Dave Johnson LIVING with ALS

November17, 1966 - November 19, 2011

2011-02-14T13:53:00.000-08:00

how could a few numbers and letters represent the life of my beautiful husband. i'm in the dash. our life, our children,our happiness, our pain. all in that small dash.

yesterday was our 23rd anniversary.

i'm writing this blog from phoenix. i ran away from an empty condo, lonely nights, empty dreams and unexplained rejection.

i sit here, poolside with people, 20 - 40 years older than me. i envy most of them! they have had the privilege of growing old together...

as i write i'm listening to MWS on his new CD WONDER. it is curious why he would put a love song "forever yours" followed by a goodbye song "welcome home". just minutes between two of the most lovely songs i've heard...a small dash...

i realize many who read this blog do so for news of dave...i can't do that anymore! i really never could! i only could tell you of things happening around him, through my perspective. i want you to know i did not have any warning directly from dave that he was so close to leaving us. he told me on his birthday that he felt it was time we spent every day together. that was our code. i knew things were getting rough. the next day i came to the village prepared to post on the blog...i arrived on the scene of my precious husband struggling to breath...heaven took him at 8:22 the next morning...

...song playing right now is "take me over"...mws,wonder. how amazing is our God?

i end this blog...being blessed by God himself...i am speechless...

this will be the end of the posts for Dave's blog...the life of the Johnson family will be continued in; shanistilllivivng.blogspot.com Thank you once again for all you did, said and gave.

A LETTER TO DAVE. . ."ITS WIN, WIN"!

2010-12-04T11:01:00.000-08:00

To you: David, Shani, Andre, Crystal and Chris,

There is so much going through my mind right now, I don't even know where to start. I can't sleep because of all these new and exciting thoughts and feelings I have. I started writing this letter about a week and a half ago at 11:00 at night to tell you about my journey and have been working on it ever since. I want to get it just right for you!

I know you must have heard from David or Shani that I have accepted Jesus Christ as my Saviour. My bringing Christ into my life has been a gradual process. I knew deep down I always believed in Him, but have never really talked about it before I guess because there was no one to talk to. Before I met you, I have only seen people go to church on Sundays, claim they believe in God and Jesus, and never again throughout the week bring these beliefs into everyday living. Through David, I have met the most fascinating people. Shani, Andre, Crystal, Chris...and of course you too David! People who are not afraid to speak out loud about where they find hope and faith. Every single day when I see each of you, not a day goes by that you don't bring up God's name. You have such unfailing faith and comfort in knowing He is there for you and He loves you. Over time, I have seen your strength and passion in God and I believe that you have all helped Him grow in me.

I have become very close with David, his wife and even his children. On top of that, Shani does my nails every few weeks. When she was doing my nails last, on August 22, I was having a very tough day at work. It was just one of those off days for Dave and of course it's not easy to see someone you love struggle. We started talking about careers somehow and I said "Shani, what should I do? I can't be a care aide forever..." and I kind of skirted around for a few minutes, making excuses why I can't be in this line of work long-term: the physical strain of it, maybe one day getting burned out and so on... and finally the truth came out of my mouth and I just started to cry and cry and cry. I told her "I don't want to go there without David there. How could I be there, have all those memories of him and him not be there anymore?" So there it was. I love my job, but I didn't want to go on without him there. I still don't, but I know now more than ever that I will not be alone. I told her I don't want to do this anymore, I wish I could quit my job after he's gone and do something else, or work somewhere else. I asked her how she does it. How can you guys be so strong and go through what you're going through. She was so supportive. She just sat there holding my hand and watched me cry. Ten boxes of Kleenex later I told her I want to be as strong as you. I want to have the same hope and faith that you both show every day. You two are the strongest, bravest, most courageous people I know. I told her I felt so weak. I told her I felt like I was being selfish and I felt foolish. After all, I'm sitting here, with his wife, while I'm the one crying my head off. I think she looked a little shocked, but I think she was expecting this moment to come.

Later on she told me Crystal knew this was going to happen. Crystal, Shani said you knew I was almost ready to meet Jesus. She asked you what she should do if she was with me when it happened, and you said for her to pray with me, and so she did. I asked how you would know something like that and Shani just said you have a way of knowing these things. She couldn't wait to tell you this story! Her excitement was contagious! When I saw you at church, you told me from the moment you met me you knew God was with me. I think that is the highest of compliments!

Anyway, she told me I was not being selfish or foolish. She looked straight into my eyes and said "Stacy, do you want to pray with me right now and ask Jesus into your life and for Him to be your Saviour?" I told her I did. I already did that but I don't think it worked. (That may sound ridiculous, but it's the truth) She said, "What! When did you do that?!" and I told her maybe 2 months ago. She said, "Okay, let me get this straight. So, you asked Jesus into your life, and you don't think your prayer worked ?" I nodded and said I don't really feel any differently. She asked if I acknowledged what he did on the cross and I said no, not really... She asked again if I would like to pray with her, but I kind of brushed it off, and she asked "Do you want a sure way to see David again? Do you want to meet him in Heaven?" and of course that was a sure "YES!" She told me if I do this, that it won't matter what I do, or where I work, it will not matter because I will never be alone and I will be unconditionally loved at all times.

I know I should be grateful for my job, and I am. After all, it was the place that brought me together with David, and all of you. I am so happy to see all of you when I do. I hope you all know what you mean to me. Not just because of the unshakable faith that you show but for your geniune and sincere kindness as well.

So, Shani and I talked a little more, and she took me over to the couch and she started reading me bits and pieces of the Bible. She had told me before that she could see Jesus had His hand on me, and when I was ready to let Him into my life and begin a personal relationship with Him that I would understand... We talked some more, and I cried some more... I asked about a million questions and eventually I said something along the lines of okay, let's do it, let's pray, I'm ready. I told her I didn't know what to say. She asked if she could pray with me and I would repeat after her. I agreed. So we closed our eyes, she said a prayer and I repeated after her. When we were finished, we started laughing and crying and she said "I've never done that before" and I said "me either" and we laughed some more. She got all excited saying we were like sisters now and she gave me two books. One is "The Message" and the other is a little book that holds a quote for each day of the year, and she signed the inside, -To my new "sister", with all my love...Shani Aug 22, 2010. From my hands to yours...-

David, you have no idea how excited Shani was for me to tell you! She wanted us to go over and see you right then and there but I was meeting April for coffee right after. You saw how excited she was the next morning when she came to see us. I must say, if it wasn't for your crazy wife (I love you Shani, no offense) I most likely would have kept that to myself. That's just me. I guess I am a little shy when things are new to me, but one day hopefully I will be saying what I feel inside - out loud. You said you wish you could stand up and shout about how great our future is, and I think I am starting to see your point. This is only the beginning!

Finally after all that, we got back to doing my nails, and the most beautiful rainbow came out, and she said "That's Jesus giving you a rainbow!" I laughed and told her, "Shani, that's because it just rained." She smiled and said "Nope. You can't think like that anymore." and she went on to say that all the angels were singing for me because one more child has been saved. (At least, I think thats what she said) So that is my story and how each of you have played a roll. Also, Louie Giglio! He is a phenomenal speaker and gets the message across in a fun way, I really can't wait to go see him Nov 5th!!!

The main reason I am writing you this letter is to say thank you. You have made my life that much more special for having known you. I pray and hope that our relationships continue to grow and I hope to know you no matter the circumstances! I just had to tell you my story because you have given me the courage to stand on even ground again and I wanted you to know that your example of living has shown me the way. I know there is more out there and I now understand God is painting a massive canvas everyday, a plan for everyone. When you don't think you can take another step, He gives you the strength to go on. I want to say, I think you are very special and my life has been better for knowing you!!

Love Stacy

John 15:13
Greater love has no one than this: to lay down one’s life for one’s friends.

Forward

The Daily News. . .

2010-09-21T19:40:00.000-07:00

Do you find that sometimes life can be so, well, daily. . .I prefer the mountain top. When God and I are speaking the same language, when the Holy Spirit visits and leaves my whole being smilin and when my eyes are set on the Eternal Perspective. Dave and I are so blessed to see God working in a BIG way at Village at Millcreek!
Through a speaker Louie Giglio and his 'PASSION' series. Things have been really stirred up! God has given has us a new family! and do they ever take good care of us!!! If you want to see what it's like to feel God work, come visit 1450 Sutherland Ave. Ummmmmm that's in Kelowna by the way!!! Not Mexico,a foreign country or projects area in any city in North America.
It is, however where one man chooses victory over defeat everyday. It is where each day he chooses life, while on death row. He did not abandon and blame the God of his faith, he embraced Him and praised him. All this without barely a word and God is glorified, amen!
Guess what, you can't get more real than that. People want that. Pure ,honest, strength from a real God. Because, as Louie says..."BIG TROUBLE WILL COME"...And when it does you want to know who your ANCHOR is...!
Still, today was daily...it came on the heels of an horrendous yesterday. Today, as I hugged my husband as best I could I asked him if he was sure God hadn't told him, just him, that everything was going to okay, because I needed him, I wasn't sure I could live without love, love with arms.
Dave is getting weaker in every area, every day. This is the first and only time he has said this...I'll use this as a gentle reminder that visits should be kept short. Please no more than 10min. Dave has not had the energy nor heart to write lately, please pray.
As I end this daily day...I'm sitting in my big chair, looking out a stunning full moon. I can smell a apple/cider candle mixed with the aroma of steaming 'chai white tea'.I dressed my house for fall today, all the cozy blankets and pillows are back...my kitten Cleopatra is napping on the back of my chair . . . It's "clean sheet" day, actually, for both Dave and I!...It was always a celebration as a family! I don't even remember why? just fun I guess...over the years it began to take on a meaning of it's own for Dave and I (lol),which lost some of it's luster when the kids figured it out!!!

...No more Micheal Buble tonight...ohhh welll....

P.S."My beloved spoke to me,"Arise my darling, my beautiful one, and come with me." Song of Solomon 2vs16 It's all okay God is extremely romantic...read Song of Solomon lately...make sure you combine it with "clean sheet day"...and maybe Micheal Buble...or make your own music, its always the best!

Life Lessons...from Cleaning my Fridge ?

2010-09-11T15:38:00.000-07:00

I woke up in the dull- drums today...for the few of you who don't know where that is...It is somewhere between self-pity and lack of motivation. Mine had a "to-do" list attached. So I had a really bad case.

I moped over my coffee and stared at my devotion book just daring me to pick it up...the one thing I have learned ; don't mess with God, just pick up the book, PICK UP THE BOOK.....the first thing I read was "I will ask the Father, and he will give you another Helper....." I'm, like, swwweeeet!!!!! Do I ever need help today! You should see my list!

Oops! There is a second part to that verse, my helper is who? WHO? - the Spirit of TRUTH, wellll how good is he at taking out the garbage???JK,JK (that's just kidding) for all of you without teenagers.

Well as usual God's truth started tugging at my heart, as I read on..."We need help. Help from the inside out....Not near us. Not above us. Not around us. But in us. In the part of us we don't even know. In the heart no one else has seen."*

I prayed. God worked, he cleaned out the heaviness of a messy heart....as my heart got lighter so did my spirit and my list looked manageable.

Until I opened up my FRIDGE!!! How does that happen??? In a couple of days.....errrr weeks......Gross does not describe what a spilled cup of coffee can turn into in a "few" days!!! With my best house-cleaning music full blast,' Casting Crowns' WOOT! I started from the top down. Some things just hit the trash right away. You know what I mean, no need to examine it just torpedo into the trash ASAP! Other things, well, I had to open, dump, wash, then put in the dishwasher. The truly nasty, nasty stuff that you can't see because it's in a container. Yep, you are starting to get the picture here, aren't you?

The coffee had slithered down two levels and was pooled on the bottom of the fridge. Ooey, gooey brown sludge. There was no hiding that! But as I scoured the reason for the fridge cleaning in the first place, yes, even after all the brown sludge had been wiped away.....it was still there!!!!!!! Nicely lodged into the cracks and crevices of the bottom shelf and try as I might, and trust me, I did try, I could not get in all out. You know it, I HAD TO COMPLETELY DISMANTLE THE SHELF. Why do they not make sinks large enough to handle these items??? As I was doing this....GOD SPOKE in TRUTH to me. It struck me how far God will go to clean my CLOCK, OOPS! I meant HEART...really.....

I mean somethings are really obvious and might even be visible to others, like a bad attitude or fowl language. Others are more hidden...movies, TV,books we choose to read...our thought life....

The Spirit of truth is a great Helper, he shines his light so we can see all the secret places of our hearts....all the places that need house-cleaning. It's hard work but the results are AMAZING!

"I will ask the Father, and he will give you another Helper to be with you forever - the Spirit of truth." John 14: 16-17

*Quote from Max Lucado "Grace for the Moment"

HOW GREAT IS OUR GOD ! A Letter for louie

2010-08-17T12:27:00.000-07:00

Louie! i'm blown away by the greatness of God! My husband David was diagnosed with ALS 3yrs ago. It is terminal, no cause, no cure.He will be 44 this yr. We have two children Josh 20 and Ashley18. David was the "laminin" in our family!! lol !! That is part of the reason we shattered upon hearing this diagnosis. We had to move him into a care facility about a year and a half ago. He now, cannot move from the neck down. His speech which was one of the first things to decline has been completely gone for several months.

Here is the awsome part! The Glory and majesty of God that shines through my husband because of his sustaining faith in Jesus Christ our Lord has affected the entire care home!!! Last night we had a "Movie nite" It was advertised as this "..To anyone who would like to get to know David a bit more and the faith that keeps him strong"..Louie, people came!! Ages18-over90! You could hear a pin drop after "indescribable" during "How Great" I could literally hear the cry of younger generations hearts and the deep seeded need to be loved by such a Mighty but tender God resonated through them. I know that you impact millions at a time, but in this smaller setting I could hear the heart beat of God, feel the anticipation as God and the heavenly hosts bent closer waiting for the birth of a new child in Christ...Dave and I are priviligded participants to be even a teeny tiny part of God's kingdom. Your Passion series have given us strength for the journey as we watch them again and again, and share them with others. I am sure you have read Randy Alcorn, who's entire ministry is "Eternal Perspectives".His book "Heaven" has been incredibly inspiring for us and our family and friends. Your Passion Series is another tool God has used to help us focus on the Big Picture of living, thank you. If you are interested in more of our life story, I assure there is more! Visit: davejohnsonlivingwithals@blogspot.com

P.S If you happen to be talking to Chris Tomlin or Matt Redman, you can tell them they are the only ones playing on my Ipod!! because they are so God focused, they point me to the cross. If Jesus choses to take Dave to be with him, at his memorial we are having several songs from both. in particular we are ending it with "Everlasting God"

JOY!!! Shani

Nehemiah8vs10

JOY!!! Shani

Nehemiah8vs10

There is Hope!!!

2010-07-17T04:39:00.000-07:00

THE EYE GAZE EDGE !

Our most awesome friend TOM STYLES researched until he found
something that would give Dave his voice back. Originally developed for fighter pilots, this Eye
gaze allows Dave to type out his words using only his retina!!!!

It also controls a complete computer system, TV and so many other things, its mind boggling.

He has a unit right now that is mounted to the wall but the unit that would best suit Dave would be a
wheelchair mount. It is also able to be portable on a rolling unit for his bed! Woot! Up until now Dave has not had a way to call for help at nite. Wow we are so amazed at God's faithfulness.

Here is a YOUTUBE Link of Dave using the system: http://www.youtube.com/watch?v=6qL2OGtOArw

We are so blessed to have a faithful God and family and friends. If you feel like you would like to contribute to this system;

PLEASE CALL,
Tom Styles @1 403 585 9203

WHAT'S NEW & AMAZING???

2010-07-17T03:29:00.000-07:00

So many things! Dave is doing so well despite his present circumstances! As his mobility continues to diminish, the more God's strength is poured out on him. I, we are able to see the Glory of the Lord all around us as God works in and through Dave! There is just glory after glory!

glory;..."the splendor and bliss of heaven"...

The thing that blows my mind is that Dave doesn't have to say a word...not a word and people see Jesus in him. They may not know it ,but God does! Yes!

Dave cannot move the neck down. Eating is very labour intensive and can be stopped when ever Dave wishes. Not YET Dave says! So mom and I are going to make him some home made mush yummmmmm!

After several weeks of rapid decline in his speech. We went through almost an entire grieving process. We could barely make out basic phrases. It was hard on everyone but especially, as some of his basic needs were not looked after. Getting settled into bed was a nightmare ha ha (pardon the pun) If every thing wasn't right he suffers through the whole nite. David is by far the strongest man I know...

JULIA CHILDS "MASTERING THE ART OF FRENCH COOKING" It's All about HOPE

2009-12-14T12:18:00.000-08:00

We recently rented the movie "JULIE & JULIA". Dave had the opportunity to watch it twice! Once with me and a second time with Ashlea on Sunday when he was home.

I can hear all the male population out there groaning in pity for Dave...

By the way if you have not seen the movie you will probably will not catch the significance of this post. I am not going to explain the synopsis of the movie to you...sorry. It is already a sketchy word picture, if you do indeed understand it, send me a note. Silent posts are dreadful...

I'm also putting sole blame on Dave he said " you should put that on the blog, it might help people understand us better.." I said " naw they will think I'm "venting" again, and chalk it up to "stress" Ha, Ha! Who in their right mind compares their life to a boneless duck"??? But for our family at that moment it made sense and we thought ourselves may be a little profound...hmmm

Here goes. Sunday was supposed to be our big "Christmas memory" day! Earlier in the week it sounded like a marvelous idea. Ashlea had single handedly put up the tree and decorated it, no small feat! But saved the angel and "our first Christmas 1988" for photo opps on Sun. I had dug out various other decorating paraphernalia in hopes once it was out it would go up! No such luck, we lost momentum and everything sat where it was...but we still had Sunday!

Sunday we picked up Dave and Starbucks came home and watched the snow fall. It was lovely. Ashlea prepared lunch, bless her. Well instead of getting right to those holiday tasks and recording them for memories sake we all got lethargic and naps, reading and watching football seemed more desirable. While I was sleeping the movie was watched, it got dark, everybody gathered in the great room. Things were pretty low key.

Ashlea looked up from her book and asked, "Why do you think it takes us so long to get anything done at home? We had so many plans today and we haven't accomplished anything. I think if people really knew what goes on in this house they would be shocked...this is where our pain shows where no one can see it... we are always exhausted..."

We sat for a moment absorbing what that meant for all of us when my mind grasped on to a recent example Ashlea had just seen, Julia Child's infamous "Pate de Canarden Croute" or Boned Stuffed Duck Baked in a Pastry Crust. I said, " Honey we are kind of like the duck in the movie...When we go out we look great, we smell great, we put on a happy face just like the duck looks great on a serving platter. We do it for ourselves and for others, it makes us more palatable, and for us we can wear a mask and pretend every thing is okay for a little while. In reality we can't hold that position for long because nothing is holding us up, we've been de-boned. Not very many people can see that. Our strength is depleted by grief, sorrow, lost dreams, memories, regret and by the enormous amount of energy it takes to put one foot in front of the other...on and on and on. When we come home we go SPLAT! No bones remember!

That's why dishes can cover the counters for a week, laundry is left undone, beds unmade, house work untouched. The garage can fill up the garbage simply because the effort is to great...Fridge empty, the stress too overwhelming to actually go out and think what to buy...Clothes can pile up clean but unhung just because we are to weary and bed seems a safe escape...Every now and then we overcome...

Home is where we hide our pain...

BUT WE HAVE HOPE!

Romans 15:13
13May the God of HOPE fill you with all joy and peace as you trust in him, so that you may overflow with HOPE by the power of the Holy Spirit.

Psalm 39:7
7 "But now, Lord, what do I look for? My HOPE is in you.

Isaiah 40:31
31 but those who HOPE in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

For you scholars out there,

HOPE;
One of the three main elements of Christian character (1 Corinthians 13:13). It is joined to faith and love, and is opposed to seeing or possessing (Romans 8:24; 1 John 3:2). "Hope is an essential and fundamental element of Christian life, so essential indeed, that, like faith and love, it can itself designate the essence of Christianity (1 Peter 3:15; Hebrews 10:23). In it the whole glory of the Christian vocation is centred (Ephesians 1:18; 4:4)." Unbelievers are without this hope (Ephesians 2:12; 1 Thessalonians 4:13). Christ is the actual object of the believer's hope, because it is in his second coming that the hope of glory will be fulfilled (1 Timothy 1:1; Colossians 1:27; Titus 2:13). It is spoken of as "lively", i.e., a living, hope, a hope not frail and perishable, but having a perennial life (1 Peter 1:3). In Romans 5:2 the "hope" spoken of is probably objective, i.e., "the hope set before us," namely, eternal life (Comp. 12:12). In 1 John 3:3 the expression "hope in him" ought rather to be, as in the Revised Version, "hope on him," i.e., a hope based on God.

And now these three things remain: faith, hope and love. But the greatest of these is love. 1Corinthians 13:13

11 days to show love to some of the most difficult people we know, usually those we are related to! JOY!

JOY !

2009-11-29T15:10:00.000-08:00

Recently a friend commented on how I've been signing my emails with the word "JOY''.

Really, how could I be finding joy in my day to day life? That is the miracle of Jesus our family experiences. Not every day, no, but if we choose to stop and call out, JESUS will meet us right where we are!

The reference were that is found in the Bible is;

Nehemiah8v10;Do not sorrow, for the JOY of the Lord is your strength!

One incredible attribute of our God is that when we need to "sorrow" he is there as well comforting us.

Psalm34v17-19 " The Lord is close to the brokenhearted and he saves those who are crushed in spirit".

GOD STILL COMES by Max Lucado

2009-09-05T15:50:00.000-07:00

After a long summer filled with waiting I would like to share a short devotional with you. One thing I know you may have been waiting for is for me to write on this blog with news of Dave!!!

I apologize.

As I have said before when there is lagging updates you are not missing out on the good stuff. Sometimes life does not translate well to words. And if it did I am not sure they are meant to be heard by all.... hmmmm

Dave has had to make some transitions that he has found brutally difficult. His mobility has declined to the point where his first wheelchair was no longer meeting his needs. Another chair had to be ordered, fitted to his needs. In many ways this was a good thing, but time consuming and slow. Then to wait for approval and arrival Dave went through a time of almost complete loss of mobility right in the time we had imagined being outside walking etc.

This was a serious time of discouragement for Dave as his new limitations are almost as big as the fist ones.

People worked so hard to get him out and about and the Occupational Therapist cared deeply about getting Dave mobile again. Thank you to all the friends, family, care and support staff at"Village at Millcreek" who go above and beyond the call of duty every single day.
Dave now has his new chair he controls it with his head. It also has controls at the back for 3rd person. it is a huge learning curve, as it is longer and wider. But much more comfortable!!!!

During this time of waiting I went through a series of migraines lasting almost a month. It has been a long time since I have had one this severe and long lasting. They take an enormous tole on the whole family. We have amazing Doctors. A husband / wife team. With their compassionate care we were finally able to break the cycle. The last ten days I took a very strong med and did not leave the house. It was that or the hospital for I.V. treatment which involves 8-10 hr days in the E.R and no guaranteed success.

The Lord is close to the broken hearted,
and he saves those whose spirits have been crushed. Psalm 34:18

"Everything that was written in the past was written to teach us," Paul penned "The scriptures give us patience and encouragement so that we can have hope" Romans 15:4

These are not just Sunday school stories. Not romantic fables...They
are real historical moments in which a real God met real pain so we could answer the question
Where is God when I hurt?
How does God react to dashed hopes? Read the story of Jarius.
How does the Father feel about those who are ill?
Stand with him at the pool of Bethseda.
Do you long for him to speak to your lonely heart?
Then listen as he speaks to the Emmaus-bound disciples....

He's doing it just for them. He's doing it for me. He's doing it for you...

The God who spoke still speaks... The god who came still comes. H comes into our world. He comes into your world. He comes to do what you can't.

Max Lucado

How is Dave?

2009-06-01T17:36:00.000-07:00

....ummmm... errrrrr...ahhhhhhh, I'm going to try this again!!!! Last time I had this post written I lost the whole darn thing to cyberspace...I've been gone a few days trying to find it...but no luck!

Dave is doing so well in some area's, if you are not careful you will miss it. Today his heart was feeling Psalm 13...I sooooo understood, as anyone would, who has been seeking God's face for a long time without an answer. After a long lament the Psalm ends with these two verses;

5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing to the LORD,
for he has been good to me.

Dave is experiencing decreased mobility in his arms/hands. He is finding it difficult to maneuver his wheelchair. This of course, is very frustrating for Dave. It also limits his mobility in a huge way. He does not feel confident to be around crowds and maneuvering into the van has become a very difficult task. The solution is a new wheelchair. The ALS people are working on it, but the wheels turn slowly. Please pray with us...Dave's speech is still good, it takes a little more effort on his part and better listening on our part, but we are so thankful for his voice.

Dave now has a laptop. He would love to hear from you. His answers will be short, but his appreciation deep!

Can I Ask For Help...One more Time ?

2009-06-01T17:16:00.000-07:00

This is a little hard to do...we are settling in, but we have lost our momentum. Somewhere between the memories of our past life together as a family and the realization that Dave is not going to walk through the front door at 5:30 for supper we are stuck.

We are so thankful for what God has done in our lives. It's just now and then our hearts are heavier than than the boxes we have to lift...

If anyone could give us a hour or two, to help with some lifting, closet organizing, or hanging pictures. We would so much appreciate it. We can't find any of Dave's tools so we are kind of stuck.

We dream of having a BBQ here this summer to celebrate God's greatness and the goodness of all his people... we just have a few more steps to the finish line...Would you help?

Contact info: Home #250-980-3247 Shani's cell #250-859-9014

We Moved !!!

2009-05-31T18:51:00.000-07:00

Our new address is on the profile at the front of the blog. This move was very difficult. I am proud of Joshua and Ashlea and their friends, under the direction of Stacey Crandle and a few good men! The move started at 12pm and ended at 12am. The storage unit, stuff from Toronto, filled a 2 ton truck. The things from the condo just kept coming and coming! Ashlea's friends did this, they were great. Mom was with me all day, thanks mom! Our furniture from the property filled the truck twice! Thanks Nick, Jamie, Matt and Toby. Joshua you are awesome! Ashlea kept going from 12 to 12. WoW!

We had a few angels show up Carmen and Jeff. They both live near the storage unit, saw a huge need and filled it! I never got a chance to meet them...

We still have a lot of heavy lifting to do. I have sorted through a garage fulllllll of memories...now they need to be stored in a storage place downstairs. It would be nice to park the cars in the garage. We especially do not want Joshua's van to be "van" dilised in the driveway! That would be tragic...???

Life is Hard...God is Good !

2009-05-15T18:41:00.000-07:00

This week I saw a friend that I had not seen in way too long she had been such a blessing in our lives, but we had lost contact through moves, changed cell numbers etc. She commented on how she missed the blog and wondered what was happening in our lives...in a nut shell...life is hard...God is good. I am going to focus on the God is good part! This blog is going to be in point form and for some reason more personal, life is personal and we are thankful for all of you who have blessed us with your lives. I have realized lately that everyone has a story, everyone has pain, life, at times is hard for everyone. Yet people took time out of their lives to give so completely to ours...
April 5th I shared my story to a church full of people, the amazing part is after 30 min they were
still with me!

Dave sat in the front row with his parents, along with Josh and Ashlea and my sister and her family. What a privilege to have a family, people who know all about you and still love you !

Also present on that special day were the brave prayer warriors who fought hard to gain that ground in healing for me, and have continued to fight as a battle goes on for my health and peace of mind.

Dave, my greatest bravest warrior, who prays continually for his family. Has already read through the Bible once. In 15 days has read through a quarter again!...soon he will have it memorized!

Dave has been treated to 7 Kelowna Rocket games this season! by our very good friend and dedicated hockey fan Crystal, oh, and her husband Noel! thanks guys!!!

We found a perfect home to rent in Quail Ridge! Thank you God! We move in on the 22end, and between the 25th-28th. The house is level entry with master on main and a walkout with two bedrooms/bath/T.V room on lower level. Also separate entrance so Josh can maintain his Independence.

The greatest thing is the move is being handled by Josh and Ashlea directed by Stacy Crandle! Stacy's wife Christie needs our prayers. Her mother is battling cancer, another family in pain...
thanks for giving when life is hard guys...

Ashlea is in "puppy love". His name is Oliver, he weighs 4.4lbs his breed is malti-poo. He has captured her heart and I have to say he's much deserving of it.

We have been blessed with two families who bring Sunday supper to "The Village". It has become a lovely tradition! Blessings to Ralph & Monique and Noel & Crystal. Friends that have never let go through the years...and purpose to continue to support the Johnson family, we love you guys...

Where would our life be without Cam? For a while in our household "call Cam" was a very common phrase! He was our rescuer, our driver, our financial planner, our family counselor and the guy who brought over ice-cream when things got really bad!!! Not to exclude an amazing fundraiser! Our lives would not be what they are today without Cam and the team of people he brought into our lives...I can not wait to see the crown you will throw at Jesus' feet... and a million thanks to your lovely wife who graciously lives without you while you are blessings others.

For 6mths my mom & dad took us into their home and cared for, well, both of us! There was not a thing they would not do! Some of these need not be mentioned!!! Between kids, dogs, company, relatives, workers, and work schedules supper was always on the table and coffee was ready every morning! Thanks mom & dad you are truly amazing!

Dave's family has been very present and supportive. We have enjoyed seeing more of Pam, Trevor and family, as well as Craig and Sheri and family. Pam has helped us enormously with the reams of paper work that this crisis seems to take! Ellen worked hours on the never ending paper trail. Family are a wonderful gift when life is over whelming. Harry has/is doing research and keeping up to date on all things ALS. Trevor thanks for being "hip" enough to text my kids, they love it!!!Lots of Love you guys!!!

Great News !

2009-03-16T23:07:00.000-07:00

Hi, Everyone! We have so much to tell you I hope i can be quick and concise, fit every thing in without dimishing God's GREAT goodness!

Yes through the trials God's faithfulness has shone through in a mighty way.

What do we exspect when God's people pray? Honestly, upuntil recently I really did not know!

Things like this...are you ready?

January 25, alone in my own home God Himself delivered me from years of woundedness, pain and anger. For the first time in my life I felt loved by God, a feeling so foreign I had to ask God what it was!

I am to be baptized on April 5, Palm Sunday, to celebrate this rebirth in Christ my Lord. As radical changes occur in my life, as I get exited as I read my bible, listen to teaching, I am challenged everyday to to live in HIS joy and strength! wow! I am presently involved in two studies, "He Is" by Beth Moore and "Breaking Free" also by Beth Moore The warfare is brutal, my mistakes our colossal, please pray!

Dave as some of you know, (especially those who have read "Safely Home" by Randy Alcorn) is in "seminary" right now. He is whipping through ministry CD'S and DVDS like crazy! His last couple have been Beth Moore "He Is" (Hebrews) and he is part way through Daniel. Dave would like specific prayer for his voice, we believe, along with others that this is possible. It is intensely frustrating for Dave not to be able to speak more clearly. Also his right hand that controls his wheelchair is becoming harder to move, please pray he continues to have mobility in this hand.

Dave is in a beautiful new care facility, Village at Mill Creek. It was only a temporary bed, as it is a private facility. We got confirmation this week that through the work of two very dedicated women, Dave has been granted the privilege to stay!!!! at no extra cost to us. I will try to include photos on next blog

Our two awesome kids continue to amaze us at their ability to function and grow under such adverse circumstances. To say life has been stressful would be a gross understatement...I am so proud of Josh that he continues to work full-time, live on his own and start a new business that has given him hope...Our darling daughter is so brave, her tenacity astounds me. She got her licence recently. Ashlea went on a 12hr "ride along" with our local Paramedics. It was a difficult day in many ways, but she loved it and may be considering it as a career.

Our pray request for our family is that we could find a place to rent where we could all be under one roof. Lately we have come to realize it is just too early for the kids and I to be so fragmented. In truth we need each other. We hope to find a place where Josh can still have some Independence, but be close by when there is a hot meal on the table! our lease here at the condo is until May 30.

Over My Head

2009-02-03T09:51:00.000-08:00

The title to this post comes from a song by Brian Littrell. I am unable to download it as I'm using a computer Ashlea has on loan from her school.

We have been living in our new home a little over 2 wks. We have not managed to get our desk top to follow us...soon I hope!

Ashlea and I are living in a condo back in Quail Ridge. It is so quiet and peaceful. The view out our windows is beautiful evergreens, then mountains...We are very close to the University...so we never no what may come...

Joshua is living on his own, with his two dogs! He's working one full time job and a part-time job. I miss him terribly. Last week he came by to make sure we were alright. My precious son knew we did not have groceries so he gave me money, I cried but could not take it...I assured him it was God's job, he said he worked for God...

Our children are precious to us. In spite of their pain, they manage to bless us...a gift, a ray of sunshine, a huge knot at the end of our last rope...We are so grateful for Joshua and Ashlea. I have told them since they were little that " I would love them always, no matter what" and though I have been tested...it is still true today...in this journey...through the pain...always, no matter what!

Ropes & Knots

2009-02-02T19:34:00.000-08:00

I apologize for the long time between posts. For those of you that like to read between the lines, it means life has been too chaotic, horrendous and sad. We have had a few bright spots, just enough to keep us hanging on. We are very sorry for not keeping in touch with those who email us...please do not be offended. We beg just a little more grace...we know we are at our limit!

Dave is settling in to his care facility, we purposely do not call it a "home", it just hurts to much. Dave is my Home and I am His as we journey together towards our heavenly Home! The facility where Dave is staying is new and it is beautiful! He is well taken care of, a favorite, of course! His friends are great! They come by all the time! It is well known Dave likes his Starbucks, sometimes they are stacked 5 deep in the refrigerator! Bless you guys! You are a knot in our rope, that helps us hang on!
This is a private facility where Public Heath owns 1 bed, please pray with us that Dave can stay a long while. He is on a wait list for an Acute Care Facility, which would be the equivalent of moving from a 5 Star Hotel to a Super 8! You get the picture? This Sunday Dave hosted a Superbowl Party for about 20 guys, the guest of honor? our son. Josh you are another knot in our rope...

There is a huge room, with a big fireplace and a large screen T.V. Lots of beautiful sofa's, chairs etc. Through double doors is a quaint country kitchen with round tables and chairs ulpostered in ivy print, it has become a tradition through two lovely families that we eat there every Sunday night together. Friends we have known for almost 20 yrs, this act of kindness is yet another a knot on our rope. Anyone who has known you that long and still loves you is truly a gift from God...

Everything we Need...January10,2009

2009-01-10T14:03:00.000-08:00

Today Dave move's into a full time Care Facilility...We do not have any words...only a prayer...

A Brother's Down

2008-09-21T06:46:00.000-07:00

It's been a tough week. Dave's mobility seems to be getting worse. In our family we call it a slide. Things can be going along good, then you start to notice little things...then something big bring us to our senses. Thursday nite at 4 :30 am Dave had a significant fall. He landed on the back of his head, but with such force, he split his head into a "v" shaped wound. He needed 10 stitches and his head is shaved at the back. Ashlea teases him and tell him he looks like he had brain surgery. So, we are recovering, it's getting past the "what-ifs" and implementing a lot of new safety measures. Dave's is safest when he is in his wheelchair. The "petite" quality of mom and dad's cottage poses a problem but most of all it is transportation we are in great need of. We are so thankful for the up coming Benefit on October 17. The amount of dedicated people to coordinate this is astounding! Thank you all in advance for all you are doing, for Dave and our family ...Blessings, Shani

He Gives Strength...Isaiah 40: 28-31

2008-09-10T11:10:00.000-07:00

Surely you know.

Surely you have heard.

The Lord is the God who lives forever, who created all the world.

He does not become tired or need to rest.

No one can understand how great his wisdom is.

He gives strength to those who are tired and more power to those who are weak.

Even children become tired and need to rest, and young people trip and fall.

But the people who trust the Lord will become strong again.

They will rise up as an eagle in the sky;

they will run and not need rest;

they will walk and not become tired.

The last four weeks have been...well...challenging for me. I won't bother you with the details... I have been existing in this "fog like" state, where everything hurts...and I can't quite seem to break through to the light...

On Sunday out of pure desperation, I went to church...the first song that was sung had the words of these four verses in it, the ones that had been my "friends in the fog."

More of a lament than a lamppost...

I have always thought I was more irritating than irresistible to God, yet here He was knitting together this little object lesson just for me...

I am loved by God!

Amazing!...

He gently suggested I re-evaluate what He values...

To understand His wisdom...

To know that God's strength is given where he sees fit.

To understand what I perceive as weakness might not be where God sees it

To trust that I will become strong again...

To know that God will allow me the perspective of an eagle when I am overwhelmed by life.

I need to rest in the promise that it is in God's timing that I will walk and in His timing I will run.

When I wait on God and trust His timing...I will not be weary...Shani

Grateful...Dave speaks from his heart

2008-09-08T13:11:00.000-07:00

I would like to express an attitude of gratefulness for the abilities I still have. Although many things that I used to do with out a thought are harder now, I am learning not to take them for granted.

Most of the time my legs allow me to stand up on my own and do not tire easily when walking. I can still walk/shuffle. I have been loaned an electric wheel chair to remain safe and mobile. I still have the freedom to get in and out of bed on my own. I am thankful I have not fallen in over a week!

I am still able to taste, chew and swallow food. I love the taste of food! Did I tell you that I love the taste of food!? In addition to eating, I agreed to a feeding tube. Since June I have regained 15 of the 45lbs I lost and am getting good nurishment and calories through the tube. I have learned not to bite any hand willing to help feed me.

My family and extended family have rallied around me with incredible support. Each one has had their own emotional journey while helping with my emotional and physical challenges. Together we have a new appreciation of the preciousness of this life with a fresh eternal perspective.

Many of YOU have blessed us with encouragement, prayers and gifts that have been a great source of strength. As Mathew 25 39-40 says "When did we see you sick or in prison and go to visit you?" The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' Thank you for being the hands and feet of Jesus for me in my time of need.

Blessings!

What Do We Need? Update

2008-08-31T14:44:00.000-07:00

Saturday Morning at the A&W a group of Dave's freinds & supporter met with Dave & Bruce Styles ( Dave's Brother inlaw). We went over the options on the types of vans that are out there,to find what would suits Dave's needs. Looking at numerous different vans, we selected a 2006 Buick Terraza with a Braun side , it is located in Las Vegas. This van has 10" cut out of the floor to allow Dave 60" of height while sitting in his motorized chair. This van allows Dave to sit up front in the passangers seat, or the second row. The plan now is to contact the dealer on Tuesday and see if we can purchase the Van for something around 32k.

PS: If you are new to this posting we are attemping to Lock down The Kelowna Art Gallery for Oct 17th for the evening of the fundraiser. ( Should know first of next week). If you would like to be involed in helping us with this event or would like to add some give brain power or Person Power. Call me and tell me where you would fit best.

Cam Manning

What Do We Need?

2008-08-17T10:32:00.000-07:00

To all Friends and Family,

As Dave's mobility has become more limited, the need for feasible transportation has come.

So many of you have been asking how you can participate in a tangible way.

We are currently looking into procuring a vehicle that is already fitted to a wheelchair capability and will also accommodate the family.

The most reasonable & suitable application that we have found so far is a 2004 Astro Van with very low mlg.

The cost is approximately $24,000.00 plus taxes.

If you wish to assist in this project, please contact Cam Manning @ 250-863-9511 or Bruce Styles @ 604-504-0018 We hope to confirm the purchase of this vehicle before the end of August.

Thank you so much for your consideration and support.

A Quote, William Paul Young "The Shack"

2008-08-14T13:27:00.000-07:00

I have had the pleasure of meeting and hearing Paul speak at our church...it was a God moment.The most extraordinary thing I noticed about Paul...was his compassion.

This quote blew me away and changed my perspective... eventually my soul...

..." just because I work incredible good out of unspeakable tragedies doesnt mean I orchestrate the tragedies. Don't ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn't depend on suffering to exist, but where there is suffering you will find grace in many facets and colours."

Speaking of "grace in many facets and colors". This is Lake Powell in the Glen Canyon, the ultimate waterski destination! It had been a fifteen year dream of Dave's to go there. Of course it was bittersweet, but the beauty and the presence of an Almighty God replaced our tears with a reverance for the awsome creation we were able to see. We were and are still so thankful to all the people who made it possible for our family to take that vacation in March.

Who new the Grand Canyon would be cold!? It's in Arizona! Well, Ashlea did! She just failed to tell the rest of us! She graciously shared her winter jacket, so all is forgiven! Ashlea planned all our "road trips" and did a great job! Our base was Scottsdale, at a lovely home loaned to us by friends in Calgary. The previous day we got sunburned having coffee outside by the pool! As you can see here we are a "little" chilly.

Here you can see two "Great Wonders of the World". One being The Grand Canyon. The second? Two teenage siblings getting along. And we wonder if there is a God!!???

Dave's "Prayer Spot"

2008-08-12T19:12:00.000-07:00

The favorite part of our time with Dave was spent up high on the edge of the mountain above their residence, a place that overlooks the lake with a breathtaking view. This place was very special to Dave. This was a place where Dave clearly felt closest to the Lord. This was Dave's "prayer spot".

The opportunity to sit and commune with God and Dave together was, for me, a truly phenominal experience. We laughed and cried and prayed and read from God's word.

It became so clear to me as we sat there talking together that this was a man who was truly at peace with his situation. In fact, it became evident quickly that Dave has a thankful heart to his Lord even in this very difficult trial.

Thank you Dave for setting the bar so high for me and others as to how grateful we need to be even in the face of life's worst storms.

Glenn & Benita's Visit

2008-08-12T09:09:00.000-07:00

Benita and I have spent the last three days with Shani, Dave and their family. What a life altering experience! Dave, as always, as a result of his faithfulness to Jesus, is the tower of strength that truly reflects the Holy Spirit's power. Dave, your family is hurting but I don't think they could have a better example of a man of faithfulness through a traumatic life struggle.

While there are many sad aspects of your desperately difficult situation, our God continues to show His faithfulness in and through your life that will have immeasurable spiritual affect on those who see you.

We had so much fun talking, eating, praying and laughing with you these past days and as I told you, I have been forever changed as a result. I have always loved you brother and your family is so awesome.

My council to you is this; no more corn on the cob (puree and take through straw instead) take it easy on the dancing to love songs with Shani and no more 4 wheeling in the gravel with your wheel chair!

My verse to you and your family is 2 Corinthians 4: 16, 17 and 18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

Thank you for having us in your home and for the incredible blessing you and Shani and your family are to us.

Glenn and Benita Williams

The Good, The Bad, The Ugly...Part 2

2008-08-05T14:55:00.000-07:00

After the shock wore off I did feel God sustaining me, just the simple fact I was still breathing was proof enough of that! but a verse kept running through my head as I was neck deep in the Okanagan Lake, Ephesians 3:16-21(this is the "good" part) "I ask the Father in His great glory to give you the power to be strong inwardly through His Spirit. I pray that Christ will live in your hearts by faith and that your life will be strong in love and be built on love. And I pray that you and all God's Holy people will have the power to understand the greatness of Christ's love - how wide and how long and how high and how deep that love is. Christ's love is greater than anyone can ever know, but I pray that you will be able to know that love. Then you can be filled with the fulness of God. With God's power working in us, God can do much,much more than anything we can ask or imagine"! This verse and the support and prayers of others sustained me for a little over a month, then the bottom fell out of my world. I was told it was grief, what I know is, it was very dark, very deep, very angry and very ugly. I felt totally and utterly alone. I could not funtion at all. I wanted to die. The God I thought had abandoned me, had not, the people I pushed away still prayed, people became the hands and feet of God. God, well He patiently waited...and I came back home...with a new perspective and a thankful heart. Thanks to all of you who have been so patient as I have wallowed around in the muck! To my parents and Dave's who have truly been there and always will be there through "the good, the bad and the ugly". Thanks to my children who through their own pain are working their way through forgiveness...and to my husband who had already given it before I asked. And continues to do so everyday...I am blessed.

The Good, The Bad and The Ugly

2008-08-05T13:23:00.000-07:00

You had to know it was coming. Those who know me well, know I speak with a "heart" honesty. I believe you deserve no less...This year has been emotionally brutal. It has shaken me to the very core of my faith, things I thought I knew became questions; Did God "really" love...me? Was He faithful "enough"? Did I trust God in "all" things? I can only speak for myself here, I hope one day you can hear the whole family's perspective. July 11Th, 2007, the worst day of my life. I was told that my best friend, my husband, the father of my children had 6mths- 5 yrs to live. There was no cure, no way to fight, the very nature of the illness was too cruel to comprehend. A numbness set in, like shock. We told the kids, my heart shattered. I wanted to be the one to die...how could my children possibly survive without the nurturing wisdom of their father. In our family it was daddy the kids came to at nite. It was Dave who made their lunches and drove them to school. It was Dave who was at all the games and youth group weekends. It was Dave who took Josh on "sleddin" trips, taught him how to ski...errr board, on snow, on water. Josh and Dave went to a boat show in Toronto and got their boating licences when the boat was still a dream...we lost the boat last week. In some family's the mom is the glue that holds everything together, in our family it is the dad...we were so lost.

What About the Kids?!

2008-08-05T09:32:00.000-07:00

Joshua and Ashlea have definately had their separate ways of dealing with Dave's diagnosis. I would not to presume to speak on their behalf, but I can tell you what's going on in their live's!

Joshua graduated this year! We are so proud of him! He has put his various plans that would take him away from home on hold and found full-time employment close by. It is so good to have him near by, he is happy with his job. It is allowing him to buy and fix up his vehichle. I think the sound system is worth twice what the car is, but I'm told that's "normal". Fixing his car means spending time with grandpa and getting really dirty! My mom had to take a picture yesterday, much to Josh's disgust, because he reminded us of the first time he played in the dirt as a baby!! Joshua had the oppurtunity to learn American Sign Language in grade 12. He not only loved it, he excelled at it and has the dream of learning more. Then he would like to go back to Ensenada, Mexico and work in the deaf school there. I love when my children have dreams! It has to be one of the most important things they learned from their father.

Our precious daughter is getting too beautiful to let out of the house. Fortuate for us, she is incredibly intelligent as well! She gets that from Dave's side of the family!! Ashlea is in grade 11 this year. She is an honor student and very involved in ...life! Ashlea is in several outreach programs at her school, including 'LifeSavers', 'Link crew' and planning on a few others. 'LifeSavers' is a group that lends a hand to fellow students suffering with suicidal thoughts or attempts. 'Link crew' Helps grade eights intergrate into their first year of highschool. She sings in the woship team at church, she is a wonderful singer/songwriter, music is her dream, her life. Ashlea is my sunshine and my rain, sometimes she is my storm... but a mother could not love a daughter more...

How is Dave Doing?

2008-08-03T10:19:00.000-07:00

We are pleased with where Dave is. Some of you know that typically ALS starts from the feet up, or the head down. Dave's is the head down variety. The ALS started in Dave's hands/ arms and throat/voice. As of today he has lost complete mobility in his arms and hands. His voice is good somedays, not so good other days. The phone is becoming almost impossible, even for those who know him well. The good news is Dave's respitory is strong! This is very good! The mobility in Dave's leg's is diminishing, along with his balance. Although we have an electric wheel chair ready to go, Dave is using it more as a quad! Yes, he has gotten it stuck!, had a tumble! and managed our very steep, gravel driveway! He had quite a bit of "road rash" but came up smiling! Saying,"You should see the other guy"! He needed stitches on that very stubburn chin of his!

A Year of Blessings...

2008-08-02T16:03:00.000-07:00

Dear Family, Friends & Friends we have yet to meet...

It has been just over a year, July 11th, that Dave was diagnosed with ALS. What a year! There is so much to say, yet where do I start?
I want to begin with THANK YOU. A word we say a hundred times a day, but it in no way diminishes the sincerity in this family’s heart. When we think of the hundreds of people that have spoken into our live's in this past year we are humbled. I am sitting here trying to put into words what you have done... as tears fall...I realize there is just no way I can express the million, yes, the million things that have been given to us. From the small things to the huge things, and things that you thought might have been small were often the things that meant the most! One thing I know for sure...this Family would not have survived without YOU. We are filled with gratitude. Thank you for being the hands and feet of Jesus...