Great Ormond Street Mums

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.

Great Ormond Street Mums

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.

Great Ormond Street Mums

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?

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  1. Kate wrote:

    My son has a genetic mutation which has meant numerous hospital stays totalling nearly four months of his short ten months of life so far. He’s not at GOSH but at the equally fantastic Evelina Children’s hospital down the road.

    I know all too well how you feel and reading your post brought it all back to me, clear as day.

    My son’s condition is similarly rare; they estimate that there are around 85 children worldwide that have it. We have the same issues with the medication; he has to have it but no one knows what effects that will have on him. It’s so hard.

    I just wanted you to know that I know how you feel and to thank you for acknowledging other mums like us, as so many people are so unaware of these conditions until they are directly affected. I’ve met some truly amazing parents with children with complex medical needs and am often in awe of how they cope.

    Take care x

    Posted 11.11.15 Reply
    • alice wrote:

      Lovely to hear from you Kate! Like your son Elfie is one of around 100 worldwide… we had better chances of winning the lottery, didn’t we?!
      Like you said, it’s incredible to meet other parents with complex medical needs. One thing I always note about GOSH when I’m there is how happy and upbeat all the parents are but I guess there’s no other way for us to be. I feel lucky that although we have these issues we can cope and we have a very happy life. Sending love to you x

      Posted 11.12.15 Reply
  2. Pen wrote:

    It all puts life and our other moans about limited sleep or a persistent sniffle in perspective really. Great that Elfie has such a positive attitude too. You have a right to be really proud of yourself and of Elfie.

    Posted 11.12.15 Reply
    • alice wrote:

      Thank you Pen! It really does put life into perspective. I lost a lot of friends in between health issues and divorce and it made me realise how little I want negativity or bad vibes in my life. Positivity is the only way to go! x

      Posted 11.12.15 Reply
  3. John @dadyougeek wrote:

    Alice this is such a great post, from a parent that is lucky not to have a child with a chronic health condition it appears that you are doing everything write (not that you need me to tell you that) and it is truly amazing how accepting kids are to hospitals and take it all in their stride!

    I am sure a lot of parents will be able to relate to your post and appreciate you sharing your short trip to GOSH! As for Elfie tell her to keep looking at that canula, I had to have loads of blood tests as a kid and grew up with an acceptance of needles and they honestly don’t hurt me at all as an adult!

    Posted 11.12.15 Reply
    • alice wrote:

      Thanks John – I hope so! I’m the opposite to you, I’m a total wimp when it comes to blood and can’t look at all ;)

      Posted 11.13.15 Reply
  4. Linda wrote:

    Nice post Alice but mixed feelings for me. I am devastated that since we moved our girls no longer get the profiles. I am fighting the best I can but feel like I am failing them terribly by not persuading our consultants of their immense value. I went to the parents’ meeting on Saturday (apologies if you were there and I missed you) and it has steeled my resolves to fight harder. But in the meantime I am so glad that many children like Elfie are getting the profiles and the data which makes their treatment work in the very best ways. Hopefully one day my girls will make it back to Kingfisher – maybe see you there :-)

    Posted 11.16.15 Reply
    • alice wrote:

      Oh I am so sorry to hear that Linda!! I didn’t know you’d moved. Can their care be re-located back to GOSH? We’ve only had the profiles for the last 2 years as we were under Nottingham before and they didn’t do them there either. I also think they are valuable, we had a change in meds because of it last year and blood sugar flags this year.

      I wasn’t there on Saturday, I only found out about the event the week before and couldn’t get childcare. Next time, I hope!

      Posted 11.16.15 Reply
  5. Linda wrote:

    Thanks Alice! Yes, we moved to Glasgow in the summer as it became clear we had more chance of meeting a yeti than affording a house in London… It feels like that there are two very distinct camps around the issue of profiles, as you will have experienced before. To me it just makes sense that every child should have one to make sure they are not under or over exposed – growth charts and blood spots seem wholly inadequate. I will carry on with my crusade but it’s so deeply frustrating and I am sure they are of the opinion that I am an overanxious parent who has a blooming cheek daring to question the methods of medical professionals. But I have to try.

    It was a good meeting, and a great excuse to come back to London for a few days. So hopefully we’ll do the same for the Spring one. Maybe see you there!

    Posted 11.16.15 Reply
  6. Muddling Along wrote:

    Great post – Littlest is one of c.200 GOS have treated over the last 20 years with his issues and whilst it makes him interesting it does mean that it’s so rare to find someone who understands

    Posted 11.16.15 Reply
  7. Amber wrote:

    My sister spent a long time at GOSH and consequently I spent quite a bit of my childhood hanging out there too! It’s a strange place, isn’t it – surprisingly full of positivity and magic and ENERGY for somewhere that is hosting some of the sickest children in the country. But also of course chock full of stress and anxiety as well. My sister enjoyed her time there quite a bit, but also had PTSD from the whole experience and until now I hadn’t really thought about how such a fun place with a children’s radio and visiting clowns and PETS and nurses who actually want to PLAY with you can also give an 8-year-old post traumatic stress disorder (it was the blood tests, for her. So many that all of her veins collapsed and she had to be pinned down, screaming, every day).

    Thank you for sharing your experience. It was interesting for me to read and it’s made me think and remember a bit.

    Posted 12.4.15 Reply
  8. Amelia jardine wrote:

    Hi, iv been looking through your post and I think my little boy is the cheeky little rascal
    You have mentioned in your post, we were in the bed next to you last year. His name is Thomas he’s has salt losing CAH. I found it so refreshing to meet Elfie and I often wonder how she’s doing.


    Posted 12.7.16 Reply