Poppy

Poppy’s Day

by Kate, Poppy’s mum

Mornings are getting tougher the older she gets. Sleep is constantly broken throughout the night when she is uncomfortable or the pain meds need topping up, so waking her at 6am when she is finally sound asleep feels just so unfair. There are tears that often lead to shouting before she gives in and finally wakes up to come and do dressings. We start with the usual concoction of medicine; pain relief and supplements. She never feels like breakfast after meds as she feels sick so then the gentle persuasion and encouragement to have something goes on for the next hour while I change dressings. We check her all over for new blisters and change any weepy wounds, replace bandages and fully redress hands and feet. This is often done in silence as she is so tired and I just want to get through it quickly for her sake.

Once dressed she then starts to eat. Her throat is probably the worst it’s been. She had a dilatation a couple of months ago but she’s not eaten the same since. Psychologically the fear of choking again or damaging her throat further have caused so much more anxiety around eating. She settles on a smoothie and a glass of milk and we get in the car. I drive her to school. She desperately wants to go with her friends but the logistics of getting on a bus with her wheelchair and the added journey time just make mornings even more difficult.

She doesn’t enjoy high school like she did primary school. The difference seems bigger. She hasn’t got the independence she thought would come like her peers and everything is just more physically and mentally demanding. It’s exhausting. We chat on the way and try to forget about the past two hours but she’s often teary-eyed before she gets out of the car and I leave her with her carer.

School is however a wonderful distraction. She’s bright and inquisitive and tries so hard at school with the greatest determination to succeed. The school is supportive and gives her allowances but she doesn’t take them. She wants to be treated just like everyone else.

After school, it’s a full bath and dressing change. The nurse comes and together we do the two-and-a-half-hour process of soaking off dressings in a bleach bath and then redressing every part of her entire body from the neck down. She’s tired, in pain, and very emotional. The distraction of her iPad helps but nothing can calm her at its peak when I’m applying creams and gels to open areas or draining a blister on the sole of her foot. She begs me to stop.

Afterwards, we have a hug and then she just wants to be left to relax and calm down. She tells me she’s so sore and everything feels tight. She puts on Friends and lays for a while, while I make dinner. Another blended meal that she really doesn’t want but will have to persevere with as she needs the energy.

There’s little time left in the evening so it’s homework and some TV or gaming with her younger brother before we carry her to bed.

The day is not quite over until splints are wrapped on her hands to prevent her fingers from webbing and contorting further and then finally lubricant is applied to her eyes to stop an abrasion in the night. I turn off the lights and lay on the bed with her stroking her gently until she falls asleep.

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