The Grief Cycle
Updated: Aug 19, 2020
Understanding the grief cycle can be an incredibly effective tool in internalizing why one feels the way that they feel, what sentiments come next, and how one might know when they are arriving at a good place with respect to a loss.
Grief is not only reserved for the death of a loved one, but it can also be attributed to the loss of a job, a partner, a dream, an opportunity, a friendship, and quite commonly, our expectations.
The stages of grief are: shock, anger, sadness, bargaining, acceptance and returning to a meaningful life.
Below is my story of working through the grief cycle as I grieved the loss of the dreams that I had for my firstborn daughter once she was diagnosed with a genetic disorder and intellectual disability.
Disclaimer: I must mention that the more PG term for people with a disability or "special needs" is "exceptional" or "having exceptionalities" but the term "special needs" is inoffensive. The idea is that the needs of people like my daughter aren't special, because she needs love, support, education, food and water, just like anyone else does. On the other hand, she is exceptional, because she is thriving, EXCEPT she has some areas that she really struggles with. However; let me tell you, on days when a doctor is running late at the children's hospital, we've run out of snacks, my work phone is buzzing and my daughter is in a crappy mood, our circumstances certainly feel "special".
I digress, the Grief Cycle:
While I was pregnant with my now four-year-old daughter, the twenty-week ultrasound showed that she had enlarged ventricles in her brain. This led to a high-risk pregnancy, several level-two ultrasounds, amniocentesis, genetic counselling, and crossing our fingers that she would be okay once she was born. Like any naive newly pregnant woman, my focus was originally on baby names, nursery decor, and researching gear. It never even crossed my mind that anything could ever be wrong with my baby given that my husband and I were young and healthy and have no genetic disorders in our families. My lense was small, and admittedly, I was super naive.
When Paige was born, I was in the black, like any new mom, focusing solely on her beautiful olive skin, fluffy dark hair, and pouty red lips, however; when the paediatrician came to check on her and asked us what colour her eyes were, we said that we didn't know because she hadn't opened them up yet.
The genetics team rapidly showed up in our hospital room, made an assessment, and wrote the name of a very rare eye condition on a piece of paper and booked us an urgent appointment with the paediatric opthalmologist that day. I ignored that piece of paper, refusing to look at it, blocked out everything that the eye doctor said, and just let my husband deal with it all. It was like a movie scene where the character hears a ringing in their ears and everything else blurs and they just sit there stunned. That was me, but with leaky breasts, a catheter and a c-section wound. Good times, guys. I cried the whole two-hour ride home from the hospital but resigned myself to just focus on learning the basics of being a mother. So, I soaked in the joy and lived in a sweet state of repression and ignorant new mommy bliss and didn't google a thing. Truthfully, I was in shock; the first stage of the grief cycle.
About six weeks later, I couldn't ignore the diagnosis any longer, mostly because we had several appointments scheduled at the children's hospital with genetics, ophthalmology, and orthopaedics, but we were in a decent routine by then and more ready to take it on. The working diagnosis was an eye condition called Blepharophimosis Ptosis Epicanthus Inversus Syndrome (BPES) and Paige would need surgery at three months old to attach a silicone sling from her eyelids to her brow muscles to give her a functioning eyelid and to uncover her pupils so that her vision would develop correctly. I know it wasn't open-heart surgery, but this is my baby we're talking about.
This condition occurs in 1:50 000 people and is classified as a rare genetic disorder. No one we knew, not even doctor friends, had ever heard of BPES before. Luckily, we found a BPES group on good old Facebook and this global network of people sharing their stories of surgery, vision troubles, self-esteem, other genetic issues, and the encouragement was a lifesaver for me. I learned all about surgery prep, recovery, and what to expect in general and was feeling prepared and supported when the operation day came around. Most parents had positive anecdotes about how wonderful it was to finally see their child looking around post-surgery, expressed that their kids were so happy afterwards to see more and that the operation was no big deal, but this was not my experience.
I bawled as I handed my tiny little twelve-week old baby over to a surgeon because I hadn't been away from her for more than an hour or two since she was born. I hated seeing her shaking from the drugs, swollen, and so upset. I hated that she vomited from fentanyl and was so afraid to leave her sleeping on her back when we got her home. And mostly, I hated that her face had changed so much. I loved the way that she looked, even if she could hardly open her eyes, and just thought she was the sweetest thing in the world. What had I done to my poor innocent baby? I was mad at every parent in that group who spun this awful ordeal into a sunny no big thing adventure that didn't merit a tear. I didn't want to talk to any of them and fought the urge to post a nasty post-partum angry mommy post to everyone explaining how the surgery was awful and tell them not to do it. I was mad at all of my friends who had perfectly healthy babies and pregnancies. I was mad at anyone in my circle who didn't realize how big of a deal this was to me. I was petty Patty and the only attendee of a pretty crappy pity party. I compassionately laugh at myself now, but I had a lot to work through. I had moved into the second phase of the grief cycle: anger.
After a few days, Paige began to recover and get back to herself. She started eating well again, exploring the world around her, and I soaked in having her stare up at me as I fed her. It was beautiful, and it became apparent that we made the right decision for her. We were okay.
As I got back to scrolling through the Facebook group profiling other children with BPES, it finally sunk into me that Paige looked different, and even with surgery, would always look different. Then it sunk in that she would likely face some challenges as a person with visible facial differences her entire life. It broke my heart. It's funny how some things that may seem so obvious to some don't present themselves as easily to a grieving person. You don't want to know or you sort of acknowledge them somewhere in your mind, but you block them out because you know you're not ready to handle it all yet. Feel me?
At this time, I also started venturing out more with my newly recovered baby and experienced people's ignorant comments for the first time:
''What a sleepy baby!"
"Have you had her eyes checked?"
"Can she see?"
"Why are her eyes like that?"
"Mommy, why does that baby look like that?"
"Her eyes are crazy!"
"Her face is weird!"
...were some memorable favourites. I had no idea what to say in my post-partum stupor and usually mumbled something useless like "she's just tired" and then went home to cry. I was sad. I was sad that she had to go through the pain of surgery and face multiple surgeries in her life. I was sad thinking about her potentially being ostracized at school for being different. And, I was sad that it may be hard for her to feel okay in her skin.
But then, something clicked for me. I didn't know what to say, so I realized that I needed to research what I was supposed to say. I became tiger-mommy and special needs momma extraordinaire. I read blogs on special needs parenting and followed Instagram pages of exceptional people. I decided that if I pitied her, then she would pity herself, and I was going to raise her to be strong, fierce, resilient, and tenacious. I jotted down a few mantras to keep in my back pocket when a stranger made a comment about her face. They included, "she was just born that way", "she had to have an operation on her eyes", and "she can see, she just has smaller eyes". I told myself that the universe only gives you what you can handle, and I convinced myself to fall in love with being a special needs mom; the high highs, the low lows, the journey, the depth, and the pride in the extra hard work. I had made annual Facebook posts on rare disease awareness day that told the world that Paige would inspire others throughout her life and I committed to doing everything that the speech therapist, OT and physiotherapist recommended.
Although those efforts were positive, they were also part of my grief as they were my way of bartering: reaching out for support, trying to find meaning in the mommy madness, and attempting to fulfil my need to tell our story. I thought that I had figured it all out, but I was desperately grieving and still had a very long way to go.
Fast forward to wearing a harness for four months after that to straighten out some hip dysplasia, sitting at nine months, crawling at fourteen months, and finally being diagnosed with genetic deletion syndrome and global delays at fourteen months old, learning to be Paige's mom has been a grief-filled and joy-filled process of evolution and growth. Not only did she have an eye condition, but we needed to absorb the fact that she also has an intellectual disability and will learn at a different rate than her peers. She walked at two and a half and is currently in the first percentile for fine motor, gross motor, and cognitive function for her age, whatever that means. I constantly move through the grief cycle and each occurrence takes less time. Just when I think I have accepted everything, we get more news from daycare or a doctor stating that "Paige has trouble doing A, B, and C..." and it often spins me into another round of repression (shock), tears (sadness), unfair criticism of our doctor and the North-American way of measuring kids' abilities (anger), tiger-mommy mode (bartering), and some peace afterwards (acceptance).
But here is the message - I know this now: I know that what my mind is doing is normal, I know that I am human, and I know that I will be okay. I love understanding where I am at, giving myself compassion, and trusting the process of acceptance. I don't know if I will ever fully accept my daughter's lot in life, but that doesn't mean that I feel negatively about it. I have learned to feel my feelings and not quickly rationalize them with dismissive thoughts of "just be grateful" and "it could be worse". I am allowed to be mad that my poor kid has to get poked and prodded ALL THE TIME while some kids only see a doctor twice a year. I am allowed to be sad when I watch other kids Paige's age running and jumping while Paige can't. And, I am allowed to advocate for her with passion, pride, and persistence as I learn and grow as her momma. I am grateful for good Canadian health care, wonderful support systems, and for being able to conceive in the first place, but I can be grateful and grieving all at the same time.
With warmth and fortitude,