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Remember Kourtney . . . One Year Later

Gathering my thoughts about Kourtney’s last days on Earth has been a lengthy and emotional process. Processing the loss of not only my daughter but also the person who transformed my faith and my very core is an ongoing challenge.

I always knew Kourtney’s life would be brief. From the very beginning, we embraced her existence and pledged gratitude for each day she graced us with her presence. My determination was unwavering - to live life fully despite the pain.

Kourtney, too, adopted this determination as her own. Her body bore the ravages of EB, yet her spirit remained unbreakable. I was aware of the myriad issues plaguing her - recurring skin cancer, a leaking G-tube, weight loss, severe corneal scarring, and the loss of her ability to walk with assistance.

Approximately a year before her passing, an overwhelming sense of impending doom gripped me. Friends came to pray with me, as this feeling refused to dissipate. I later confided in Kourtney, and she responded with laughter, assuring me that she’d be there to care for me in my senior years.

Despite her reassurance, that persistent sense of foreboding clung to me. I suppressed these emotions in unhealthy ways, both to myself and others.

During this time, my own life took a turn with a stress fracture and ensuing back pain. My physical agony mirrored the emotional turmoil of that impending doom. The divergence in family opinions during the COVID era added to the strain.

In January 2022, Todd’s father passed away, and we had to bid farewell to our beloved dog Lexi of 12 years. Drawing from my 30 years in healthcare, I knew that death often arrives in threes. I trembled at the thought. In our garden last year, black butterflies surrounded me, yet Kourtney remained resolute, her spirit unwavering. My mind perpetually swayed in a state of panic.

Further challenges unfolded in June 2022 when I was rear-ended, causing me to be off work. Remarkably, we now recognize divine intervention in these events. They afforded the four of us an opportunity to be together in Colorado, where we captured our last family photo, amidst joyous moments with the EB community .
In August the lingering sense of impending doom persisted. A dear friend, Tammy, made the journey from Calgary in simply to see Kourtney. My parents were out visiting and my sweet mother bid her final goodbye to Kourtney, saying, “I know I already said goodbye, but I need to do it again.”

On August 25th, KOURTNEY experienced sheer joy in Seattle, dancing late into the night with Shae and her caregivers Rachel and Sarah. However, her physical condition deteriorated thereafter.

Her body seemed to signal, “I’m done.” A bladder infection and hip pain emerged, accompanied by excruciating pain during any movement, and blood clots oozed through her dressings.

Nonetheless, Shae and Kourt remained determined to attend the Aritzia sale in Vancouver on September 3-4. I had reservations, but I didn’t deter them. Yet, on the eve of their departure, Kourtney conceded due to unbearable pain.

On September 6th, Sarah and I administered her last dressing change at home. Kourtney couldn’t sit or stand, and her screams while urinating haunt my memory. I fervently implored God for mercy on her fragile body and for wisdom. We summoned an ambulance to transport her to our local hospital, but little could be done, as blood couldn’t be drawn, and IV access proved impossible. Pain management via oral medication was our sole recourse.

A PICC line procedure at RCH was scheduled for Kourtney on September 8th, yet her body couldn’t endure the wait. Her condition deteriorated rapidly due to hip pain, dysuria, and uncontrollable bowel movements, leading to sepsis. She required bloodwork, IV fluids, and antibiotics.

Looking back, I discern divine intervention in the swiftness of hospital procedures, which typically proceed at a snail’s pace. Kourtney’s critical condition prompted the medical team to expedite the PICC line placement at Abbotsford Hospital. I’m still slightly amused by how a nurse in the IR department took charge and, for the first time in 25 years, didn’t allow us to assist with the procedure. I’ve since conveyed my gratitude for her extraordinary efforts. The PICC line gave us 18 more days with her .

The PICC line was successfully inserted, accompanied by essential bloodwork, fluids, and antibiotics. We held onto hope she would start feeling better .

While there were days she seemed to rally, the bladder infection cleared up , she couldn’t sit up or move in bed without agonizing pain. After five days of hospitalization, it became evident that she wouldn’t be coming home. Nevertheless, Kourtney’s unwavering zest for life persisted, and we maintained our hopeful stance.

The medical team honored Kourtney’s fervent desire to live, even as her deteriorating bloodwork revealed the worsening of her condition.

I now understand that her EB-ravaged bowels were no longer absorbing the necessary nutrients to keep her alive. She received 15 units of blood but it just ran through her , akin to pouring water into a bucket full of holes.

On the last night before she slipped into a coma, she received a blood transfusion. In the middle of the night, she required assistance for a bowel movement, which took three of us to manage. The sight of dark stool confirmed that the blood had once again flowed through her. In that moment, I realized the end was near.

That morning, a dressing change was imperative. Her friend and caregiver Priscilla visited as I prepared her dressings. Priscilla was going to visit Kourtney on the weekend

We decided to perform the dressing change with heavy sedation, understanding the small chance that Kourtney might slip into a coma due to profound relaxation. Todd, Shae, a caregiver, and two nurses were present. Before we began, I asked Kourtney about her greatest fear, and she expressed her dread of pain. I assured her that the midazolam would ensure she wouldn’t feel it.

The details of that dressing change are too distressing to recount. Nonetheless, we kept our promise to her that she wouldn’t suffer. Unfortunately, the “small chance” materialized as she slipped into a coma. Everyone present knew that this was the best course of action for her. To this day, I’m profoundly grateful that Todd and Shae were there, and despite the anguish, a sense of relief enveloped us.

Kourtney never regained consciousness. She spoke a few times, inquiring about my whereabouts, which shattered my heart, but she remained incoherent. Three days later, she departed to be with Jesus.

While relief washed over us knowing she was free from pain, the sting of death gripped our hearts. Comprehending her absence remains an ongoing challenge. I liken grief to a backpack, a weight we carry with us. At times, it feels unbearably heavy, making even rising from bed a monumental task. Other times, it eases, but it’s a constant companion.

I cherish the precious moments we spent with her in her final days. The hospital staff displayed incredible compassion, working together while honoring Kourtney’s fervent wish to live. There are no regrets, . There was nothing more anyone could have done.

Rather than succumbing to anger at her untimely departure at the age of 25, I choose gratitude. Grateful for the 25 years we shared. Proud that I had the privilege of being her mother and attending to her all encompassing needs. . She was a fragile gift. There is not an hour that goes by in a day that I don’t think about it or laugh about something she said or did. Her spirit lives on and I still feel close to her. She was here for a short time but changed so many peoples lives for eternity.

Norman Cousins once said, “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.” Kourtney’s indomitable spirit remains a testament to living life to its fullest despite adversity.