If there ever was a birth story that should be shared it’s Kourtney’s. It’s been 23 years and I remember every detail like it was yesterday. We called her our butterfly from day one, as her skin is a fragile as a butterfly wing. There is also a rare phenomenon called the butterfly effect which I believe sums up her 23 years. The butterfly effect is the “phenomenon whereby a minute localized change in a complex system can have large effects elsewhere - even the flutter of butterfly wings.”
If anyone’s life on earth has had a large effect it would be Kourtney’s. To know her is to love her.
As a child I was obsessed with babies. I was the third child of six and have clear memories of looking after my two youngest siblings. In fact looking back I remember being so sad that my mom was not going to have anymore babies that it triggered my first bout of depression.
One memory sticks out the most for me though happened one morning at our daily family breakfast. No matter how many times we rolled our eyes and complained, daily devotions were a priority in our family. This one particular morning my dad asked us to go to our rooms and bring back something we wanted to give to Jesus. We had to place it in the middle of the table using a Lazy Susan as a makeshift alter. My dad placed his wallet, my sister put her curling iron, my brother his ghetto blaster, and I remember clearly bringing in one of my dolls (picture the story of Abraham and Isaac. Read Genesis 22 if you don’t know it).
Todd and I were the ripe old ages of 26 when we got married. I was established in my career as a nurse aTodd was finishing up his PDP to be a teacher. We never really talked a lot about when we would have children. All we knew was I wanted at least 4 and more. We didn’t expect to get pregnant 5 months into our marriage.
Todd graduated from his program in December and after his first day on the job he announced he was going to buy a mountain bike. I told him we should think about buying a house because I was pregnant. In true Todd fashion he was not excited nor was he disappointed . He just asked if he would still would get his bike.
We bought a house, Todd got his bike and we prepared ourselves for the birth of our baby. I had a relatively easy pregnancy and I worked past my due date.
September 20, 1997 my water broke at 4:20 am. I woke my mom up in Saskatchewan and told her I couldn’t get off the toilet because I was peeing. (I was not a maternity nurse at the time). She told me to get to the hospital. I grabbed a baby diaper and got dressed for the hospital.
I had a few contractions that I breathed through on the way to the old MSA hospital. I remember being upset with Todd for coming to a complete stop at a 4 way stop! It was 4:30 on a Saturday morning after all. On arrival to the hospital the ER nurses laughed when I arrived my pants completely soaked. No need for assessment and they brought a wheelchair and whisked me up to maternity.
I was gbs positive but before they started the IV I had to go to the bathroom. I said to Todd I felt like I had to have a huge dump and the nurse overheard me. She ordered me back into bed; I was 8 cm dilated. After a few puffs of Etonox I was fully dilated. The real work began. Pushing.
I pushed for 2 hours. It was a workout for sure. But it wasn’t pleasant for anyone due to the fact that I took castor oil the night before. As Kourtney was starting to crown and Dr. Driedger was getting gowned for delivery I remember giving one big push. Kourtney was born on the bed; no one there to catch her or to protect my perineum. I believe that was the first instinctual way that I protected my fragile skinned baby girl .
As she was placed in my arms all I saw was her “grandpa Harold chin” but the doctors and nurses were immediately concerned. The skin on her right foot was completely sheared off. It was though she was wearing a red slipper. There was loose skin hanging from her hand and a blistered area on her nose. They took her to the NICU right away and Todd went with her as I got stitched up with a very complex 3rd degree tear.
Thankfully the pediatrican on call that day had been at Children’s Hospital and diagnosed her right away with Epidermolysis Bullosa. He said it can range from mild forms to very severe forms and at this point he could not even speculate what kind she had.
In 1997 internet access was limited so we had no clue what we were dealing with. When I first saw Kourtney in the NICU she was getting skin cut out of her mouth to protect her airway. After that they fed her with a bottle that she took easily. She was strong and feisty from day one.
When I finally went back to my room for a rest I could not sleep. As I looked out at Mount Baker from my window I saw my baby on an altar very similar to the makeshift breakfast table alter my dad created years ago. I thought maybe the Entonox was making me hallucinate. It seemed so real. From that moment forward that vision gave me so much peace that my baby belonged to Jesus and I was not in control.
Because it was a weekend and Kourtney was stable there was no rush to get her to Children’s Hospital to see a dermatologist . The NICU was full and because Kourtney did not require any tubes she was able to come to my room for the night. It was the worst night of my life as I learned very quickly how fragile her skin was. My hospital arm bad rubbing against her caused blisters. The tears began to come but Todd was, and always has been, a strong pillar of strength through it all!! He heard a song on a radio that became Kourtneys song.
Take my life and let it be.
Take my feet
Take my hands
Take my eyes
Take my voice.
(every part of her body that was and has been affected by EB).
Now, 23 year later. This has been a lonely difficult road. No matter how hard we tried to prevent it from happening the disease became more debilitating and disfiguring with age. I could get into the details but if you go to the https://www.debracanada.org/ you can read all about it.
Our life with Kourtney has been full of miracles from the first air conditioner we put into our house, the birth of Shaelyn and a lump sum of money we used to purchase our second home. There have been divine appointments that clearly we know the hand of God has been so evident in our lives.
We have blessed beyond measure by Dr. C. He refers to Kourtney’s birthday as “their anniversary” - since he has been her doctor from the time she was born. It’s rare to have a doctor that is so invested and willing to do anything for her.
Most of all it has changed my perspective of who God is. We live in a world where people will not open their hearts to Christianity because it’s going to change their lifestyle or they view people who go to church hypocritical. It could have easily been our story. . However, we could never live our lives without God and the message of Hope. We live moment to moment knowing we don’t have the energy, and the stamina to try and control this awful disease.
23 years later. Our lives have become richer, our perspective changed and an unbelievable love for this beautiful woman I call my daughter!!!
Happy Birthday Koko!!!!
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