This is Kipper. Yesterday Kipper danced in his annual dance show. This was after spending the last week away on his year 6 residential trip to PGL. Mum thought that Kipper would be tired for the show but he was a complete superstar.
This is Biff. Yesterday Biff also danced in her annual dance show at the local theatre. Biff loves to dance and when she grows up she wants to be a professional dancer.
This is Chip, he is the oldest. Chip went to the theatre yesterday with Mum and Dad to watch his brother and sister dance.
This is Mum. Mum adores all her children and it is the highlight of her year to watch them up on stage performing with confidence and a smile.
Biff has hEDS and CMT. Mum knows that it is very unlikely that Biff will ever be a professional dancer, some days she has to use a wheelchair because of pain, fatigue or partial dislocations. Mum doesn’t want anything to hold Biff back so she encourages her to achieve her dreams and hopes she re-adjusts them a little herself as she grows.
Biff is starting to crash today. Her legs are like jelly, she feels sick and she hurts, especially in her knees. Mum acknowledges that her pain is real and doses her up on pain medication before school. Mum has learnt that distraction works best to manage Biff’s pain and she is desperate to get to school as they have an assembly on yo yo’s.
Kipper is up and dressed in no time and is busy working out the best yo-yo to purchase at the best price.
It’s lunchtime and Chip is struggling to stay awake and has missed his first lesson at his online school. Chip has hEDS and ME. Two years ago he was dancing in the annual show with his brother and sister and he was in the dance crew. This year watching the show has caused him to crash. He can’t speak, hurts everywhere and watching rubbish on the tv takes too much energy.
It’s days like these when Mum knows that they made the right decision to cancel the family holiday to Greece. If Chip can’t travel to the local theatre he would never travel to the airport, let alone fly.
Mum was waiting for the phone to ring to collect Biff all morning but school haven’t called, she hopes this is a good thing. The school are very good at managing her condition. Thankfully.
As Mum leaves for the hospital the post drops on the mat and it is Chips final EHC Plan. The LA have named a school that can’t even enter him for his GCSE exams. Mum can not deal with this right now as she has to go to hospital to persuade the surgeons not to operate on her feet and to inject her with cortisone instead. She hasn’t got time to recover from a surgery at the moment (but a little less pain would be nice). She decides to formulate a plan about how to deal with Chips EHC Plan when she has poured herself a large glass of wine later.
Mum has worked out that a glass of wine is doubly good for her. It helps her to think a little clearer and dulls her pain. Two glasses however can have the opposite effect (on the clarity of her thoughts, not her pain) Three or more – not a good idea.
Mum’s appointment is at Stanmore hospital. Mum always wondered why a National Orthopaedic Hospital would be build on a hill but she knows that she is lucky to be seen here. As she sits waiting for her name to be called the pain radiating from her hip steadily increases and she wonders if she might be being seen in the wrong department.
As Mum drives home her hip pain becomes much, much worse. She hopes that Chip has woken up a little and will manage to eat. It’s days like these when she realises that everyone else’s life is moving forward while Chips is not. She also wonders how long this crash will last, a few days, a week, a year? Then she stops herself and tells her self to stop stressing about things that she has no control over. Just be mum. Mum is getting better at talking herself out of catastrophising.
At least the surgeon has ordered an MRI, a little surgery for now may solve the problem rather than an injection and she can still put off full foot re-construction for a bit.
Mum cranks up the tunes and tries to get home to her babies as quick as she can. In London traffic. In the rush hour. A song comes on from the show, mum smiles, remembering Kipper hula dancing on stage his grass skirt and coconut bra. Mum thinks they are all perfect in their own way.