No one can ever prepare you for child loss. Ever. In my opinion, it is the hardest thing a human will ever experience in their lives. When your child is given a death sentence, no matter your child’s age, it is earth shattering.  I believe most parents have hopes and dreams for their child from the time of conception, and when those dreams become shattered, it’s hard to keep hope and faith. Since I’ve shared my experience with grief, I’m going to share Lily’s journey.

Lily was our third baby, a girl! Finally. Our family was complete with two boys and a girl.  Throughout my entire pregnancy on Lily, I felt different.  Call it intuition, gut instinct or a sign, but I felt like this baby I was carrying was going to be different.  I didn’t tell anyone about how I was feeling….might of mentioned it to Shane in passing but nothing to be worried about.  I even had a dream about it. I’ll never forget it.  I was probably 3 months pregnant at the time and didn’t know the sex of the baby. I dreamt that we had a baby girl, but in my dream, she was about 2 years old and she wasn’t okay. She was mentally delayed and had issues with her brain. I remember waking from that dream heart pounding and praying that it was just a dream and nothing more. I told no one. 

At my 20-week ultrasound, I remember the technician taking a long time taking pictures. She was quiet and not talking much.  I know this process because this was my third child, so I felt like something was off.  We couldn’t find out the sex that day because the baby was uncooperative in getting a good look. I remember when I got out, Shane asking me how it went (because he wasn’t allowed in) and I said it felt off. Two weeks later my OBGYN called to say they couldn’t get a good picture of the heart and something about a cyst in the brain, but I shouldn’t be worried because it can be common.  So, two weeks later we went back for another ultrasound. The technician that day was more friendly and talkative.  She explained that they needed to get pictures of the 4 chambers of the heart and that the previous appointment failed to get the pictures and the cyst in the brain is very common and usually goes away.  Sure enough, when they looked, no cyst.  All 4 chambers were there, and I was having a girl! Great appointment one would think.  Not once did anyone mention that all those were signs or “markers” for Trisomy 18. 

Fast forward to September when I’m 36 weeks pregnant. I should add here that every check up and appointment after my ultrasound was normal. Heartrate was good, lots of movement.  The only thing my doctor was concerned with was that my belly stopped growing after 32 weeks. I was sent for another ultrasound at 36 weeks to see how the baby was doing. That day was the beginning of the storm.  The technician said the baby was only measuring 31 weeks.  Uh oh.  So off we went to the OBGYN to discuss our options.  Since the doctor was two hours away, we rushed to see her leaving our sons with my sister.  Not thinking we would be induced, I never packed anything. When we arrived, the doctor called the hospital and requested another ultrasound.  Apparently, the radiologist couldn’t pick out the previous ultrasound pictures. So off we went for another ultrasound and a follow up on the maternity ward with the OBGYN on call.  Once there we had the new ultrasound pictures done. The news wasn’t good. The baby didn’t seem to be thriving.  She was under measurement and weighing around 3 pounds and there was little movement and barely any sucking. The doctor wanted to induce labour.

At this point I’m just going through the motions, not really aware of what’s going on.  I knew that all signs were leading to complications.  When I asked the doctor and nurses if something was wrong, they made it seem like she was only going to be small, but everything else was fine.  So labour started. After 12 hours of labour, the baby’s heart rate dropped. Emergency C-section was scheduled and our nightmare began.

I will never forget the look on Shane’s face when Lily was pulled from my body, briefly shown to me and then rushed to be worked on. The pediatrician was screaming and shouting at Lily to breathe and the anesthesiologist was trying to talk to me in a smooth calm voice to keep me from freaking out or becoming hysterical. But Shane’s face said it all. He watched as the doctors and nurses scrambled to work on her and then he’d put his head down. I will never forget looking at his eyes and seeing the fear and sadness. Right now as I type this tears are rolling down my cheeks and my heart aches. I have a big knot in my stomach remembering it all. I can’t imagine what it was like for him to see all that. The helplessness. His wife open on the table and him trying to remain calm while his tiny baby girl is lifeless…..Pure torture.

Eleven Minutes. That’s how long it took to get Lily to breathe. At that point, if Lily were a healthy baby, going 11 minutes without oxygen to the brain was not good. The doctors stabilized her and she was taken to another room. Shane left and I was in the operating room running everything through my mind while the doctors closed me up. The next thing I remember is being awakened in recovery by my friend who’s a doctor and the look on her face said it all. Sadness. They brought me back to my room where I was greeted by Shane. He looked devastated. I still to this day don’t know how he managed to be so strong during those days. He was still grieving the loss of his father two months earlier, yet he was my rock. It’s not good he said. I remember saying, what do you mean? At that time, the Pediatrician thought Lily had Cri-du-chat Syndrome. It’s a chromosomal condition where a piece of the 5th chromosome is missing. She would have developmental delays and complications but she would live! So Shane and I prepared ourselves for having a child with a disability. We were sad and disappointed but this would be our life now. We had to accept it. We could manage…..it would be new territory for us and we had a lot to learn but she was ours and we loved her!

We visited her while we waited for the Janeway team to fly in to get her. She had to be airlifted to the Janeway so she could receive special medical treatment and proper testing in order to confirm the diagnosis. She was so tiny and fragile. Three pounds, twelve ounces. She had tubes hooked up everywhere and I was afraid to touch her. For some reason and I don’t know why, I never cried up to this point. I guess I was in shock. I remember the nurses saying to me, you’re so strong! But what choice did I have? I couldn’t stop living. I couldn’t change anything that was happening. It was all out of my control. It wasn’t until the Neonatologist from the Janeway called me once Lily was examined by their team of doctors that I finally broke down. I remember Shane answering the phone and the doctor insisting on speaking with me. Is this Lily’s mom? I remember him asking. Yes, I said. All signs indicate Lily has trisomy 18 or 13 he said….and then something about failure to thrive and the likelihood of survival past a week was nil and we need to discuss a do not resuscitate order. I can’t remember the exact words or conversation because at that point all I heard was “a do not resuscitate order”. Open floodgates. This is where I hung up the phone and cried. I lost it. I remember sobbing so hard and Shane hugging me. We just received our baby girls death sentence and our world shattered.

Lily spent six weeks in the Janeway. We tried to split our time travelling from Baie Verte to St. John’s. It was so hard leaving the boys. Matthew was two at the time and it was the first time I was away from him. I think this is where Matthew’s anxiety started (details in another blog post!). Todd was four and handled it better. My sister and Mom took turns staying with the boys and I will be forever grateful to them for being there. While Lily was in the Janeway we had numerous meetings with different doctors. One meeting stands out because it’s the meeting the doctor looked at Shane and I and said “So you knew you were having a Trisomy baby right?”

“No” we said.

“They didn’t tell you?” he continued.

” Tell us what?” we said.

He then continued to say “No one told you you’re having a trisomy baby?”

Again we replied no. The doctor stopped, went quiet and said “oh”.

“Should we have known?” we asked.

“It’s in all the medical reports that you had Trisomy markers at all your ultrasounds”. He concluded.

Ummmmmmm, what???? Not once did any doctor indicate to us throughout the entire pregnancy that Trisomy was a possibility. Not once. Now this doctor is telling me that they knew all along? We were furious. The doctor was quick to change the subject and wouldn’t comment further on her reports prior to delivery. Unbelievable. Knowing during pregnancy would of changed everything! I would of never terminated the pregnancy, however when Lily was born, we would of let nature or God take over and no extreme measures taken. We would of had time to prepare. The doctors wouldn’t of worked for eleven minutes to keep her alive. Lily wouldn’t of went through the 8 and half months of pain and suffering, she would of been a stillborn. Some of you may think that is harsh and wrong. However, watching Lily struggle to take each breathe or eat was harsh and watching your baby die from starvation is wrong. The five years since her death have brought so much heartache and pain for our entire family. Having supper and bedtime conversations about death and fear of dying with our boys daily has been a struggle. The nightmares, fears, anxiety, unlimited mortality questions and so on have been challenging. No one knows what it’s been like for us. But Lily wasn’t a stillborn. No, she was alive and thriving!

Once Trisomy 18 was confirmed, Lily was moved to a different room…..one that wasn’t emergent for lack of a better word. She still had monitors and nurses checking on her, but not one on one like before her diagnosis confirmation. It was like her death sentence meant that her health care wasn’t focused on life saving but more on making her comfortable.

Lily had a number of health issues. After many conversations with the doctors and watching Lily struggle to do simple things like drink from a bottle or even breathe, Shane and I decided that Lily’s life would be focused on quality instead of quantity. We put her in palliative care. It was a difficult decision but after watching many near death experiences for her, we felt it wasn’t fair to make her suffer through procedures that in the end wouldn’t make her live any longer. In doing that, she was moved to the Corner Brook hospital for the remainder of her care. At this time Lily was six weeks old. She had already beat the odds. She wasn’t supposed to make it to a week old!

While she was in Corner Brook, we travelled with the boys to see and spend time with Lily. The boys were amazed with their baby sister! They loved to help bathe her and hold her. Todd would read to her and Matthew loved touching her. It was great for them to make those memories. Lily’s nurses were phenomenal. They showed her love and treated her like their own. It made leaving her easier knowing she was in such good hands. After 6 weeks in Corner Brook, we were able to get Lily to drink from a bottle and she gained enough weight that the doctor felt she could go home! Lily was almost 3 months old and coming home for Christmas. A miracle!

Deep down I was petrified. What if she died at home? What if the boys found her? What if she stopped breathing in my arms? What if…..?

Stay tuned for Part 2 of Lily’s Journey….Coming Home!

I have so much to talk about when it comes to death and grief. My outlook on life changed once I experienced it and I’ll talk about that in another blog, but today I’m going to talk about grief.

As the end of May creeps upon us, so does the grief wave. Lily’s five year death anniversary is May 29th and usually every year around this time, the grief wave tends to get a little higher each day. By the time the 29th comes, it’s high enough that our heads are underwater……only for a short time though, so we’re not drowning but long enough to have the wounds reopened to sting for a little while. Anyone who has experienced grief knows what I’m talking about, but for those of you who have been fortunate not to, let me explain.

For me, grief bears its ugly head at the most inconvenient and unpredictable times unless it’s triggered by something or an anniversary or birthday. You can be happy one minute and then all of a sudden you’re overwhelmed with sadness and bursting into tears. One minute it can be sadness, then anger or resentment, and finally loneliness or guilt. It is such an emotional roller coaster that it is exhausting. During the death anniversary, I always relive the days up to and including Lily’s death. Every. Single. Detail. (I’ll talk more about that in another blog, stay tuned!) Then I have a pity party and a why me Lord or a life’s not fair party, or blah blah blah. As much as I try to not feel this way, I can’t help it. And God help me if I see or hear sad movies, tv shows or songs! I become so overwhelmed with emotion. Sometimes I try to hide it around my two sons. I don’t want them to see that I’m sad because they still struggle with their own grief. Even though they were 3 and 4 years old when she died, they still remember and grieve her. If they happen to catch a tear fest and ask why Mommy’s sad, I explain that I just miss Lily a little more lately and they understand.

Death sucks and so does grief. Until you have experienced the most unbearable feeling of loss and heartbreak, you can’t understand. Sure you can try, and us grievers appreciate your empathy but the best thing you can do is just be there. Don’t offer encouraging words or advice on how to move on. Many of you try to make helpful comments in attempts to change our mindset like “she’s in heaven now or a better place”, or “she’s no longer suffering”, or my favorite “at least you had a daughter even if it was for a short time, you have to be grateful for that”. I know it’s coming from a meaningful place to make those comments but it doesn’t help. No matter what anyone says to try to help ease the pain, grief cannot be eased or helped or controlled. You just have to ride the wave. Period. So be patient with us. To you our grief may seem irrational or maybe selfish but to us our feelings are valid and real. However, this feeling will pass and before you know it, we’ll smile again. In fact, if you could make us laugh, that’ll be even better!

I have triggers that send the grief wave soaring. When someone you love dies, you don’t just miss them and the memories, you miss the future and what could of been. With Lily dying as a baby, I grieve her entire life….from her first steps, her first day of school, concerts, graduations, weddings, etc. You get the idea. So when I mention triggers, something as simple as attending a school assembly or concert is a big one for me. My heart breaks into a thousand pieces when I see little girls get up proudly in front of the entire school and participate. No one would ever know it though. I put a big smile on my face and clap with the rest of the proud parents, but inside I’m dying. Lily will never be up there. Enter grief wave. Yes, I’m proud of my two boys but someone else is missing and should be up there so says my grieving heart. That’s just one example. I have many. As absurd and silly as these thoughts might be to you, they are very real to me. Maybe you’ve lost a love one and haven’t had these experiences. I envy you. You might suggest praying and I’ve tried it. But since Lily died, me and God….well lets just say I’ve had a hard time with my faith. I really struggled with Lily’s pain and suffering and God’s role in it all. It’s only been this past year that I’m realizing questioning ones faith is also a part of grieving. So my faith and my relationship with God is a work in progress but I think it’s heading in the right direction.

Over the past five years, I have learned to just let the wave come. I’ve tried keeping busy or distracted. In the beginning I wrote poems to help with the grief. It didn’t help. One year we went out of town with the entire family on her anniversary. It didn’t work. No matter what I do, it’s a sad day and I’ve learned to accept it. It’s a day that I don’t want to talk to or see anyone and that’s okay. The next day will be better.

The point of this blog is to let you know that you’re allowed to grieve whenever, however you want. There is no right or wrong way. Just don’t stop living! Keep pushing through. Wake up and face the day acknowledging your emotions and in turn gaining strength to overcome the waves more easily. Grieving is healing. If you don’t allow yourself to grieve, then you are not allowing yourself to heal and that can take an emotional toll. I don’t believe one is ever completely healed with the loss of a love one, I think we learn to cope with the pain and over time that pain becomes more bearable. We learn how to continue living with our hearts broken and still be happy. A different happy but happy nonetheless. My hope for those reading this, is that when that grief wave comes, you swim or float or surf…do anything except drown!!

I’m Terri-Lynn Hurley and welcome to my blog!

I am happily married to my high school sweetheart Shane. We’ve been married for almost 13 years but we’ve been together over 22 years!

We have two children, Todd, he’s 9 and Matthew is 8. They are our world. Everything we do is for them. You’ll read lots about their life and our parenting journey as I add to the blog.

We also had a baby girl Lily, but sadly she died when she was 8 and half months old. She had Trisomy 18 that we were not aware of until she was born. She is the main reason for this blog.

Having and losing Lily has been the biggest storm I’ve had to endure in my life so far. I have struggled to find purpose of it all….she fought for every breathe she took on this earth and rather than drown in sorrow, I am going to honour her life with this blog. I am going to share our life story in hopes that something positive can come out of a negative situation…..a rainbow after the storm!

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

Welcome to my blog! My goal for creating Beautiful Chaos is to talk about my life experiences (both good and bad) in hopes that they will help someone. You see, I’ve gone through a lot in my life and I’ve been struggling to find the purpose of it all. The more I thought about it, the more I thought that it all can’t be for nothing. Something good should come of it. So, I’m going to share my story, all of it. The good, bad and ugly and in doing so, if I help only one person, then it was all worth it.

You’ll journey with me as I revisit some tough times in my life from bullying, sexual abuse, anxiety, child loss, grief, and more. There were also good times along the way, like my marriage and the birth of my two boys. I’ll give you my true raw feelings on each situation and what I found helped me. I’ll also talk about new topics as I continue on this crazy ride called life! So sit back, relax and happy reading!