Update on Kirsten's ALS (Lou Gehrig's disease)

The LifeFunder is here. By God's grace we met the goal and we are grateful to LifeSite News for convincing us to do the fundraiser.

Easter Week, March 27, 2024

Happy spring friends!, and blessed Holy Week!

It's been 3 years since ALS symptoms first started manifesting. Being in the 70th percentile of speed of progression, I think I'm doing pretty well... for the past 16 months, I've been given a prognosis of 4 months. It's an adventure.

I'm in my comfy ROHO bed full time. I can't move any muscles in my body other than a few facial muscles. I wear my bipap mask full time, which delivers precious air to my lungs. The G-Tube allows me to get nutrition, and my computer screen allows me the gift of communication. It gets tricky when I need my head turned in order to use the screen so I can communicate. At that point I have to resort to a vacuous grunt noise to get someone's attention, which sometimes sends a chill down David's spine. If it's a good day, someone will understand what I need when I flash my eyes quickly between them and the screen. I have mostly good days.

l'd be remiss if i didn't mention the dreaded Cough Assist machine, 1-2 hours a day of vacuum torture to force air into my lungs and then suck it out at high pressure to remove mucus from the lungs so I can breathe freely. Recently, I've been experiencing bouts of coughing spells after cough assist  sessions  which tells me the lungs are trying to deal with a buildup of mucus.  The situation is getting  interesting! 

So far, the extent of my pain is just discomfort from certain pressure points, which can be alleviated with a simple ROHO adjustment. So not a lot of physical pain. The emotional pain, however, is considerable, from being unable to connect to family in a tangible way.

Recently, I've been thinking about an impactful book I read in my 20's, "Man's Search For Meaning" by Viktor Frankl, a Holocaust survivor and Austrian psychiatrist. He writes how the Nazis stripped them of their freedom, belongings, sleep, physical comfort, even personal space, and severely rationed their food. And yet, despite all the external deprivations, they could not take away the prisoners' power to choose... to choose to give the crusty piece of bread kept hidden in their pocket to a neighbor, to give their coveted cigarette away.

He illustrates the power of the human spirit to go beyond onerous circumstances. It reminds me of John Paul ll's comment in "On the Christian Meaning of Human Suffering":

"Suffering seems to belong to man's transcendence: it is one of those points in which man is in a certain sense "destined" to go beyond himself, and he is called to this in a mysterious way." Encyclical 'Salvifici Doloris'

Frankl developed a therapy, called Logotherapy, which he was able to test while in the concentration camp. The theory is that a person's motivation to live during times of suffering is tied to the meaning in his life. So if there is higher meaning to one's life, there will be a higher motivation to live, despite the suffering. If there is no meaning, there will be a low motivation to live, resulting in despair. Another way of putting it:

D = S - M

Where despair is suffering without meaning.

As a Christian, my suffering is inextricably linked to the Great Meaning Jesus ascribed to it. So I like to think of it in these terms:

S = M - D

Where suffering is meaning without despair, because of the hope we have as Christians when we pick up our cross and follow Him.

A friend sent me some statements about suffering that Jesus made to St Faustina, which I found edifying:

"During Mass, I saw the Lord Jesus nailed to the cross and in terrible agony. His Heart gave a quiet groan, and after a while He said, “I thirst, I thirst to save souls; O My daughter, help me save souls. Unite your suffering with My Passion and offer it up to the Heavenly Father for sinners." (p. 500 par. 1032)

"You are not living for yourself but for souls, other souls will benefit from your sufferings.” (p. 75 par. 67)

"I need your suffering for the salvation of souls." (p. 719 par. 1612)

To see these quotes in the Diary, go to www.faustyna.pl, click on the diary, enter page number, look for the corresponding paragraph number.

My eyelids are working well today. I was able to do a couple of short emails this morning as well as a portion of this blog. Some afternoons, it's all I can do to keep them open, those tiny muscles are just too tired. Makes for an interesting time when Shannon, our evening PSW, arrives waiting for direction from me. It takes a few minutes of them being closed, and then they're good to go for another little while.

Today Adessa finished her official Grade 2 math curriculum. Rosie helped a lot with that.  After all this time with us, she's like one of the family now.  I still marvel at God's goodness to us through Rosie's temperament and many gifts and talents.

Our 3 PSWs, Shannon, Juanita and Kandis, have taken a personal interest in me and we've become friends.

I'm very thankful for David, especially at night, I can no longer roll my head to hit the buzzer, so he sleeps beside me on a mattress on the floor in the living room. I've been sleeping through the night fairly well, with the occasional adjustment for mask or temperature issues. Some nights are more difficult  than others. 

Well friends, that's it for now. Have a blessed Easter season

Kirsten

David Adds

Its amazing that God has kept us both going. For me, I think part of the fortitude comes from watching Kirsten fight for her life every day. The mystery of Christ's suffering during Holy Week has taken on a whole new meaning this year. We hope to go all the way here at home without hospice. I love the line "don't quit before the miracle happens." I think it pleases God that we continue to pray for an old fashioned biblical miracle, regardless of where God decides he wants Kirsten, with him or with us.

St. Paul says "In all things God works for the good for those who trust in Him" (Rm. 8:28), and we do trust him. We feel buoyed up by the incredible people praying for us. I drive into town to Mass most days, and pick up communion for Kirsten, which is the only thing she has put in her mouth for over a year (a small piece). We do the Rosary as a family most mornings.

My business has been on hold for 3 years to focus on Kirsten and Adessa.

Adessa turned 8 on Feb 23 and seems to be doing well. She knows mommy's full story and seems to accept it well for now. She's ahead in all of her home school subjects. She wrote 3 novels (30 pages each) which Kirsten wants to send for self publishing. Adessa understands and speaks French and she reads French kid's novels. My sister-in-law from Quebec says "she sounds like us!" She's a lector in Church and is doing cursive writing, reading adult level English fluently, typing, excelling in her piano lessons, singing in Church and starting singing lessons. She truly is a little miracle. I wonder what God has in mind for her.

I drive Adessa into town for ballet, silks, acro, and gymnastics. While I'm waiting in the car, I work on my laptop on two new sections I've added to Catholic Bridge (Apocalypse and The Case Against UFOs). I've added about 40 articles over the last 6 months. It helps me think beyond our troubles here at home.

Below is the anniversary message I wrote to Kirsten earlier this year. As I wrote it, I realized that a dream Kirsten had 12 years ago has come true. Her ALS journey is part of its bittersweet fulfillment.

David's anniversary message to Kirsten

Dear Kirsten: It's our anniversary today. Thank you Jesus, for giving us another year. We weren't sure ALS would allow us to celebrate our previous anniversary. I'm so grateful to be married to you.

You had a dream before our marriage, where Jesus showed you that the life issue would be your Life Song.

For the first part of our marriage, you joined my prolife ministry and healing. 

• At Rachel's Vineyard you became spiritual step mom to my unborn children who's abortions I facilitated.
• You played keyboards with me at the March for Life, my Prolife CD was serendipitously called Life Songs.
• You stood with me at Silent No More and came to high schools and university campuses with me where I gave my testimony.

But then you grew wings and became a "Life Song" yourself, and I had to scramble to keep up with what was happening with you.

• Your prolife ministry began on a painful note with 3 miscarriages, in solidarity with thousands of women who want children but can't.
• 3 weeks after a powerful encounter with Our Lady of Czestochowa, in Poland - we were pregnant at 48 years old... and 3 days later you were diagnosed with cancer while pregnant.
• You modelled your prolife witness to the doctors, clinicians, and everyone involved in your care when you refused chemo after cancer surgery, which was under local anesthesia, to protect the pregnancy.
• Our baby was born healthy and perfect as a result of your saintly witness.
• You became a full time mom, at 48 years old, and showed that faith is the answer for couples having trouble conceiving, not IVF.
• You brought my tragic witness of abortion full circle, into a prolife story of redemption and hope with the birth of our daughter Adessa who is now a beautiful, smart, talented, perfectly healthy 8 years old.
• You healed from cancer through natural means after surgery.
• You became a Montessori teacher to breathe life and wholesome education into children, as an alternative to the publicly funded schools who have espoused an anti-life ideology foreign to our faith.
• You protected our daughter from the battery of vaccines that regularly use aborted fetuses. She became an example of a vaccine free healthy miracle kid.
• Then ALS grabbed you, and you turned that into a witness against Euthanasia (MAID) ... and your story was seen by thousands on LifeSite News.
• You've outlasted the ALS patients in our area who were diagnosed at the same time. They "tapped out" with MAID, but you live on as a witness to how perseverance and suffering are a pathway to sanctity.
• Our daughter sang a tribute to you in "A Jeweled Sword" music video and on Christian radio.

You modelled your message, not out of clever apologetics, scientific data, or even a testimony, but out of your ... LIFE. 

Yes Kirsten, the dream you had so many years ago that the life issue would become your "Life Song" came true. We know not what the future will hold but

"Jesus, we trust in you!"

Wherever He takes us will be an adventure, and I'm proud to make this journey with you and to be part of your "Life Song". Happy anniversary!

Blessings,

David

Dec. 25, 2023

Merry Christ-Mass friends! 

Kirsten's message using her eyes to operate computer

It's shaping up to be a brown Christmas here, with no snow on the horizon. My mom was supposed to be coming out from Alberta for the holidays, but my dad's health took a turn for the worse, and he passed away Friday, Dec. 22nd. He was diagnosed with Alzheimer's 10 years ago, so it's been a long journey for both of them. Before his illness, he helped a lot of people, volunteering with an evangelical inner healing ministry, Ellel Ministries. Ellel was instrumental in my own inner healing as an Evangelical (and inner healing still continues).  

Please pray for my mom and dad at this time.  (update! My mom is coming on Christmas Eve!) 

My life continues in my bed since the beginning of November. From the get-go, I was provided with a special mattress consisting of ROHO, individual rubber cells filled with air, to alleviate pressure sores. I'm spoiled, compared to mystics like Anne Catherine Emmerich, Luisa Piccarreta or Marthe Robin, who probably had lumpy, cotton mattresses to sleep on 24/7 for years. They were always my heroes, but this personal experience bumps them up to a whole new level in my eyes.  

The most detestable part of my day is sessions with the cough assist machine. Rather, I have a love-hate relationship with it, because if i didn't use it, i'd be dead (without God's grace). Once or twice a day I subject myself to about an hour of the sucking out of my lungs, mucus that has collected (as a result of lungs slowly collapsing, the mucus cushions them).   If not kept in check, the mucus works itself up the trachea, causing coughing and choking. 

At the end of one particularly hard day, after brutally long sessions of cough assist, feeling like I was drowning in mucus, and a frustrating time attempting to still be a mom to my daughter via the computer (which I operate with my eyes to talk), I cried out to the Lord, begging Him to shorten my days. I just didn't want to take it anymore. Up to that point, I had always prayed, "Lord your will be done”, and managed to push through.  This day, however, it wasn't that I couldn't pray that prayer, but I didn't want to. That night there was lots of crying, which loosened the bipap muzzle on my face, so David didn't get much sleep either, coming to rescue me from my multiple mask blowouts. 

The next morning, despite a terrible night of sleep, I felt curiously refreshed, and even optimistic. For some reason, my thoughts turned to Jesus' words in the garden, "My Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will." Even Jesus asked for a turning away! (According to the revelation He gave to Luisa Piccarreta, in the 24 hours of His Passion, “this cup” referred to in the 6th hour, is the agony of seeing the loss of life of the multitude of souls who rejected Jesus’ and the Father’s Life.)

Then a  blog post arrived in my email  that same day.  It felt like it had been written for me,  Hold on a Little Longer. Since that time, things haven't been easier, but there's an undeniable grace present that has lightened the load, both physically and mentally. (Good thing, as we looked into the hospice here, and apparently, they haven't had an ALS client in years, since 2016 perhaps when euthanasia was legalized in Canada).

To send you off on a lighter note, this is poignant for me, as my dad loved music, and would sing along heartily with the entertainers that came to his care facility. Enjoy!

Love and blessings, 
Kirsten

David’s note

Our journey is coming to a climax with ALS requiring many daily and nightly interventions to ensure Kirsten is comfortable and has unobstructed breathing. She's in bed full time, wearing a bipap mask 23 hours a day, mostly  to alleviate mucus production, but also to help with breathing. She can't move her body, we still feed her through a GTube in her stomach and she is non verbal. Her eye- controlled computer is a blessing. We have PSW help in the early mornings and late afternoons 6 days a week, and we hired Rosie for 22 hours a week, which is spread over 4 days. So far Kirsten has declined all medication, and plans to go the entire distance without medication.

I continue to care for Kirsten on the night shift and I fill in the gaps in her care during the day. These days I eat standing up and sleep with one eye open. I run Adessa into town for her dance, gymnastics lessons, etc. She is progressing quickly in piano lessons. We are just finishing reading "A story of a Soul" in French by St. Thérèse de Lisieux. Rosie and I teach Adessa's home schooling. I go into town to Mass and bring communion to Kirsten most days. I'm still learning how to be a "country boy" taking care of a 2 acre property and a house.

Whenever I'm on the edge of burnout something seems to happen where I get buoyed up, or someone pitches in and helps, and I've come to believe God never gives us more than we can handle. But I have to confess I can fall asleep whenever I stop for a moment during the day ... for instance, in Mass :(

It's been a personal journey that places me up against areas of myself that God has wanted to work on. It's very difficult and tiring for all of us, but fruitful. We continue to pray for a miracle, and indeed we think the prayers of many of you have given Kirsten this extra year and has brought us to this Christmas together which we didn't anticipate sharing with her. 

We will try to keep Kirsten here at the house for her entire journey. The hospice has no experience with ALS and we want Adessa to continue to wake up/go to bed with mommy there.

When I'm sitting beside Kirsten or winding down at night I sometimes pull out my laptop and pick away at a few articles I've been writing on the Apocalypse for our Catholic Bridge website. Feel free to check them out.

Many Blessings
David

Nov. 1, 2023

David, Kirsten and Adessa (dressing up for All Saints Day as Elizabeth of Hungary)

KIRSTEN writes:

Hi Friends,

Gold-colored leaves are still falling around us. I don't think they lasted this long last year. I'm still hangin' around too. For a while, 3 months actually, I wasn't using bipap (forced air) at all during the night. My breathing had plateaued somewhere around May. Just a couple of weeks ago however, there's been changes, so upon the advice of the nurse last week, I'm back to using bipap at night again to support my lungs and heart. Whenever I feel my heart racing, which happens more often now when I'm in the chair due to legs not being elevated, I'll put the bipap on during the day. By the time we get this newsletter out, I expect I won't be using the chair at all.

Despite the increasing difficulties for everyone involved, not just myself, those helping me are pressing in even deeper. One PSW has moved on to other employment, but she continues her work with me. Another PSW has picked up four additional evenings which has lightened David's load. Rosie, our hired help and friend from church, continues to amaze me with her patience, as I have to laboriously type simple messages throughout the day. There's constant juggling required. At any given moment, multiple times in a day, she's got scenarios such as me needing a headrest adjustment, Adessa needing help on the piano, sauerkraut waiting to be jarred, a casserole needing to come out of the oven, all simultaneously. It's a miracle she's still with us.! I think my greatest appreciation is for her living faith, and for her care for Adessa. She instinctively knows when Adessa needs a big hug or tickles. She'll be a very good mom one day. Oh, and did we tell you she can sing ? Hear her beautiful voice below.

The other week Adessa said, "Rosie, your laugh is poisonous", to which Rosie promptly replied, "ummm, I think you mean 'infectious'". More laughter from yours truly, mostly on the inside. These are special years as we hear vocabulary used in everyday speech that she gleans from book reading. Recently she was talking with her uncle Rod on Facetime. They moved on from math to talking about his age, and he asked her, "but with age comes what?" Adessa tentatively replied, "weakness?" [wince] Guess we need to teach Her that other "w" word.

About book reading, David recently had an inspired thought to read with Adessa St Therese de Lisieux's "L'histoire d'une ame'" (Story of a Soul) in the original French. They'll take turns reading the french paragraphs out loud to one another. Google translate is nearby to get the unknown words. I think they're almost done the book. She's enjoying it. She continues with piano, acting, gymnastics, ballet. Her delight and highlight twice a week is playing imaginative scenarios with "auntie" Linda (Robillard) over Facetime. Adessa has a blast, whether it's barbies or horses or dolls. Judging by the laughter we hear, auntie Linda is having a good time too.

Rosie and St Elizabeth of Hungary with All Saints Day cupcakes.

Remember the woodchuck drama? We got him! September 1st. Well over a month from his first appearance. But not before we trapped our first skunk. The woodchuck preferred a larger trap, something a little more conducive to consequences of garden raiding.

While on the the topic of wildlife, we saw our first wild fox the other day. When I'm seated upright in my hospital bed, I can see out the kitchen window from across the room. It's a beautiful view of a humongous Canadian Shield rock with a statue of Our Lady. David and I were praying the rosary and I saw a movement outside. There, on top of the rock, was a fox, momentarily surveying its surrounding. Even when David stood looking out the window, the fox coyly returned his look. It lingered briefly, turning this way and that, and then he was gone. (check out the camouflage)

It reminded me of the passage from Song of Songs' (2:15-17).

Catch us the foxes,
the little foxes,
that ruin the vineyards—
for our vineyards are in blossom.’

The fox story doesn't end there. He poked his head up on the other side of the yard.

In these times, vigilance is needed more than ever over our spiritual life. Stay close to Jesus and pray the Rosary. We recently had a good kick in the pants from Fr. Mark about this very thing. All of this is good, but check it out at the 3 minute mark.

I had a beautiful dream last week, so short, just a glimpse, but so hope-filled ...  David and I were back in Ottawa to show our friends the goodness of God, we were ballroom dancing ... 

God bless,

Kirsten. 

David adds:

Adessa and I went down to Life 100.3 Radio in Barrie, Central Ontario's Christian Radio Station, for an interview and they played a clip of her song "A Jeweled Sword" about mommy. Mommy got to hear Adessa talking about her courageous mom on the radio. Here's the interview. Also, CHRI 99.1 radio (Ottawa) has added the song to their catalogue. Friends in Ottawa can request it for the lunchtime request show (613-247-1440 call CHRI anytime).

With my recording studio set up, I finally recorded a song I wrote for Fr. Bob Bedard in 2011. As Kirsten mentioned above, Rosie did a great job on the voca ls. Adessa sang back up along with Cameron and Sara Turner who happened to be in Muskoka the week I was recording. This is a draft mix, still a few things to add and change. I've put up a page for the song here.

I found an old unfinished recording of a song called "We've Got to Organize" which just had my vocals and acoustic guitar. So I added instruments and background vocals by Adessa.

For those who haven't seen Adessa's video of "A Jeweled Sword" singing for Mommy.

Music has been a way to clear my head during this very difficult time. Although I must confess I burned the midnight oil with headphones in the wee hours a few times, which was complusive.

Some bad news

For those who have been praying for us, since we started this edition of our newsletter, Kirsten has crossed several important milestones and the nursing team has given us "the talk". They delivered the "end of life" symptom relief package yesterday with drugs to make her more comfortable during this process. In Kirsty's signature courage, she says

I won't be taking anything. Medication. I'd rather suffer than be in comfort. So Jesus gets his souls.

God, if you are planning a miracle, now would be a good time. Do I sound like the apostles in the boat during the storm while Jesus is sleeping? (Mk 4:37-40)

The world and the Church are rushing headlong into crisis as we face this existential crisis in our family. However, let us not lose hope. The age of miracles is still with us and Kirsten's life is testimony to that.

Many Blessings,

David

Aug 8th, 2023

Dear Friends

We hope things are well in your neck of the woods.

My condition has been fairly stable. The latest milestone is that my neck muscles have weakened and I can't use my high tech "head array" (switches and panels around my head) to operate my wheelchair. Now I'm totally dependent on David and caregivers to operate the chair with the joy stick.

My breathing has been fairly stable since May. I thought by now I'd be wearing my BiPap hose strapped onto my head for a portion of the day, a veritable Ms. Snuffleupagus. Instead, we've had a 3 month plateau, which I think is highly unusual given that I'm in the 70th percentile for speed of progression of this disease. So thanks for your prayers, I don't know what other explanation there could be.

As a family, we're still taking it one day at a time. Some days are incredibly hard and others seem to breeze by. David continues to put his business on hold as he cares for me and Adessa. His background working with people with disabilities has been really useful. His company is called CanAdapt Solutions and we have certainly needed to "adapt", constantly adjusting technical things on my electric wheelchair and on my computer as my condition changes. I continue to use my eyes to operate and type on the computer.

Adessa has been enjoying gymnastics, VBS, and swimming lessons. She has NOT been enjoying math flashcards. We homeschool her. We're lucky because she continues to excel in language arts, reading at almost an adult level in both English and French. She loves her history and science books and is doing cursory writing. Our living room has become a practice zone for her walking handstands. She seems to be handling my condition well and still enjoys crawling up onto my wheelchair to read a book or watch videos with me. We play Chutes and Ladders as a family and she rolls the dice for me.

We thank God everyday for our three PSWs, and private help we've hired, and friends from Church who mow our lawn and water our garden.

Last week, one of our PSWs came in announcing, "You've been breached! " referring to a woodchuck (groundhog) who has, under our noses, and over the course of the weekend, NOT been chucking wood, but rather clearing out our garden that my mom and sister, Laverne, planted. We've been trying to coax him into a trap, so far to no avail. This morning at 6 am, David my city boy was crouching behind his hunter's screen with a pellet gun - not wabbit - but woodchuck hunting. The wascally creature refused to reveal himself. We'll try a bigger trap. The drama continues. In the meantime, our previously beautiful garden is mulch!

John Henry Westen (LifeSiteNews) and his cameraman, Myles, came to our home recently to interview us which was an honour and surprise. Adessa sang her song for them and they video taped it. The generosity from LifeSite readers has been hugely edifying, like a wind in our sails. For all of you that were involved with that, a deep thank you.

David remixed the song "Jeweled Sword" and made a video of it using LifeSite footage and home videos. CHRI in Ottawa has said they'll feature the song on their lunchtime request show.  We've included the video and the full LifeSite interview below.

I completed a focused six month season of prayer at the end of June. I've allowed my prayer time to become distracted throughout the day with blips of social media so, that, coupled with heavy eyelids due to poor sleep, has made for a spate of discombobulated prayer days. With the removal of my wheelchair head array forcing me to stay put, I expect to get back on track.

With the unprecedented convergence of so many storm clouds collecting on the horizon of our world, here are a few "watchmen on the wall" that we think are putting the pieces together well: Fr. Jim Blount, Ralph Martin, Fr. Mark Goring, Fr. Chris Alar, Mark Mallett and the site he maintains that tracks seer's prophecies, and also Daniel O'Connor who, incidentally, will be in Ottawa September 30. 

Keep the faith friends! We love you all and keep you in our prayers.

Kirsten, David and Adessa

Here is the video of the song Adessa sings

Here is the full interview

May 2, 2023

Spring Greetings!

Shortly after my last email in December we hired a friend to help us out full-time, about 30 hours a week. Previously we had her only 4 hours a week since last spring. Her and her husband go to our parish. Her former employer, another family, had moved out of the country, so she was praying about next steps. It's been a total God-send having her with us, Rosie is such a gift to us in this difficult season. Adessa loves her dinners and banana bread, and David appreciates the respite from PSW/nursing duties during the day (Rosie is also a trained PSW, one of her many talents).

A funny story: Adessa was in the kitchen helping Rosie chop veggies one day, and they were chatting away about confirmation saints and dressing up for All Saints Day and somewhere around there Adessa says to Rosie, "Well you're very pretty you know. You are! You're like a modern-day Bathsheba."

Rosie and I had a good laugh, just writing about it has me laughing again. (Sorry Rosie, I couldn't resist)

We have about 16 hours a week of government-funded PSW support in the mornings and a couple of early evenings. These three ladies are becoming friends, I'm so grateful for their kindness and service to our family. We've also hired some weekend morning help, a retired lady from the Baptist church who was a PSW. Her first day she wore a T-shirt that read, "I was shipwrecked but Jesus saved me." Perhaps her intention was to evangelize us when she learned we were Catholic, but upon arriving, she soon realized that we were also saved from shipwreck by Jesus.

As to my health, I thought my condition would be a lot worse by now. The intercostal and diaphragm muscles (which keep my lungs breathing) are weakening, but it doesn't seem to be at the same pace as the loss of function of other muscle groups (legs, arms, etc.), which I lost last year. However, these last two weeks I’m finding that I am coughing a lot more which indicates the muscles are weakening. Soon I will have to use my BiPap breathing machine during the day (the next big milestone). Four times a day, I use a machine that forces air into my lungs to exercise them.

I eat and drink using a G-Tube directly into my stomach. The only thing I take in the mouth is the Eucharist which David brings me most days. Adessa was the best at translating "ancient mommy tongue" as she calls my speech, but now even she can't understand me, so I wheel over to my special computer to type out my communication using my eyes on an on-screen keyboard, which I'm also using to type this letter.

These past 6 months the computer (pictured in the photo above) has been a blessing but also frustrating to use. It's on a single pole with 6 long legs that splay out at the base like gangly spider legs that always seem to get under my wheels. Needing to communicate something, I wheel over to the computer, and David cringes and blurts out "careful!" as I run into the legs with my 350 pound wheelchair (it's a $16,000 computer, but we're on a monthly lease). So far there hasn't been any spider leg dismemberments.

As for my day-to-day activity, the long days of prayer continue. It's not something that originates from me, I'm just a little vessel that the Holy Spirit prays through.

David continues to keep his business on pilot light, a few hours a week with the ocasional burst of activity. He takes care of me evenings and pitches in during the day as needed.

David's mom passed away in December at almost 93 years old. She had been doing Rosary and praying with us. We had a Mass said for her after her passing and David had an experience in prayer that convinced him she is doing fine now. She also left an inheritance which helps fill in the gaps with David having to turn down work. Another gift.

Adessa is 7 years old now, and is progressing well with homeschooling under Rosie's guidance (another talent). Her reading in English is almost adult fluency and her French reading and comprehension and pronunciation is near fluent. But her French speaking and grammar is not at that level. We encourage our francophone friends to speak French with her when they visit. David takes her to ballet class and gymnastics and she has online storytime and acting lessons. At Mass she is an altar server, to have some responsibility and get close to the action at the altar. So far she appears to be managing our ALS journey without signifcant effects.

During these last 2 years there's been a whole lot of discombobulation and letting go. We’ve been stretched in ways we never could have imagined. Just when it seems unbearable or unsustainable, some little miracle will occur which gives us relief (like a pressure valve) before we are stretched again. The Psalms talk about His mercies that are new each morning, and we've experienced that with one another in tangible ways, after many difficult and exhausting evenings at the end of long days.

We can’t help but notice the parallel between our journey with this disease and what the world has been going through these last 3 years, both are rushing towards a life and death crisis point. Maybe that is the value of our journey, that we be at a point of total abandonment to Jesus. We hope the world does the same.

Over the Easter weekend David wrote a song for me with Adessa's help. He dusted off his music recording equipment after 15 years of non-use and made a recording with Adessa singing. Back in the music, I've seen a bounce return to his step and a gleam to his eyes. Rosie lended us her angelic voice for background vocals in the chorus. The words are below and recording is attached.

We hope you and your family are well. Be assured of our prayers for you… we love you all.

God bless,
Kirsten, David and Adessa

Here is Adessa singing "Jeweled Sword" about Mommy.

Jeweled Sword (MP3)

Our LifeFunder page for donations is here

A Jeweled Sword

I climb up on your wheelchair
Kiss your cheek and brush your hair
Mommy its even hard for you to breathe this air

I read you stories of the saints of old
The greatest stories ever told
Mommy I think you're the greatest saint I know

You're a miracle, I'm a miracle
I love you with all my heart

(chorus)

You soar, like an eagle in the spirit
You roar, like the lion of Judah
You're a jeweled sword
In the hand of the Lord

You're grateful for every breath you breathe
To have me sitting on your knee
So many people praying you will be set free

We've seen miracle, upon miracle
We pray there's more to come

In Heaven the battle was raging
Michael cast down satan
Down here on earth you're a sword in this fight
The victory belongs with the children of light

© 2023 Catholic Bridge

Jeweled Sword (Full version - MP3)

December 19, 2022

Many of you have been asking how I’m doing (Kirsten). In addition to the loss of use of my limbs, my breathing is weaker and shallower, which means ALS is in its final stage. My speech is now incoherent, but my eyes still work, so I’m still able to communicate with the written word using the iGaze, for which I’m thankful. I’m at my proper weight now due to high calorie smoothies my husband and the PSW’s feed me via the G-Tube directly into my stomach. The best thing about a G-Tube is that it doesn’t matter how it tastes, which David says is a real marriage saver. I have to agree with him. 😊

ALS is like jumping out of an airplane. We trust the rip cord will open but don’t know where we will land. We’re still praying for a miracle, especially through the intercession of Fr. Bob Bedard. We thank the dozens who have been praying for us. We believe these prayers for healing are being stored up in a bowl in heaven to be released in His timing. (Rev 5:8)

Adessa, our 6-year-old, still seems well balanced and so far is not manifesting any significant negative side effects from our situation. Like all kids, she is master at living in the moment. David says he'd like to be more like that. Don't we all? She crawls up onto my wheelchair and reads to me. 

We’ve been getting about 18 hours a week of PSW/nursing support and have hired a friend from Church to help. David says we have 24 of the 168 hours in a week covered. It’s a marathon for all of us. A sense of humour really helps, including the classic ALS “happy hour” where I will have sustained laughter which is the only good thing about ALS.

For the last year David has put his company on "pilot light" mode of about 3 hours a week and is declining new work so he can stay focused on us. Thankfully, God has taken care of us financially through this process, which is a blessing.

Over the last year, we have been blessed with an abundance of visits and help from friends and family. December has been sprinkled with visits from my sisters. My mom will be with us for 2 weeks over Christmas and New Year’s. My family is such a blessing, always there for me, no matter how inconvenient it is for them. Mom, Laverne, Rachael and Regina - I love each of you so much!

2022 has been a school of prayer like none other. I feel as if I’ve been praying like my life depended on it. Over the years, my daily prayer time has averaged 2-3 hours a day. It is a type of contemplative prayer in which I follow the Holy Spirit's leading. I'm just along for the ride. This year, the hours in prayer have climbed significantly to the point where I'm now praying 8 - 9 hours on the days when I'm able to finish. I'm rarely able to finish the prayer time as healthcare workers are coming and going. It was frustrating to me when it first happened but I've recently been asking Our Lady to finish the intercession for me. The Lord rarely shows me what I'm praying for, but I think He is really up to something! I don't include this to toot my own horn, I'm nobody special. I mention it to show that even though I'm in a wheelchair all day, my days are not boring. Llike many of you, I find there are just not enough hours in a day.

The Eucharist has been my source of strength, my own personal portal to Heaven. It’s like a flame in my soul banishing the clouds of doubt, discouragement, unbelief and fear; nourishing and nurturing me with faith, perseverance, and trust. I don’t want to guess what kind of a state I’d be in without the Eucharist. Recently, during one of my sleepless nights, I felt inspired to come up with a little poem which I share with you below. 

From our family to yours, we pray that this Christmas, Jesus will be born in your hearts and that you will know that whatever may become of our world, or our families, or even our health, Jesus is always there to sustain us and guide us. Even the most dire circumstances help us become the saints that He's called us to be. We trust you will have a blessed Christ-Mass season.

With our love,

Kirsten, David and Adessa

The Greatest Gift 

Jesus lying in a manger 
Kissed by Heaven's light
Is how the shepherds found him 
On that blessed night

It happened in Bethlehem
Which means "house of bread"
The star of wonder brightly shone 
A halo 'round His head

'Twas a common feeding trough
Simply filled with hay 
The French verb “to eat"
Is written "manger" (monge-ay)

'Twas no accident they found Him there 
Foreshadowing John chapter six
Jesus said to everyone 
"Whoever eats My flesh ..."

At the Last Supper 
These words became reality
When He told His disciples 
"Take and eat, this is My Body"

In the Church through the ages 
Faithful to His command
A holy priest speaks these words
Then holds Heaven in his hands

'Tis not just bread and water
Nor a "symbol" as some say
But truly His Body and His Blood
Soul and Divinity 

The gentle Babe in the manger    
Truly was a Gift
Heralding that day He became 
Jesus in the Eucharist

September 24, 2022

Hello friends, 

It's been nearly a year since my email about my life with ALS. Many of you have asked how I'm doing, and I'm sorry I haven't been able to respond. 

Here's an update since my email from last October (see that email at the bottom):

In November of last year I could no longer go safely outside, so thus began my transition to full-time indoor living, with outside being limited to our deck. In February of this year I required a walker to get around indoors. By May I needed a power wheelchair. In July I lost the ability to feed myself as a plastic spoon became too heavy and so by August I was totally dependent on David for everything. This past week was another milestone as my left hand could no longer operate my wheelchair joystick, so I have moved to a head array.  I navigate the chair by using my head to tap either the left, right or back pad and in another setting use the same pads to change the seat positions.

I use a breathing machine at night called a bipap. This helps my lungs to do their job, including expelling carbon dioxide. I find I'm more alert during the day and don't cough as much when I use the machine at night. 

To type this email I'm using a device called an iGaze. My eyes take the place of a mouse to navigate an on-screen keyboard and word prediction. When I completely lose my voice I will use the same device to select and speak out phrases for me. 

I'm so very thankful that at present, there is no pain associated with my condition other than some discomfort with contracting muscles. I'm somewhat comfortable during the day in my wheelchair.

There are two major milestones yet ahead, losing the ability to speak at all (I currently reserve my limited speech for family) and losing the ability to swallow. On October 5, I will have a gastro tube inserted into my stomach to prepare for that eventuality.

The healthcare system was dire before the pandemic, but due to the mandates, over 4000 Ontario healthcare workers were forced out of their jobs. So we were on a waiting list for five months for PSW support. David has been doing the PSW support and even some nursing functions, as well as tending to Adessa, feeding us three meals a day and cleaning up, as well as finishing up with his business clients, dealing with taxes, etc. Even with all the help from our dear friends who visited us, there was tremendous strain on David, on our relationship and on our family. I can be demanding and impatient, so this combined with David's near burnout and its accompanying short fuse, we had our moments.

Our Occupational Therapist called one day and asked if we would like to be interviewed by a CBC national show. Unexpectedly, a couple of days before it aired we were offered 8 hrs a week of PSW help which to us felt like winning the lottery. This has relieved a lot of our stress and as more help increases from healthcare, we are not feeling as desperate. There has been a tremendous outpouring of encouragement as a result of the show.

I'm no longer able to homeschool so David will be adding that to his colorful and ever-growing CV. Adessa is 6 years old and she is showing no significant signs of stress or trauma in our family situation for which we are grateful. She seems well adjusted and joyful. She is excelling in reading,  her favourite book series the Chronicles of Narnia by C.S. Lewis. She also speaks and reads French. She is learning piano and is in ballet class. Please pray for her in our situation.

I trust Jesus completely. I know He is in control of this situation. Last August, 2021, I woke up with a complete thought: “you gotta trust Me in this”. This past March 2022, I woke to another complete thought, “won't it been encouraging to others when you’re healed”.

I don't know how bad my condition will get, but I'm at peace for whatever may come. David and I have both experienced a stripping in different ways, but we find ourselves leaning on our Beloved Jesus. (S. of Songs 8:5)

I thank God for my Catholic faith, which gives tremendous meaning to the suffering that our family is experiencing. I never really understood Redemptive Suffering until this experience. It is an invitation to intimacy with Jesus. He used suffering to bring redemption to humanity. By uniting my suffering with His (Col. 1:24), I participate in a mystical way in the redemption of souls, serving His body the Church. I love St Teresa of Calcutta's revelation that Jesus' words on the cross "I thirst" was His thirst for souls. Having been inspired by many of you, I'm doing my best to pray for those in purgatory and the conversion of sinners.

We believe His thirst for souls is particularly urgent now when the "Great Reset" is imminent. We believe the curtain is about to lift on the world stage set for the Great Deception. It will be a socio-political-economic structure which will offer "solutions" to the difficult times to come, but will really only result in bondage.  Its accompanying pseudo-religion will offer love, tolerance, inclusivity and peace with the trappings of our Catholic faith, except it will exclude Jesus' simple message, which is the heartbeat of our faith:

Repent and be saved. (Mk 1:15)  I am The Way, the Life and the Truth, no one comes to the Father except through me. (Jn 14:6)

We truly live in exciting times! If you're reading this email, you were born for such a time as this! :)

A dear friend asked what graces, if any, I was experiencing during this time of difficulty. I'm ashamed to admit that my response was quite negative (perhaps I skipped breakfast - low blood sugar!). In truth, the graces are consistent and daily: my husband's good morning kiss, my daughter's scrambling up into my bed (which has been moved to the main floor). My desire to get out of my bed and into my wheelchair each morning.  The almost daily reception of communion which David brings me. The steady stream of concerned guests who travel for hours and from across the country to see me. The hilarious one-liners that come out of David's mouth after a long day as he uses the Hoyer lift to transfer me from my wheelchair. The people in our parish who give so much to Adessa. The beauty that surrounds us here in the Muskoka's. The numerous times that my husband endearingly refers to "happy hour" when my ALS condition launches me into uncontrollable fits of laughter which is joined into by our daughter. The peace and joy I experience most days and the unexpected gifts God sends, such as the other day when I glanced out my window just in time to see a big black squirrel high-tailing it out of a tree with a small red chipmunk on his heels. I nearly fell out of my chair, I was laughing so hard.

God is so good to us.

Recently a friend suggested we request Fr. Bob Bedard's intercession for my healing, which would also help move his cause forward. We began this in early September and we invite you to do the same if you wish.

I hope this letter has given you a good indication of where things are at and how we're doing. We love you and pray you remain strong.

With all my love,

Kirsten 

(David and Adessa also send their love)

Oct 23, 2021

Hi friends,

I hope this note finds you well….

We wanted to send out a note to update you on things around here.

Firstly, we are settling in well, it’s been over a year here in Huntsville. We love the area and give thanks to God for His goodness. We are able to attend Mass 6 days a week which is a huge blessing to us. We participate in a little charismatic prayer group so we’re enjoying that as well.

As some of you know, I’ve been experiencing some mobility issues which began this spring. It began as limping and tripping on my right foot, then weakness in my right leg, followed by similar symptoms in the left leg. I began physio in July which has helped with balance issues, but we see a definite progression happening. We had 3 MRI’s (brain, neck and thoracic spine) which ruled out MS or tumors. After EMG tests, my neurologist suspects ALS and has referred me to Sunnybrook Hospital in Toronto.

But Jesus says….. “you gotta trust Me in this”. This is what I heard interiorly in a dream at the end of August. I woke up wondering, “was that the Lord?!”  I responded, “Yes Jesus, I trust you”. So inwardly I have a steadfast, constant peace, knowing that He’s allowing this - up to a point - just as I had an aggressive form of cancer in my body that didn’t spread (the year before we conceived Adessa). More than ever - I’m totally in His hands. He’s a good God… all the time. So we move forward one day at a time.

I’m now having to walk with an aid whenever I venture out of the house, and having an accessible parking pass makes it easier, but we’re so thankful for online shopping and curbside pickup! At the same time, God has been speaking to David (in a dream) about relaxing work hours, and so he’s prepared to assist wherever needed.

So I feel very strongly that this is for a season, that there’s a reason yet to be unveiled, There’s something on the other side of this. I’ll be able to look back and say, “Ahhhhh… so that’s what the battle was all about!”  I give thanks and praise everyday for what is "coming down the pipe”.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: 
for thou art with me; thy rod and thy staff they comfort me. 
Thou preparest a table before me in the presence of mine enemies: 
thou anointest my head with oil; my cup runneth over. 
Surely goodness and mercy shall follow me all the days of my life: 
and I will dwell in the house of the Lord for ever.

Be blessed my friends… and I’d love an update on you as you’re able to send…

Kirsten (and David and Adessa)

August 10, 2020

Dear friends,

We wanted to update you on an important change in our lives… we recently bought a house in Muskoka....

About a year and a half ago, I had a dream where I was doing a real estate transaction, and I heard the word “Muskoka”. This dream was similar to the dreams I had which directed me to move to Ottawa from B.C., and a dream about the Eucharist which resulted in my subsequent faith leap into the Catholic Church.... the dream was short, to the point, and not much wiggle room for "interpretation".

There is a Muskoka Avenue in Ottawa, but the houses were massive and beyond our price range, and not much goes up for sale anyway.

It didn’t make sense that we would buy a cottage in Muskoka that was 4 hours from Ottawa.

So we shelved the dream as it didn’t make sense back then.

Then this July I was feeling that we needed to revisit the Muskoka thing again. Nothing for sale on Muskoka Avenue in Ottawa, so we bought some maps of the Muskoka region and I began praying over the maps. There was a lot of focus on a town called Huntsville and in particular, an area just north of town.

There were 3 houses for sale in that area, so after more time, prayer and discernment, David suggested we just head up there and scope it out, and, after looking at about 6-7 houses all around the Huntsville area, we put an offer on the house in the area we were looking at.

Possession date is August 20 so we’ll be moving in Aug. 24th. At this point, the Lord hasn't shown us what He has in store for us there.... we don't know a soul, we're just trusting He'll lead us... through this whole process, we did a proper pros/cons list and a modified Ignatian discernment, and we feel this is God's will.

Although it's a beautiful region in which to live, our biggest cross is leaving our wonderful faith community with St. Mary's. We will be attending a St. Mary's in Huntsville (St. Mary of the Assumption), so Mary is with us along the way!

However, we - and you - are only a Zoom or Facetime call away, so don't hesitate to touch base..... and know that there's plenty of room if you’d like to visit!

Lots of love,
Kirsten & David (& Adessa)

=====

If you want to contact us for any reason, feel free to email us.