"Why can't you just be NORMAL!" The words spill out of my mouth before I can stop them. I instantly feel ashamed as I look down at his scrunched up face in the crook of my elbow. A dead silence follows, his tiny body loosens up and the resistance melts away as he relaxes into my arms. I stare into his face which is dimly illuminated from the light of the alarm system perched on the lounge room wall.
"It's not his fault Ell, he can't help it, he's not the disease, he is in pain and he needs his mum"
It's 3am and I haven't slept. Just a few short hours before I had been tucked up in bed reading my book. Absorbed in the story and completely relaxed as Ian delivers me a cup of tea and biscuit - our nightly ritual. The hours fly by and at 11pm I sneak into our bedroom. I shine my phone light over Oli's cot where he lays upside down, not a blanket in sight. I cover him up, its a chilly 23 degrees in our room with the air-con blasting, the last thing I want is Oli to wake because he's too cold. I slide into bed and pull on my eye mask, sinking into my pillow I close my eyes and slowly exhale. Around 30 seconds pass before Oli started to whimper. The whimpering turns into full blown crying and I see his silhouette standing on the side of his cot as he bellows out to me. I reach his cot and lay him back down, after a few minutes of shooshing, bottom patting and back rubbing he's silent. I sneak back into bed and try to quietly pull the doona up over myself. Perhaps 15 seconds pass this time and Ol's screams wake Ian. After 15 minutes of attempting to settle him, Ian brings him into our bed and lays him between us. This would usually be enough to settle Oli to sleep, not tonight. The next two hours consist of Oli tossing and turning, rolling and sitting, even standing between us and falling back hitting his head on the wall and proceeding to screech in pain. When I begin to feel like I'm on my limit I lay Ol next to me and he pulls his legs up with a cry and lets out a huge amount of wind. I should have known, another tummy ache.
As I turn on the TV Oli bounces around the lounge room like its first thing in the morning. His chipper behaviour worries me a little as the prospect of him going to sleep anytime soon seems completely out of the question. I have come to the conclusion that its easier to let him play and clear his tummy than try to force him to sleep. I flick the kettle on and grab the milk from the fridge, a cup of tea fixes everything. I cringe as Oli throws every toy out of his toy box onto the floor, the sound thunders through the house and I urge him to be quiet as I think of Ian trying to sleep. "Stuff him....at least he's in bed! I'm the one out here doing the hard part" We get so ticked off at each other when Oli won't sleep, lack of sleep is a tortuous thing. Profanities fly around the room, tones are nasty and the phrase I hate you! (when your like this!!!!!!) gets muttered under my breathe more than I'd like to admit. Of course we don't mean it, but in those moments of pure frustration attacking each other seems like the only logical option.
As I sit on the couch flicking through the channels Oli plays in the corner with what sounds like a brass band soundtrack accompanying him. I find wind pain excruciating yet Oli appears unfazed as he begins to throw his nappies around the room. It's not long before the smell hits my nostrils and I chase him down in order to change his nappy. After a full change including nappy, singlet and suit he seems somewhat relieved. How so much poo could fit in such a tiny boy's tummy I will never know. I mentally run through what he had eaten during the day, nothing new or unusual. Why does this keep happening? What am I missing here? Is it his medications? Formula? The possibilities are endless. Oli has had tummy issues since before he was born. The damage to his bowel was the reason he came 6 weeks early and from that day onwards it's been a balancing act for keeping his gut happy. I tell people he hasn't been sick and that he has been so well in regards to his lungs. The constant issues with his tummy seem to be brushed aside into the 'wind' category like the occasional tummy ache or difficulty getting out a burp. The reality is much more painful and is the cause of a lot of other issues like sleep, settling and slow weight gain.
At 2.30 Oli is throwing every card out of Ian's wallet across the lounge room and becomes irritated as I take them off him. He then proceeds to stomp around the floor and lie down on the carpet. I whisk him up into my arms and begin rocking him back and forth. The next half hour is filled with him twisting and turning out of my arms, putting him down and picking him straight back up again. It's clear that he can't get comfortable as he refuses to lay in my arms. I'm tired and pissed off as I hiss the words through my gritted teeth... "Why cant you just be NORMAL!"
A normal baby who I put down at 7 and wakes up at 7! A normal baby who eats everything and never gets a tummy ache and poops normally and doesn't need creon! Fuck you CF! Get out of my baby and my life.
I have thoughts about CF all the time. They are hidden within the back of my mind but they are never directed towards Oli. Never spoken, especially not at Oli. I feel so guilty. I'm demanding an answer from my baby son who is so helpless, so innocent and vulnerable. What a terrible mother. This is the first time I've spoken the word "normal" what the hell is normal anyway? Is there any normal baby out there? Regardless of the ridiculous nature of my statement it continues to hang around me for the next few minutes reminding me of how selfish I had just sounded. Oli is finally out for the count and I put him back in his cot just past 3am. I crawl into bed and within seconds I'm asleep.
Sleep feels short lived as I wake to Ian's alarm at 6am. The familiar sounds of the bathroom door closing and shower running irritate me as I'm trying to get back to sleep. I slip in and out of consciousness as I remember the words I'd spoken to Oli last night. His ears must have been burning as he starts to cry, he easily settles next to me in bed and we fall asleep for another few hours. Ian comes in with a bouncing, smiling Oli after letting me have a sleep in. The beauty of this age is Oli had no idea what I said to him in my moments of frustration last night. Ian sits on the side of the bed and says goodbye as he starts to leave for work. Tears begin rolling down my face due to lack of sleep and the overwhelming guilt, I don't tell him what I said as I'm too ashamed and push it out of my mind.
All day it haunts me. I have prided myself on thinking positive throughout this experience, finding the positives in everything and not letting CF get me down. This lesson is so difficult. I love being a mum, being Oli's comfort any time he's in need or in pain. I would do anything in the world to ease his suffering. The hardest part is that this isn't a one off, it's not a 'I gave you too many lentils' now you have a sore tum, it's continuous, it's regular, and it's bloody unfair. In the dark of the night when everyone else is sleeping, it's forcing me to say things to my little boy that I wouldn't usually say. This disease and it's harsh effects on my baby's body twist my personality and push me to my limits. It makes me tell my husband that I hate him and my perfect baby he is abnormal. It creeps up on me when I'm tired, exhausted and at my wits end.
I stare into Oli's little eyes as I dry him after his evening bath, he smiles and chuckles as I tell him I love him. When he looks up at me all he sees is his loving mummy. He doesn't see the guilt, the frustration or the anger. He is my number one fan, my best friend. In these moments I forgive myself. I know the future will hold many more sleepless nights, tummy aches and frustrated, tired fuelled thoughtless comments but tonight I make a promise to myself & to Oli that I will never say those words to him again.