As I looked at my 14 year old daughter in a moment of celebration and pride, I was struck with the thought that she is the perfect living example of the age old adage, “What doesn’t kill you makes you stronger”. She is amazing. I am at a loss for words when I try to describe my love for my kids. They amaze me every day.
In Caylie’s short life, she has already met more challenges with grace than any person should have to, let alone a child. It would be so easy at any time for her to live life as a “victim”, but she ploughs through every roadblock like stepping up a curb, with ease.
Caylie blessed us with her presence on April 20th 2001. Everyone has a birth story, and hers, in true Caylie style, was far from normal, included a little drama, and a lot of flair.
April 19th was a Thursday. It started out like any other day. Shaye finished work shortly after 1pm, came home and had a nap, then prepared to take me to my OBGYN appointment. He wasn’t feeling well, he said he had a bit of a tummy ache, but passed it off as having had over eaten earlier in the day because one of our favorite restaurants, The King and I, had made an appearance on Global’s morning television news show, and had brought a feast to feed the cast and crew.
I was 39 weeks (minus a day) pregnant with our first baby. I felt awful too, but had no idea how I was supposed to feel, so I passed it off as just being VERY pregnant.
It just happened that this particular Thursday, our local hockey team, the Edmonton Oilers, were set to play game 5 of a 7 game playoff match against the Dallas stars. The series was tied 3-3 if I remember correctly. I was oblivious to this fact, although I am certain Shaye had a little bit of “man, I hope this appointment is a short one, there is some place I NEED to be in a couple hours.” (Any place with a big screen tv).
I was suprised to see the waiting room was basically empty when we arrived, and I immediately went with the nurse to be weighed, pee in a cup, the usual. Then she put me in a room and asked me to undress because at this particular appointment, she said, it was normal for the doctor to do a physical exam to see what, if anything, was going on in Caylie’s temporary home.
When the doctor walked in, I remember he and Shaye exchanging man talk about the big night, and he was wearing an Oilers neck tie, so it was clear he had big plans too. He said he wasn’t sure why the nurse had asked me to undress because he explained he didn’t check his first time moms until their due date because they are so often late, but did say he would if i had any concerns or reason to. I shyly explained that I hadn’t been feeling well, and had some tummy pain, and while had no idea what I was supposed to be feeling at this point, I was curious to see if everything was ok. Please note, that I now know requesting to be checked can lead to some major discomfort, and if you ever find yourself in a situation like that, consider yourself warned, it is not fun.
He started his check, and quickly announced that she was in perfect position, I had dialated slightly no big deal (he said I could potentially walk around like that for weeks), he felt her head (seriously, take a second to think about that 😳…or don’t, I’ll understand). All was good. And he was clearly in a hurry to get out. I was his last patient of the day. I dressed quickly and we were out of there.
On the way home, Shaye said he still wasn’t feeling well, and mentioned his tummy pain was getting worse. I turned to roll my eyes at his complaining while I sat there holding the basketball that used to be my tummy. But when I looked at him, I noticed that he was looking distinctly yellow. Like his eyes could glow in the dark. We decided it would be best of he dropped me and my basketball off and drive straight to the office of our GP. I had big plans to build our baby swing, he had big plans to watch the game.
He called less than 30 minutes later to make sure a friend of mine was still planning on coming over to help me because he didn’t want me to be alone, and our GP had made arrangements for him to go straight to the Emergency Room. I was 39 weeks pregnant, hormonal, emotional, and there was no way I was going to sit at home while he was in the hospital, so we agreed to meet there. The good news was that the hockey game was on in the waiting room. It wasn’t the mandatory big screen our boys required for game nights, but it maybe kept some patients from bolting and heading to the nearest pub?
To his disappointment though, Shaye was rushed through triage and went in right away. It was a good thing I was there for support (and to periodically check the score when he needed it). The next few hours were a blur of scary words being thrown out by the doctors, and with every hour, my stomach got harder, and MY tummy ache worsened. A nurse put her hand on my stomach and asked if I was having contractions, I said I didn’t think so, but I was beginning to wonder. Everyone was trying to convince me to go home. I was feeling like if I was going to leave, it would have to be with force, I had no idea how they expected I could just leave my husband there when we were still waiting for so many results, an ultrasound, and the a potential outcome that was super scary. I was forcibly removed just before midnight. I agreed to go to my mother in law’s and sleep on the couch (if you could call it sleep). When I did sleep that night , I remember having dreams about a stomach ache.
When I wakened at 5am, I was bleeding, but convinced myself it was all good, all normal. This is about the time I could have sincerely been labelled “mentally unstable”. I had decided that I was NOT having a baby that day no matter what. There was too much going on. On the way back to the hospital (I drove myself) I stopped at my grandparents house to inform them that I was NOT HAVING A BABY, and to update them on Shaye ‘s condition. Something I could easily have done over the phone, but felt it was better to do in person…at 5:30am. Are you starting to see my “crazy” yet? They saw it, but true to their style, they calmly reassured me that everything was going to be fine, agreed with me and nodded their heads a lot. They gave me a hug and assured me they would be close to the phone and ready at a moments notice if I needed them, but assured me again that I wouldn’t because everything was going to be ok.
My tummy ache was getting stronger and seemed to have a rhythm now. When I arrived at the hospital, I was feeling jittery and couldn’t just sit, so I asked Shaye if we could take a short walk through the hall together. ( I didn’t say why , I had no plans on telling him anything because I had no plans on having a baby that day). I remember having to stop in the hall and grab on to the rail at one point for a moment because I felt like my uterus was going to fall out, but I didn’t want to show any sign of pain so I made small talk with Shaye. This is where I started to get really weird.
Shaye was, STILL waiting for an ultrasound. After rushing to get back to him, I had somehow convinced myself that I it was normal that I wanted a shower, and felt a burning desire to shave my legs. I called his cousin’s home (who lived close to the hospital) at 8 am and asked if I could come over to use her shower. Totally normal right? People randomly ask to jump in other people’s showers all the time . When I arrived , she made me sit and tell her every time I had my “stomach aches”, and as soon as I was safely in her shower , she called my doctor to tell him I was clearly in labour, but I was still I was NOT going to have the baby. They advised her to tell me that I had 2 choices. Choice A. I go back to the hospital with her to be “checked out”. Choice B. They call an ambulance. They were serious , I was given 10 minutes to decide and if I hadn’t made a decision , I would default to Choice B. I was mad, but reluctantly went with A. The cousin packed up her 4.5 month old baby, and off we went. I sincerely thought I could tell THEM how this was going to go down. I swore at the poor nurse AND the cousin when they said I had to be admitted, and take a ride in the wheelchair, I knew what that meant, we took the prenatal classes. I told them they needed to take a different route to the maternity ward because I didn’t want Shaye to see me being wheeled past his room and cause him worry when there was no point because I was NOT planning on delivering a baby that day anyway. Again , they didn’t listen. I held my breath as we wheeled past Shaye , but was pleased to see him sleeping. It was now 10:00am.
They checked and said I was 5 cm dialated, and although my water hadn’t broken , I was indeed going to have to deal with the fact that I was having a baby that day. My first thought? CRAP, I’m going to have to cancel my lunch plans with my sister. So I requested a phone and called her. She says I litterally said ” I have to cancel our lunch date because they told me I’m having the baby” and hung up on her. She spent the next hour calling and running all over town trying to find what hospital I was in.
They brought in what can only be described as a GIANT knitting needle and tried to break my water (aka amnihook). Every time someone was unsuccessful, another would insist they could do it . If one more person went up there with that hook I don’t know what I would have done . Then they said they needed an ultrasound, and just like that , wheeled one in. I asked if they could first wheel the unit with a nurse downstairs for a moment because ironically my husband had been waiting all night for one of those . No dice. It was now 11:30am, I was 8cm dialated , and Caylie was not planning on coming out. They announced that she was an “undiagnosed Frank Breech”. Her knees were up by her ears, and her bum was blocking her exit door. Like , sealed shut . That’s why my water wouldn’t break . It turns out my “water” was broken all along, she was just plugging the hole. In fact , when she did finally make her debut, her bum was covered in scrapes from the knitting needle. I hate that thing.
How was it even possible that she was “Frank Breech”? The doctor had told us her head was down the night before. The nurses said she must have turned over night . Uh, NO. Had any of them actually BEEN 9 months pregnant? There is no way that baby turned around and I didn’t notice. Suddenly I was remembering the doctor’s hockey tie, and how rushed he was. No, he made a mistake. No big deal, we all make mistakes, however, this guy was about to slice me open and take out my precious baby girl. They announced I needed an emergency c-section, and I soon had enough drugs running through me that I didn’t care anymore who was taking her out, what day it was, or anyhing else really.
In the meantime, poor Shaye had been told he had a stone blocking a liver duct. Probably the very best of diagnoses given the possibilities, but he needed a laparoscopic procedure to remove it. We now had 2 departments at the hospital trying to coordinate how to get this patient/daddy into my surgical suite for the delivery of his precious “monkey”, and then back to have his own procedure done. In the end, the decision was to release him into his father’s care with enough medication to withstand the pain, but not so much he wouldn’t remember this momentus occasion, and book his laproscopy immediately after. Truth be told, we are fairly certain they needed a break from him. He had started getting anxious and unruly.
Shaye arrived just in time, and Caylie graced us with her presence at 11:58am. She was amazing. She scared us a little because she didn’t stop screaming for 2 hours. We are still not sure if it was the cuts on her bum, the chaos of it all, or she was just hungry, but when she finally decided to stop, that was it. She was the quietest baby ever, and slept through the night before even leaving the hospital. We THOUGHT the difficulties were behind us.
Caylie was everything we were expecting and more, an angel, but there was something bothering us. She didn’t seem to open her eyes, and when she did, they wouldn’t open far. We asked numerous times if there was a problem and were told it was probably just swelling from a traumatic delivery. What? She was delivered via c-section. Why would that have caused swelling? We wanted to believe them though, so we did. At her 6 week post natal appointment, the doctor looked at us and said there was a problem. it felt like our world imploded. Our hearts were torn out and broken. My stomach was on the floor. He said he would refer her to a specialist, and his assistant would call for the appointment before we left. That was it. We were crushed. We walked out of his office, and received our appointment time from the receptionist. She made the appointment for 3 months down the road. 3 MONTHS. That’s 12 weeks. How could we be expected to wait 12 weeks?? We begged her for something sooner, she said that was the best she could do.
What is the first thing anyone does with a new diagnosis? Right or wrong, we look to the internet. Scary doesn’t even begin to describe what we found. Her paediatrician had been no help. We asked all the questions. Would she grow up with normal vision? If this is some sort of “genetic abnormality” could there be anything else affected? Would she develop normally? He had no answers except to say she needed to see the specialist.
I cried. Shaye took action. He started calling around that afternoon trying to find a paediatrician who could offer more help. He was given Dr. Lyle McGonigle’s name and told to call and ask for him, but in order to get through to him, he had to continue to say he would hold for the doctor. Even if it took all day, we were told, he was worth it. After explaining our situation to the doctor, we felt a tiny bit of hope when he asked us to bring her to his office by 8:30 am the next morning so he could see her.
He was amazing. He diagnosed what he thought was “Blepharophimosis Epicanthus Inversus Syndrome”. We were so confused.
Dr. McGonigle said he wanted to be certain, so after giving her a kiss on her forehead, and reassuring us that she was the perfect angel we thought her to be, he sent us across the street with a piece of paper with the alphabet diagnosis written down (we still couldn’t even pronounce it) to see a paediatric ophthalmologist. That doctor agreed with the diagnosis and sent us across town to Dr Johnson’s office. Dr. Johnson was the doctor we were told the day before that we could not see for 3 months, and we had managed to see him the next day. He was to be the doctor we trusted to perform many surgeries on our angel. All 3 of those Doctors became her “team” in the years to come. We knew she was in good hands from that day forward. We are forever grateful to the Stollery Children’s Hospital. We are so incredibly blessed she was born here in Edmonton. We have heard of so many different outcomes, and know families who have had to travel from other provinces to see the very same doctors.
Caylie has had 7 surgeries (we think…in all honesty we started losing count). Horrific for any parent. We saw tears of blood. Flailing on the surgical table when she was refusing the gas. We saw her held down. You want to scream, but you can’t. As a parent, you have to set it all aside and be strong. Was it worth it? She has 20/20 vision. We were actually told that had we waited the 3 months to see the specialist, she could have been blind because baby’s brains adapt so quickly, and if she wasn’t getting enough light into her eyes, her brain would shut that connection down.
Caylie is a great example to kids who may look or feel “different” for one reason or another. She doesn’t use “different” to describe her eyes as much as “unique”. She has always found a way to use her story to motivate rather than hold her back. She loves performing/singing in front of an audience, any size. I can’t do that. Caylie continues to blow me away with what a strong, confident, kind, brilliant, and beautiful young lady she is, inside and out.
She has taught me so many lessons in life. One of the most important lessons is helping me through each day leading up to my Stem Cell Transplant. Stay calm, don’t borrow trouble, and carry on. You can apply that to just about any situation in life. We never know what the outcome of any given situation will be, but I know that all of the worry and fear I had for her didn’t help a bit. Fear is debilitating. Learning to “Let go and let God” has helped carry me through so many situations, and has freed my mind to focus on what is needed. Mind you, I still have a little freak-out before I am reminded every now and then 😉 But hey, we are only human after-all.
Trish G 