This post is so hard to write ... once it is written I won’t review it. I just can’t ... *deep breath*
On 11 March 2017, our very planned for, very loved baby girl was born. We called her Mackenzie and she was pure perfection. I have never felt happier and more at peace with life.
Jonny and I had spent all of the time that I was pregnant with Mackenzie, worried that we would miscarry again, or that she would be stillborn. When she was born we breathed a huge sigh of relief. She looked perfect. She was checked over by the hospital’s paediatrician, who told us that Mackenzie looked perfect but had a slight heart murmur. They said it was likely to fix itself but they would need to check her at around 8 weeks old. We were terrified by this news but tried to put it to the back of our minds for those 8 weeks. In the end we learned that it did repair itself but something much worse was waiting for us.
Jonny and I had ten blissful weeks with Mackenzie before our world fell apart.
At ten weeks old I took Mackenzie to a lactation consultant because I was concerned that she finished each feed by crying. The consultant said that there was no problem with her feeding but mentioned that she seemed 'floppy'. The initial thought that flashed across my mind was, “No, she isn’t, she is perfect” but then the lactation nurse pointed to a baby boy on the change mat next to Kenzie and said “He is about 10 weeks old and that is what she should be doing”. When I looked at him, he was on his tummy and had pushed his chest off the ground with his forearms. My stomach sank. I knew something was wrong. Kenzie didn’t do that.
I ran out the door cuddling her close to my chest. I thought it must just be a lack of exercise with tummy time. “It will be ok. It will be ok,” I told myself.
We had just moved to a new house and didn’t know any of the doctors around the area. So I quickly drove to the nearest medical centre and made an appointment. The doctor did not ease my concerns. She called around trying to find a paediatrician. The very fact that she was trying so hard to get us into an appointment so quickly made me even more concerned. She couldn’t find anywhere that could take us in under a week.
I couldn’t wait a week and ended up calling another paediatrician I had heard about. Like all the others there was a long wait and I burst into tears on the phone with reception. They squeezed us in for an appointment two days later.
For the next two days we watched her carefully. We justified each movement, practiced swatting with her hands, and forced her to do the tummy time she hated so much. She cried every time with her face in the blanket, she just didn’t like it. Jonny convinced himself that it was our fault that she was so floppy and weak as we hadn’t done enough tummy time with her.
Two days later, we walked into a pediatrician's office. I have never been so nervous in my life. I felt nauseous, my whole body tingled and my palms were sweaty. I felt faint. The paediatrician asked us a few questions and then asked us to undress her apart from her nappy. He moved her around, as she lay on the examination table, watching how she reacted. I was watching her so closely. This is MY baby and surely she is fine, we just have to do more tummy time.
After two short minutes, he turned to us and said that he believed she had Spinal Muscular Atrophy (SMA) type one. Just like that. He said it fast with hardly any feeling. We had never heard of it but even the sound of it wasn’t good. But since he told us with such little show of emotion or even sympathy, we felt there must be a solution. So we asked the obvious question, “What is the cure?”
He said flatly, “There is none. It is terminal”.
Terminal. Terminal. Terminal. Terminal. The word echoed in my mind.
Just like that, our world fell away.
I shut down. Everything went blurry, sounds were muffled and I felt like I would collapse. I stood over her as she lay quietly in her nappy on the bench. I held her hands as she stared up at me. We locked eyes but she knew nothing of the knife that had just just torn through my heart. She lay there, oblivious to my turmoil. I went to pick her up but my legs were shaking so badly that I hesitated. I started dressing her as I heard Jonny’s voice asking questions. He went straight into work mode wanting to know all the details. I didn’t hear a word of what was said.
My mind kept saying, “This isn’t happening, this isn’t happening. He is wrong.” But I knew that he wasn't.
I picked her up and rocked her, and myself. At one stage I turned to Jonny and said “What just happened?”. We walked into that office thinking we just were lagging in her tummy time, just a simple developmental delay. And walked out in shock. How was this happening? It wasn’t really. Was it? I wanted to scream.
The paediatrician told us that there was a new clinical trial which was showing good results. It was only four months old but some were calling it a miracle treatment. We clung to that hope as we left his office with a referral to a neurologist.
We walked out in silence. Without a single word exchanged between us, Jonny and I carried our baby out of the hospital and down the street. All around us people walked in their ‘normal’ world like nothing had changed. A drunk sat on the corner drinking a bottle of wine. I wanted to smash it out of his hand and scream at him. “How can you wreck your body when my daughter doesn’t even get a chance for a life. MY BABY WILL DIE. Fuck you! You don’t deserve this life.” But instead we kept walking in silence, people bumped into us. It seemed that the world was too busy to stop for us. We walked into the carpark and placed her in her car seat. We got into the car and sat there with the tears running down our faces.
Taking her home we were in a daze. We called both sets of parents to tell them what the pediatrician said. I don’t know how we made those calls. Half crying, half stunned, still not believing. They were shocked. No one knew what to say. What was there to say?
Our appointment with the neurologist was the next day. We could not sleep that night. I cried all night and watched her little face, holding her hands and whispering to her, loving her.
We said to each other, “This isn’t happening, this isn’t happening. We are good people. We are police officers, we pay taxes, we give to charity, we planned for her, she is here, she is perfect.”
I am not religious but I started bargaining with someone out there. Any one. Any god, any higher power or spirit that would listen. “Please ….”
I know (and will never be convinced otherwise, so don’t bother trying to tell me) that there is no god. The thought of one almighty power might help some people but all it does is hurt me, it mocks me. Don't get me wrong I believe there is more to this world, somewhere we go or spirits surrounding us but there is no god. No god would give a baby a terminal illness. No god would make a parent watch their child die but give them no power to change it. There is no higher purpose to her terminal illness. Don’t try to tell me there is. You haven’t seen what I have. But even if I am wrong and there actually is a god I will still never worship them. How could I possibly worship a god that took my daughter, that kills a baby making them suffer. * I don’t mean to offend anyone, but these are my honest feelings which is the point of my writing.
The next day we drove to the neurologist’s office. Silent and terrified. We walked into her office and again Kenzie was put through some movement tests. The neurologist turned to us and said that she was 95% sure that Mackenzie had SMA but it would need to be confirmed by a blood test.
Naturally we wanted to know more about the ‘miracle’ injection. We were told that it is not such a miracle after all. Whilst it is a huge medical advancement, as there is no other treatment for SMA, the injections would only delay the onset of more severe symptoms. Meaning Kenzie would simply be older and more aware when she died. There is no cure we were told.
“No cure, no cure”, the words spun around inside our minds.
As our neurologist spoke to us, the room slowly filled up with more people. There was a nurse, an assistant, a geneticist, a social worker ... and the seriousness of our situation began to become clear to us. We were thrown information left, right and centre about Kenzie, her prognosis, treatment options and palliative care. We discussed the need for a resuscitation plan for her. And finally, our future prospects for more children.
I cannot really describe how we felt. It was a living nightmare and we couldn’t wake up. We haven’t really woken up from it since that day.
But … somehow we hope we have made some good out of it for ourselves and for her. She deserves that and so much more.