Toddlers and Tobramycin: being a mum with cystic fibrosis
H: “Mummy, it’s morning time, wake up! Can I have hot milk please? Can we go downstairs? Can I have your iPhone?”
As I approach her bedroom, H sees my bandaged hand and she puts her little hand to her mouth and asks, “Why isn’t your hand better Mummy?”
I tell her that there is a tiny tube in my hand and that the bandage is there to keep it in place. She is fascinated.
H: “A little tube? Why? Can I see it?"
M: “So that I can inject medicine into my blood stream.”
H: “Your blood stream? So it goes all the way around your body to your toes?”
M: “Sort of.”
H: “Can I see?”
M: “Later sweetie.”
H: “Can I see pleeeease?”
M: “Later, let’s go downstairs and eat breakfast first.”
H: “Erm… OK.”
It’s nursery day today. Hubby helps with the breakfast and getting H ready. After breakfast H is more concerned with Paw Patrol than my hand. She trots off to the car with Hubby quite happily, blowing me a kiss from her car seat.
I am left on my own with the house to myself. I only ever experience a day in my own company if I am ill. I walk through the house noticing everything that needs cleaning, emptying, washing or changing. It’s Friday, we’ve been working all week and I’ve spent my evenings falling asleep in front of the TV. I don’t feel up to doing anything.
As a child I managed the odd day at school with my arm strapped up. As a teenager, I attended my interview for sixth form with a long line in my arm, hidden under my blazer with extra-long sleeves. As a Trainee Solicitor I carried on working and actually walked to work because I wasn’t allowed to drive with the meds I was on. It always made me feel sick and a little dizzy and generally “ugh” but I coped with it a lot better. In the last few years I have struggled to leave the house. This time even more so than last.
This time the meds (Meropenem and Tobramycin) have aggravated my arthritis. Four doses in and I have lost my appetite, my face is numb and I feel dizzy. It hurts to move. This increases throughout the day.
Hubby arrives back with H in the evening and I am still in my dressing gown, having moved from the settee only to prepare and administer my meds. H walks through the door as I am sterilising the surfaces and starting to mix the meds.
H: “Mummy, Mummy, I missed you. What are you doing? Have you still got a poorly hand?” She shouts as she runs towards me with her little toothy grin.
M: “Hello beautiful.”
I get a kiss.
M: “I’m mixing my medicine.”
H: “Can I help you?”
M: “No, sweetie, you can’t help me. Everything has to be super clean and these needles are dangerous for little girls.”
H: “Mummy, I’m not a little girl, I’m a big girl.”
M: “I know you are but these needles are dangerous to big girls like you too.”
H: “Can I watch you then?”
M: “You can watch me sweetie, but don’t touch.”
H: “Thank you Mummy.”
She climbs onto the chair next to me, puts her arms around me and kisses my shoulder.
It takes twenty minutes to mix the meds with H’s arms around me. She asks questions without a break: “What’s that for Mummy?” “What is that called?” “Why do you put that in there?” “Mummy, Mummy, how much goes in there?” “Mummy, where does that go?” “Mummy will that go all around your body and reach your toes?” “Mummy, what are you doing now?” “Mummy, what’s that?”
I have finished everything; all syringes are laid in a row, ready to be used and I have removed my bandage from my arm when H sneezes a huge, propel-your-body-forward sort of sneeze, all over my perfectly arranged syringes.
Hubby comes running into the lounge: “What’s wrong?”
I explain. Hubby and H play in the garden for the next hour. I start again.