“This is ALS,”…
These were NOT the words we ever expected to hear.
“This is ALS,” was the LAST thing in the world we would have picked had the choice been ours to make.
What do you do when someone standing in a white coat tells you the highly anticipated end to your journey is in fact just the beginning and you will definitely experience death along the way?
What do you say when they tell you there are no treatments and no cures? That two-five years is the life expectancy and preparations should be made, documents should be signed and wishes should be lined out?
How do you act when you lock eyes with your mate in a moment of shock and disbelief and see tears fill the bottoms of his eyelids? When you see the film strip of graduations, T-ball games and weddings they say he will likely never be a part of flash before his eyes?
“This is ALS,” was not part of our first phone conversation. It wasn’t scripted into our vows as we stood before God and everyone pledging to love one another in sickness and in health. It wasn’t part of the conversation as we walked hand-in-hand down a Jamaican beach mapping out the rest of our lives together as husband and wife.
“This is ALS,” was the farthest thing from mind as God began entrusting us with our own little people. Like, who starts a family thinking there might be some mutated-genetic-gene lurking in the corners of your DNA just waiting to rear its ugly, thieving-head?
In short, “This is ALS,” was NEVER part of the plan…
Not our plan anyway.
The Mess…
The story begins in November of 2014 when Chad began experiencing difficulty swallowing. Then, in February of 2015, his speech began to slur. In August of 2015, a scan revealed two “surgically fixable” neurological issues and in October of 2015 brain surgery was attempted.
Six weeks into recovery, when symptoms should have been retreating, Chad continued to regress.
It’s tempting to skip this “recovery period”.
One, because the details are endless and two, because these were some of my hardest days.
The striving for answers seemed endless. Fear of the unknown was torment. During this period we endured job loss, health insurance loss and a continued progression of symptoms that were supposed to be getting better. There were endless 12 hour-round-trips to Chad’s treatment facility in Cleveland, Ohio and endless medical bills stacking up on my counters.
Endless was a great adjective during these days…
And did I mention we had a baby in the middle of all this?
So yeah. I found out I was pregnant with our third bundle in October of 2014, one month before the disease-onset began. Turns out, his ETA was perfect and could have only been orchestrated by our creator but still… (sigh) My big, swollen, pregnant self gave birth to a son in the privacy of our own home in July of 2015. Other than what is commonly referred to as “bulbar symptoms” in the neurological community, Chad was still physically strong during the birth and functioned as my “oak tree”.
The birth was beautiful and one of the most sacred experiences either of us have ever been apart of but the subsequent months that lay ahead where some of the most grueling.
From this point forward, we proceeded to endure three months of true-infant-colic. There were non-stop sleepless nights and grueling pumping sessions-since traveling together with a newborn baby and a sick husband was not an option.
Only grace friends. Only God!
At times, the low’s we experienced mentally and physically were more than humanly possible to bear.
Bear…
“How much more can we POSSIBLY bear God?”
Then in February of 2016, after more imaging and extensive muscle and nerve tests had been conducted, the masked culprit was unveiled.
“This is without question ALS,” they said.
Amyotrophic Lateral Sclerosis.
A death-sentence by all medical standards.
Enter swift kick in the gut.
Our hearts literally sank into our chests.
I’ve always heard people use this phrase to describe their feelings. Now I know…
This was the diagnosis we had secretly feared but tried not to speak of. Maybe we didn’t want to see it. Maybe we didn’t want to give it the room or attention we felt it didn’t deserve or MAYBE because only five years of marriage, three minor children and a life in full-swing doesn’t really allow for words like these.
The Beautiful…
Fast-forwarding six months later I wish I could tell you Chad is physically doing better…but he’s not. The reality is that we are dealing with a progressive disease and thus, Chad is progressing. I wish I could tickle your ears with a story telling you how he is physically defying all the odds…but I cannot. What I can tell you is though Chad’s physical body is failing, God is still prevailing.
You see, Chad’s story hasn’t been altered. The plans have never changed. The same God who knit Chad together in his mother’s womb. Who called him fearfully and wonderfully made and said all his days were ordained before even one of them came to be (Psalm 139:13-16), that same God is using the ugly places of this life to complete this fearfully and wonderfully made process. The same God who said He would work ALL things together for our good is doing just that! (Romans 8:28)
How does the phrase “fearfully and wonderfully made” go in the same sentence as ALS?
How does the word “good” fit in the same context as the word “terminal”?
How does a story about grace that brings life fit in the same paragraph as a diagnosis that means death?
The EVEN MORE Beautiful…
I’ll tell you how it fits. While we in fleshly form equate “This is ALS” with the end, God who is sovereign over ALL things said, “I know this is ALS but THIS IS A NEW BEGINNING.”
It is NEW life by way of death. It is NEW birth by way of pain.
Pain is like that. Feared. Hated. Avoided at all cost. Why is there pain? Why is there suffering, sickness, disease and death? I’m not here to debate your theological understanding or beliefs on why pain and suffering exists. I’m only here to tell you that this pain has a purpose and whether or not you believe God sent it, He IS without a doubt using it to change hearts and lives – yours and mine included.
This is a season of extreme bending and stretching. Bending our will to His and stretching our understanding of who He is and what He can do. It is transitional and transcendental. And yes friends, it is painful.
But though we are being bent, He already said He wouldn’t break us (Matt 12:20). So I know this bending is not done with the intention to punish or harm. We’re being fashioned…like clay. Bent and molded into vessels whose edges have been smoothed and whose inward parts have been meticulously contoured. Vessels designed ONLY to be emptied and filled again.
Emptied of self and filled with Him.
All of Him.
You see, the world see’s a man physically wasting away. A wife loosing her husband and small children loosing their father. But I see a work-of-art occurring. I see the master potter at work molding His clay. He’s patiently seated at the wheel -molding, shaping and refining us into vessels worthy of honorable use.
Though Chad spends most of his time a prisoner in his own body, continually loosing the ability to enjoy the material, tangible pleasures of this world, He is experiencing something invaluable that many of us never will. He is TRULY learning what James say’s in James 1:3 “Count it ALL joy my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing,”.
God is securing a steadfastness in Chad’s heart that no man, disease or calamity can take from him! Through the weakening of Chad’s physical body, God is at work strengthening and building up His body! The body of Christ! Through our weakness, He really is made strong and it is because of this that we can count it a joy! Chad’s testimony will be one that will be shared and remembered for years to come, ultimately pointing people straight to Jesus. Glory be to God! None of this is in vain!
Friends, this is a NEW beginning – not an end. NEW Life – not death. Transformation – not degeneration.
On the surface this is ugly. It’s messy. A million questions dance through my head as tears stream down my cheeks. I am grieving. We are all grieving. BUT GOD, in the midst, is giving us NEW eyes, His eyes, to see past the mess and into the beautiful.
Through the sickness, surgery and failed physical recovery, He’s teaching us how frail the human condition really is and just how feeble we ALL really are.
Through the stripping of our perceived “control”, He’s teaching us that He REALLY IS in absolute control.
OF. EVERYTHING.
Through the loss of our individual bodily abilities, He is teaching us true gratitude for His body. The body of Christ. The ones called to be His hands, His feet. The ones who HAVE BEEN His hands and feet toward our family and have pulled our sinking heads above water when the drowning ensued.
Through the waiting and wringing of hands, He is teaching our pale, wrought and wrung out hands to fold in prayer.
We don’t have it all figured out and we don’t know how this story will end. But we do know we are chosen. That we are closely being watched, cared for, and loved-on by our daddy-God who sometimes uses despairing depths to illuminate beautiful heights and who weaves together quilts of splendor from the worn-out, tired and frayed patch-work-pieces of lives that have been cut-up, ripped up and torn.
We think we know torn…
Nobody knows torn like He does…
Because He’s a torn-kind-of-God.
His back was torn on a cross so that ours could bear the weight…bear the weight of this sometimes burdensome path down which we’ve been led.
Friends, we can bear because He first bore. And we can bend because He first broke. And when it feels like we’ve been stretched out to far across the board, He reminds us that He was stretched out across two. That His hands were punctured right through so that when we’re sifted through them, that which is pure may escape through holy-holes designed to purge us of that which is not. Holes designed to rid us of the ugly so that the beautiful may be revealed.
So now we wait and we take it one God-given-gift day at a time.
And we cast our gaze high early on, when the birds offer up their first songs of praise.
Because they know it’s coming. We know it’s coming.
The light.
It’s about to come right up, shattering the dark, revealing the beautiful lay of a land abundant…
– the messy beautiful.
Joyfully,
The Judes
The Messy Beautiful 
Lori, What a beautiful, hard read… How is it possible to grieve and rejoice for your family at the same time? Only God… I am so grateful you and Chad know Him. I am blessed by what you wrote. No doubt, this will be used to bless many others, too. . #writeonJesusgirl
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My prayers are with this amazing family that GOD wraps HIS hands around them as I have already read through this story. GOD has a plan for us all and HIS plan never fails. Will continue to pray for peace and comfort for the Jude family.
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Thank you for sharing this beautiful, sad, inspirational story! I don’t know how physically mentally emotionally that you and Chad overcome each day except through our Lord and Savior..I love you and the family and know that I will life you up daily through prayers…
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Thanks for sharing your story, I just lost my wife after 48 years and she traveled a road of pain and suffering for 13 years before God took her home. She never complained about her illness but accepted and was the most amazing lady that I know.
Our children are grown and they watched this lady accept her life with a smile, always happy and giving her love to each of them without hesitation. She had a love of life and she often said she would one day be free of this pain and suffering and when the end came and I was holding her hand it was just like her going to sleep at night. Just one little puff and she was gone and now she is at rest.
It is difficult for me to write about Ruth as I didn’t want to let her go but, I am thankful that God gave me this wonderful lady to share my life with. She was perfect in all that she did, always trying to assist others until three days before her passing.
Thanks again for sharing as I am very fortunate to have had such a lovely lady to share my life with.
You know my daughter, Angie Sparks and she had told me your story before I read this.
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All the feels momma. All the feels.
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Lori and Chad, we continue to lift you and your precious family up in prayer. Abba Father has you all in His hands and in our hearts. We love you!! His peace surpasses all understanding. His comfort is strong tower of refuge. The Joy of the Lord is our strength. May He continue to provide peace, comfort, joy, strength and love on your journey. 💕💕 💝
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I am incredibly blown away from your words. You said it in such an amazing way, that I was truly able to understand, and that is something that only someone who truly knows the Lord, could speak. Some never really understand how blessed they are to have such a wonder Father. Those who do not know him would call this a tragedy, yet your family by going through the battle of ALS, and believing in his words, can call it a blessing!! By reading your journey it is seen that: Life =Death but with GOD, Death = Life, how beautiful. Thank you for your inspiring words. Your family will continue to be in my prayers.
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Your story resonates with so much truth. Our church family just endured this same situation that you and your husband are going through. A dear brother in Christ, who was just 46, found out he had ALS. He just died July 31. Through it all he was a shining example of a man of God, and I believe God was pleased with Scott’s surrender to the illness that he knew would eventually take him home. His life touched so many lives and no one truly knows how many. I believe one day he and your husband will hear so many people say, “Because of the way you handled the the situation God put you in. I became a Christian.” Thank you for your testimony.
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Amen! So glad I read this! It’s good to be reminded of God’s faithfulness to His promises in and by our worst days.
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There are no words. Thank you for sharing God’s hope in the midst of your journey. May He bless you beyond understanding.
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Beautiful indeed!! I am in awe of your spirit of Christ. The love of Christ, husband, family. You have captured our hearts. Continued prayers for Chad and you all. Love you!!
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With tears running down my face, I could not feel more proud and blessed, as I have just read Lori’s post. My daughter Lori has amazed me with how she expresses her thoughts and feelings as a writer. She has chosen to take a God-given gift and has developed it to praise him thru the trials of life! A mother always wonders what kind of person her little child will become as an adult and I am amazed at what our Father has done with her life1 I never imagined that God would use Lori and Chad in this heart-wrenching, but inspiring way. My little girl has grown into a woman that I cannot describe more accurately than as a humble servant of God. My precious son-in-law Chad is such a blessing to others and his children! I wish so many others could experience the love he has for his babies and wife. There are times I still cannot believe this is happening to my loved ones, but Our Heavenly Father has sent earthly angels to minister to them in a recurring fashion over and over and in such a way that it is beyond human words. Thank you to everyone who has taken the time to encourage them, to send gifts of all manner and for the continual prayers we are wrapped in!
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Your story and your insights have blessed my heart today. Thank you for sharing your families journey.
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Lori, I was deeper inspired by your blog. I was married to Chads uncle Pete when we were given the same news you got. I know the ruff road that lis in front of you guys. You are in my prayers. Gods blessings.
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What a beautiful story. It’s easy at times like this to question God. But you have remained so strong in your faith. We will continue to pray – though I’m so sorry for everything that is going on.
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Beautifully written may God continue to strengthen you I knew Chad growing up and I hate that he and yourban family must endure this God bless you for finding strength and beauty through our savior. Many prayers to you all
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Thank you for sharing your heart Lori, your strength, your pain, and your love. Chad is blessed indeed to have you and your faith in his life, for as long as he is with us. Prayers to you all.
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Chad,
You and your family are in my prayers.
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I went to school with Chad and worked with him after graduation at a local gas station. Chad has always had such an infectious personality. He touched everyone he met. I’m so thankful that he has such a wonderful and beautiful soul to love him when he needs it most. His wife and he are blessed to have each other and such a strong faith in God. Love and prayers to this beautiful family.
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Lori, asking God to give you both an extra measure of His grace today as you battle on. You are a warrior, my friend. I am blessed that our paths have crossed. I see Jesus in you, and it’s beautiful.
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This is such an inspirational message. Thank you for sharing and thank God that He has give you this talent to write. I have never been good at putting words to paper, but you, Chad and the children have my prayers. This disease has affected our family so many times. Chad is my husband’s cousin. Pete Jr, several other cousins, his brother and his mother Lassie have all been taken by ALS. I pray for a cure and that it will cease in this family. Much love to you all! God bless!
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So Missy and I were at church yesterday and the pastor said something very profound that applies to you and Chad’s situation. He said you can either worry or worship , you can’t do both. Your story of hope love and the glory of God shows how much you worship and how strong your faith is! It is truly an inspiration! Chad’s strength through this will reach untold people the extent he may never know. I started out feeling sad and lost by what you guys were going through. I couldn’t imagine the pain, questions and anger at first. To read how you have come full circle is a true inspiration and helps further strength my own relationship with God. Love you guys, please don’t hesitate to reach out to us if you need anything!
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Dear Lori & Chad,
Thank you for sharing. My family & I are on this same journey. After struggling with mobility issues for almost 2 years, along with some falls, I received an ALS diagnosis this past summer. I came home stunned, shocked and in disbelief. The doctor said don’t go home and read about this. So I read a clinical article about the medication he prescribed. I decided to start a new journal; I journal prayers, scripture study, and thoughts. Here is my first entry:
“On May 17, 2017, I received a diagnosis for the difficulties that have continued to get worse since late summer 2015. That diagnosis is PMA – Progressive Miscular Atrophy. It is grouped with ALS. There is no known cure, however, I have been prescribed 2 medications: Baclofen which helps with muscle spasms, twitching & tinkling; and Riluzole which is supposed to slow down the breakdown of muscle tissue. As I write this evening, I am coping with the possible direction this could take my.life. I have moments of despair but they pass as I consider the day (a gift) at hand……..
What will my tomorrow be like? Whatever lies ahead is nothing that hasn’t first passed through God first. I pray that He will count me worthy to join in the sufferings of Christ. I pray that He will allow me to continue singing His praises. I KNOW HE IS GOOD!” 2 Corinthians 4:17-18
I had to find a new acronym for ALS: Always Look to the Savior.
Thank you so much for sharing. I know I am not alone.
Your fellow Sojourner
Barbara Johnson
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