Coping | Disability | IBD
Alyssa’s adorable son looks up at Mum during her infusion.
There’s blood on my t-shirt. My 10-month-old son has reached up from my lap and tugged on the IV line attached my elbow. He’s squirming, desperate to get down to the floor. He screeches in frustration as I try to calm him with only one arm. Every cry elicits rolling eyes and a grumble from another patient in the corner. The panic is rising and it’s only amplified when I feel my lap get suspiciously warm. My son has managed to pee all up himself, soaking through two layers of clothing. The nurse can sense my distress and detaches the IV. We’re moved out of the infusion clinic and down the hall to a storage room.
I change him on a spare mattress on the floor; the kicking legs and flailing arms making the task almost impossible. He’s two hours overdue for a nap and the lights and sounds of the ward aren’t helping. Another nurse hears his cries from the back room and brings custard and stewed apple from the kitchen. While she feeds him from the floor, I’m hooked back up to my infusion. This is the medication that keeps me stable; allows me to function, work full-time and be a mother on top of everything else. Without Remicade, I would have never escaped the cycle of flares, surgeries and pain. I need it. I feel my body start to ache and fatigue when the supply gets low. I have to be here, but my son isn’t old enough to understand that.
I can’t explain to him that Mum is sick; that she’ll always be sick and there will be many, many more days like this. I can’t explain that all this waiting around is actually for something. I can’t apologise for not having the energy to always be the mum he needs or for keeping him in the carrier against my body as a tiny baby when I was home alone and desperate for the toilet. My thoughts start to spiral, just as they did when I was pregnant. Am I really a good mum? Will the Crohn’s impact how he sees me? What if I’ve given it to him? Will our bond be as strong if I’m spending half my life in the bathroom?
Alyssa’s son plays with the IV cords while waiting at his mum’s infusion.
I have to keep stopping him from crawling down the hallway; I’m frantically pushing the IV pole around the room and taking his hands off hospital equipment that can’t have teeth marks on it. Then I slump back in the chair in the corner, defeated by the never-ending energy of a 10 month old. He’s showing his custardy grin to everyone who walks past the door and clapping when they talk to him, but something inside of me has collapsed. I’m on the verge of tears; my hand shaking over my jeans. I hear my sister’s voice in my head, “Pursed lip breathing. Slow and steady”. I’m trying to stop the spiral; trying to remember all the things my psych has said over the months that I struggled with postnatal depression.
My son has noticed that something in the air has changed. He crawls over to me, lifting himself up; his tiny hands on my knees. Looking at me, he smiles and rests his head against my leg. In that moment, I realise that no matter how anxious or sick I am, I’m still a safe place for this little person. I’m his whole world, even if it’s not perfect. One day he will understand that I’m not quite like other mums. Hospitals, doctors and waiting rooms will become his normal. But as he gets older, I can make those trips more fun. And no matter what, I’m still capable of giving him every ounce of love I’ve got. He will never be lacking when it comes to that. And if, by chance, he does have an autoimmune condition down the track, I’m uniquely equipped to be able to help.
The flush finally finishes on the IV and I’m disconnected from the machine. More blood gets on my shirt because I can’t put my finger on the bandaid quick enough to stop it. Gingerly picking up my son, I place him in the pram and get ready to leave. As soon as the wheels start to turn, his eyes shut. He’s exhausted and so am I. The midday sun outside replaces the harsh overhead fluoros of the hospital. The air smells like baked goods and flowers, not sanitiser and gloves. I look down at my now snoring son and I know that we’re going to be okay. I’ve managed every other adjustment I’ve had to make since my diagnosis with IBD. The chapter that began with the unexpected positive pregnancy test is a unique, uncharted challenge for me, but as a family, we’ll make it work.
My love for my son is bigger than my anxiety about being a mum with Crohn’s. But for my next infusion in 6 weeks, I will sure as hell not be bringing him with me!
