’t want to be late because Nathan was playing the drums and I didn’t want to miss a minute of the music. Nevertheless, I felt rushed. I feel rushed a lot. It takes me and Mike a long time to do anything…to get ready to go out, to get ready for bed, to get up and at em in the morning etc.

It took us a full hour to get ready to go get Madison from the airport earlier that day. Madison was in Edmonton for almost a week for the Canadian national ball hockey tournament and I was excited to go pick her up. Mike decided he wasn’t going to come; he said he would lie down and have a little nap while I was gone. But first, he needed to go to the washroom. He also wanted to brush his teeth, have his face and hands washed and blow his nose. Then I helped him to the couch to lie down. After about 5 minutes of arranging pillows here and there, he couldn’t get comfortable, so I sat him back up and told him to come with me to the airport and he could sleep on the way. I put his socks and shoes on and we walked to the car. Believe it or not, that all took one hour, so now we were running late for the airport. I drove fast (faster than usual) and we got there on time, but had to wait about 45 minutes for Madison’s stick to show up in the fragile baggage claim. And this is what put us behind for church.
Earlier, while I fed Mike his lunch, he and I visited with Erin in the living room. Erin and I listened to fitness music and chose songs we liked for new play lists we both need for our fitness classes. We were having a wonderful, relaxing time, but had to wrap things up abruptly when I realized we needed to get ready to go to the airport.

Lunch was late that day because Mike and I took our dog Molly to the dyke for a swim. Mike and I were taking care of the dog because Madison was away. We were in the middle of a heat wave and in order to keep the dog cool for a few hours and get her some exercise, we thought a swim was a good idea and it was it just made our lunch later.
Molly had to wait though because our nephew Luke had a soccer game in the morning and we decided last minute to go (not really last minute – that would be out of the question, more like an hour before). Mike insisted to forgo his morning routine of drinks and Budwig protocol (see blog post: What a Heal!) to get to the game…we still missed the first half. But that was okay, because the game ran late and that’s why Molly had to wait.

It was a great day, but I’m not going to lie, a busy day like that is very exhausting for me and I can get frustrated too. Plus it was the hottest week of the year and that wasn’t helping either. But regardless of the temperature, getting Mike here and there, in and out of the vehicle, to and from his wheelchair, up and down from the sofa, to the washroom, dressed and undressed, in and out of bed, from his left side to his right side and so on and so forth, can be a little wearing to say the least.
But that night at church when we sang “Hallelujah, grace like rain, falls down on me. Hallelujah, all my stains are washed away…they’re washed away,” it didn’t matter that we were late. God’s greatest gift to me; His grace…His undeserved mercy and love was all I needed to sing about and I forgot about being late and the hurried feeling I felt five minutes before we got there. My energy was renewed, my attitude improved and peace replaced the hurry.

In the words of another great song (old hymn), 'God’s grace is greater than anything', including my rushed and hurried day, including a debilitating disease like ALS, including the imperfections of this world, including the trials of our lives. God’s grace is greater than all these things and it’s really what I need the most to overcome the above and press on every day.
After the ‘grace like rain’ song (Chris Tomlin’s rendition of Amazing Grace), Nathan left his drum booth and sat down with a bongo drum. The music started slow and softly and I was swept further away from my troubles with another song I love; The River by Brian Doerksen. Half way through, Nathan left the bongo drum and went back to his drum booth and as he played those drums, the song grew louder and more powerful and more captivating. It was moving and beautiful and the words go like this:

To the river I am going
Bringing sins I cannot bear
Come and cleanse me, come forgive me
Lord I need to meet you there

In these waters, healing mercy
Flows with freedom from despair
I am going, to that river
Lord I need to meet you there

Precious Jesus, I am ready
To surrender every care
Take my hand now, lead me closer
Lord I need to meet you there

Come and join us, in the river
Come find life beyond compare
He is calling, He is waiting
Jesus longs to meet you there



                                                      Mike and Molly at the dyke



Sunday, 12 August 2012

A Wonderful Gift Indeed


It was my birthday last week. I expected to receive some cards and gifts from family and friends and homemade cards, flowers and a gluten free birthday cake from my kids like so many wonderful birthdays before. But, first thing in the morning, I prayed that I would receive something unexpected. As much as I love all that other stuff, I prayed for something more, something really big. I prayed that Mike would show some sign of improvement. He has been so diligent with his new diet and all the homeopathic remedies, I really wanted for my birthday a sign that Mike’s efforts were paying off so he and the rest of us would be encouraged. That to me would be the ultimate birthday present.
I watched him closely all day. I waited to see something happen…perhaps a few fingers would unfold, or maybe he would lift an arm or something. I listened closely to observe any improvements in his speech, but there weren’t any.  There weren't any changes at all. He seemed the same as he was the day before.

The next day as I pondered my birthday and the gift I wanted, but didn’t get, a light came on in my head as I realised that spending the day with Mike was a gift. Every day I have with him is a splendid gift (every day we spend with the ones we love is a gift). And, what’s more, Mike was the same as the day before…he wasn’t any worse. This, my gift, was a wonderful gift indeed.
This is what Oswald Chambers says on my birthday (Aug 5). It may or may not apply, but it’s a very good message and worth sharing: What God calls us to cannot be definitely stated, because His call is simply to be His friend to accomplish His own purposes…If we are in fellowship and oneness with God and recognize that He is taking us into His purposes, then we will no longer strive to find out what His purposes are. As we grow in the Christian life, it becomes simpler to us, because we are less inclined to say, “I wonder why God allowed this or that?” And we begin to see that the compelling purpose of God lies behind everything in life, and that God is divinely shaping us into oneness with that purpose. A Christian is someone who trusts in the knowledge and the wisdom of God, not in his own abilities. If we have a purpose of our own, it destroys the simplicity and the calm, relaxed pace which should be characteristic of the children of God.

Me, Leah and Mike by the pool (my sister's house). Record breaking heat that day.

Nathan, Mike and me in the pool. Mike's eyes lit up when we suggested he go for a dip.             Nathan lifted him in.

Later at Nathan's frisbee game. Leah took this one.

My dad...Leah took this one too.

My mom and Leah.

The grand finale to the day. Mike got the picture he has wanted to get for a long time.



Saturday, 28 July 2012

What a Heal!

The word 'incurable' is not in God’s dictionary, so we decided to take it out of ours. We believe that God has the solution to every problem. God knows the cure for very illness and disease on the planet. We have been praying for God to reveal the solution…the cure to ALS since Mike was diagnosed in March 2011.

The human body was created to heal itself if things are right. Obviously things aren’t right in Mike, so the idea is to make things right so his body will do what it was designed to do – heal, recover, repair etc. So, we enlisted the expertise and help of a local homeopath/health coach and embarked on a naturopathic regimen a couple of weeks ago.
Our new friend and health coach set Mike up right away with a collection of powders (green and gray and really green), drops, supplements and a really gross breakfast; organic cottage cheese and flax oil. It’s called the Budwig protocol and is used commonly in the natural treatment of cancer. One of the main functions of the Budwig protocol is to reform the oxygen uptake of the cells and provide good fats, the ones desperately needed in neurodegenerative diseases. Most of the other stuff is for detoxification and chelating (the removal of heavy metals). He gets painted with stuff, he gets hooked up to stuff…it goes on all day.

Last week, Mike had his blood analyzed. There was a lot going on and not in a good way. Our health coach told Mike not to be too discouraged. Mike told him he wasn’t discouraged. He said he would be discouraged if they found nothing wrong, then there would be nothing to fix.
Today is the twelfth day, and I must say, wow, I don’t think I could ever do this. Mike has proved himself again to be determined, courageous, optimistic and very strong. When we decided to do this, we agreed that it would be worth it even for the slightest improvement; to blow his nose or feed himself or go to the washroom with a little privacy or roll over in bed. To shake a hand, or wave good bye, to pick up the phone (he never answered the phone anyway). To say what he really wants to say when he wants to say it…we would appreciate any improvement and continue to hope and pray for full recovery.


                                                      Mike's Budwig breakfast...yum

Lunch and dinner

and dessert...a gluten free, dairy free cupcake

Tuesday, 17 July 2012

A Math Lesson I Understand

Our youngest daughter, Madison graduated from high school last month. She’s our baby, so this significant event in her life hugely impacts mine. My chicks are almost all out of the nest and it makes me sad.

I’m happy for her, sad for me. I’m happy for her because soon she will be off to Mount Royal University in Calgary, Alberta to start the next chapter of her life. She has been given an athletic scholarship that covers all of her tuition for five years.
Madison was approached by coaches and scouts from twelve different universities this past year with varying scholarship offers to play hockey for their schools (mostly Canadian, a few American). I have mentioned in past blog posts that this past season, I was the trainer (safety person) for her hockey team, the Phantom, who I might add won the BC Provincial Championships this year. Being the team trainer, I was with the team in the dressing room before, during ice cleans and after games. This was advantageous when coaches and scouts came knocking on the dressing room doors. I was able to meet the coaches and ask questions and ultimately help Madison make her final decision.

Needless to say, Madison is an exceptional hockey player; she is a gifted athlete. Athletics has always been a big part of our children’s lives and they are all good at sports. They are all fast, co-ordinated and team players. I think what makes them stand out as athletes though, is their determination, commitment to train hard, listen to their coaches and try their best.
Anyway, Madison has chosen a degree program at Mount Royal that is a combination of business and sports, it’s called: Bachelor of Applied Business Entrepreneurship – Sport and Recreation. Math 12 is one of the required courses for this degree, but Madison didn’t take Math 12 this year, so Madison is taking Math 12 in summer school.

Math was my worst subject; Mike’s too. So our poor children, falling not far from the tree have never done that well in math either. I probably don’t need to paint a picture, but Madison was stressed out right away. She was worried and afraid that she would fail. She was questioning her decision about the program she has chosen, she was talking like she was a failure and that was just the first week of the four week course.
During the second week, there seemed to be a glimmer of hope. While she was studying her math one day after school, she told us how the teacher had said to the students that if they listened and tried their best, they would pass his class. Madison was listening, she was trying her best…it’s like the simplest math equation – one plus one equals a pass.

I keep thinking about what the teacher said and wonder if his students didn’t learn more in that one lesson than they will in all the math lessons of summer school this summer. I think it’s very wise and valuable advice we should all follow. Whether in sports, academics, work, relationships or whatever, if we listen and do try our best, surely we will succeed.
As Mike’s primary care giver it’s a good reminder that if I listen (pay attention) and try my best, I will do well at the job I never in a million years thought I’d be doing. And as a Christian, I apply the same principal to my relationship with the Lord and I think of Luke 11:28, which says, But even more blessed are those who hear the word of God and put it into practice. (New Living Translation)



Two pictures taken from two news paper articles. Top - Madison in action. Bottom - Madison (in front) with friends Payge and Emily.


Friday, 13 July 2012

Divine Intervention

It’s obvious I’ve been slacking off in the ‘blog’ department lately. It’s not for lack of material; it’s more an issue of time and focus. In fact, I have lots of ideas, I actually write blogs every day…in my head that is.

Anyway, I have a list of things to write about: this one being at the top of my list. I call it: Divine Intervention.
I mentioned in my last post that some family members came out from Toronto to participate in the ALS walk and spend some time with us. Mike’s dad George, his sister Aileen, her husband Ross and our brother in law, Gary stayed a week and Mike’s mum Sheila and sister, Pat stayed for two.

It was evident right off the bat that they all wanted to help.  They were looking for things to do for us. It didn’t take long and the guys were busy with some home repairs, the girls were cooking and they all were fussing over Mike…it was great. They wouldn’t let me do anything for them, I didn’t cook a meal, I didn’t drive anyone anywhere I just enjoyed their company and delighted in watching them dote on Mike.
It was hard to say good bye to the four that left after a week, and great to keep the other two for a little while longer. Pat continued to take care of Mike and look out for her mum. She has a gift of caring for people and whatever Mike needed he got including more of her home cooked meals – shepherd’s pie, mac and cheese, lasagne and spaghetti sauce (our freezer is full…I should say half full now).

I knew Pat and Sheila weren’t going to let me do anything for them, and with Pat busy trying to take care of everyone, all I could do was pray that the Lord would meet her needs, whatever those needs might be. And this is how I believe the Lord answered that prayer the very next day:
Mike had his appointment with the ALS team at GF Strong and Pat came along. It worked out well because this appointment only happens every three months. On our way to GF Strong, Pat mentioned how she had really hoped to go out to UBC (University of British Columbia) while she was here. She explained that she had been following the ALS research of a Doctor Neil Cashman who did his research at the university. Her and Aileen have spent hours most days since Mike was diagnosed investigating ALS.

When we got to GF Strong we had to wait, which is unusual. While we were chatting in the waiting area, Pat noticed Dr. Cashman’s name on the list of doctor’s names on the door of the ALS centre. She said she had no idea his office was at GF Strong. She said if she had known, maybe some how she could have arranged to meet him while we were there. We discussed how the chances of a busy doctor and researcher being there and available when we were going to be there, would be slim.
A minute or two later, a very pleasant looking man with silver hair came out of an office to greet a couple who were standing at the reception desk. Pat had her eye on this guy and after the group of three went back into the office, Pat said, ‘’I’m pretty sure that’s him!’’ She said she had seen his picture so many times on the research articles she has read on the internet, she should know him anywhere.

Her face lit up and I could tell that meeting this man would make her day. So I went and asked the receptionist if the pleasant looking man with the silver hair was in fact Dr. Cashman. She confirmed it was. I told the receptionist that my sister-in-law had been following his research and would love to meet him. I asked her if perhaps he had a few minutes during our three hour appointment to meet Pat. She had a look at his schedule and said he did a little later.
While the physiotherapists were working with Mike, Pat and I snuck out of the examination room we were in and went to see if Dr. Cashman was available. We could see his image through the tainted glass in his office and could tell he was alone. I asked someone working there if they could please knock on his door and ask him if he had a few minutes to meet Pat. Just then, Mike’s doctor, Dr. Krieger approached me with some questions and Pat disappeared. She was off to meet the guy she had earlier said she wished she could to meet. (I love it when wishes come true)

When she returned, she was beaming and I think she was walking on air as well. When our examination room cleared and while we waited to see the last person we were to see (the speech therapist), Pat was happy to tell us about her impromptu meeting with Dr. Cashman. She told us that he said he was feeling very positive about the results of the latest drug being tested. He said that the results will be public information in December and the drug itself will probably be available in the New Year. She told us about the rest of their conversation and about the hug he gave her and how nice he was. In the five minutes they spent together, Pat’s hope for her little brother had been renewed. That was all this concerned sister needed.
Later in the car on the way home, I told her that there was no way we could have made that meeting happen if we tried. I suggested that the Lord made all the arrangements behind our backs…she smiled and agreed (I think she smiled all the way home). With excitement we talked about it again and again for the rest of the week. Pat kept saying what a nice guy the doctor was and she called the meeting a ‘divine intervention’. We just smiled and agreed.


                                                                       Mike and sister Pat

                                                                           Sheila and Mike