Update on Kirsten's ALS (Lou Gehrig's disease)
May 2, 2023
Download Adessa singing "Jewelled Sword" about Mommy.
Short radio version
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.
Kirsten, David and Adessa
A Jeweled Sword
I climb up on your wheelchair
Kiss your cheek and brush your hair
Mommy it is 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
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
You're a miracle, I'm a 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
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
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,
(David and Adessa also send their love)
Oct 23, 2021
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”.This fairly aptly describes where things are at (and where I find myself once again):
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
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.