I don’t do self-pity.
I used to do it like a bloody boss. If I had a sniffle, a slight tummy ache or had slept less than seven hours the night before you would know about it. Even if we weren’t friends I would make sure you knew about it. Because I liked to moan.
But after birthing one child with a genetic disorder, one ‘normal’ child, one debilitating bout of post-natal depression and one divorce later I seem to have forgotten the art of self-pity. Which is a shame. Because I was so good at it!
This week I was at Great Ormond Street Hospital for two days to accompany Elfie on her annual sleepover, so her specialists can monitor her closely over a 24 hour period. Everything is looked at and bloods are taken twelve times at two hour intervals. I was dreading it because last year it wasn’t a nice experience for her; she hated the painful cannula and wouldn’t sleep.
Great Ormond Street is an incredible place and each time we’re there – usually 3 or 4 times a year – I feel incredibly humbled. We’ve only ever had overwhelmingly positive interactions with professors, consultants, doctors and nurses and knowing we are in the most advanced department in the country for children with her genetic condition is so overwhelming. We are so lucky that we have free access to such incredible minds and caring hearts.
But going back there takes me to a place of self-pity.
Day-to-day Elfie is totally normal. I know this because I do everything I can to make it so. I don’t ever want her thinking that she is different from her friends or that she is any less. I want her knowing she can achieve as much as anyone else can achieve.
But the reality is she has to take medicine four times a day to survive. I have to watch her for signs she is getting ill. I have to make sure her blood sugar is at a constant yet not over-feed her. I have to know that people looking after her are able to administer an injection in case of emergency, or if not that they know the exact wording to convey the seriousness of her condition to a medical professional. I have to live with the knowledge that her condition is so little research that the long-time effects of her medication are unknown but not taking them is not an option.
All of this stuff I can incorporate into my day just as I go to make a cup of tea… it’s routine, it’s normal, it’s nothing out of the ordinary. One and a half tablets of this one – bang. 2ml of that one – done. Nothing to see here.
Until we go to Great Ormond Street and I remember that she is a child that belongs here because she is a child that is ill. It’s a stab in the heart like she’s being diagnosed all over again.
On this trip, for the first time Elfie met a little boy with a similar condition to hers and she was so happy. She was fascinated that he took the same medication as her, down to the medical salt (sodium) she used to take as a baby. He was one and a half and a total cheeky rascal.
She was also a bloody superstar the whole way through. She was fascinated by the cannula on her arm and asked many a question about how it worked and where her blood was going. She didn’t murmur when it was going in but instead stared at the whole process, saying it tickled and wondering which vein it was in. She didn’t even complain when that cannula stopped working the next day and she had to have a second one inserted.
The most complaints were about the food – she didn’t like that one bit.
Elfie made friends with a little boy on the same ward as us whose colon didn’t work. They played together for hours and hours, lying on his bed watching CBeebies, thrashing each other on the Playstation and playing board games. I loved how much acceptance there was between them both – he didn’t question the blood that was constantly being drained from her and she only once kindly asked why he had a bag attached to his belly. Then they got back to the important business of eating crisps.
There was acceptance for me from the other mums, too. I have never felt I lack someone to discuss Elfie’s medical ‘stuff’ with but it was so cathartic to share stories and experiences, to have immediate recognition from someone who’d been there – done that. To share our hopes and worries for our children living with lifelong conditions. We stayed up late chatting like we were old friends and shared coffees the next day after not sleeping on the hot and noisy ward. It felt sisterly, it felt great.
We came home late yesterday and I felt like as I was getting on the train at Euston I was removing the ‘sick child’ label from my daughter’s head. Once back at the house I therapised myself by cooking a sausage casserole and Elfie did the same by arguing with her brother. Back to school this morning, a trip to IKEA for Hux and I and another therapeutic cleaning session for me (weird I know, but for situations where I feel out of control it helps put my mind in order). And then a cathartic blog post.
I’m not looking for pity because I don’t think we need it. We cope, we manage, I feel lucky. Today I feel sad but tomorrow I won’t be, life will go back to normal, I’ll catch Elfie applying one of my lipsticks and all thoughts of her being ill will be forgotten until the next time we’re at Great Ormond Street.
But this week I learned it’s important to not feel alone in tough parenting situations so I wanted to write this down for all my fellow poorly kid mums out there. Consider this our virtual cup of coffee on our hot noisy hospital ward. Just with nicer food, yeah?