A little while back we shared Lorna’s story of the arrival of her triplets. Those three little babies are the luckiest babies in the world to have a mummy as strong as Lorna is. You see, not only is Lorna looking after three little one’s but her beautiful baby, Essie, is a very poorly little girl. You can read all about their arrival and the heartbreaking news of Essie in Lorna’s last post. For now I will hand you over to Lorna so she can tell you all about the last few months and if you would like to continue to follow Lorna, Essie, Roman and Eva’s story then do follow ‘Mummy loves Essie‘ on Instagram.
Essie spent a lot of time in hospital when she was first born. 12 weeks in total. She has also spent a lot of time in hospital since she came home on 19 April, as my little lady is severely disabled (from a horrific brain injury at birth, as she’s a triplet) and is very vulnerable to any infection.
When Essie was in her second neonatal unit (as she got moved to a hospital out of London and nearer to our home at five weeks old) they had a sign above the bed that said “hello, my name is…”. Most parents didn’t fill the white sign in with the marker pen provided as their baby wasn’t going to be in hospital for weeks and weeks like Essie. But I filled the sign in and wrote “Hello, my name is Essie and I am a tortoise. I do things at my own pace and in my own way. But if there is something I don’t like, I will let you know. Love, Essie xxx”. This is how our special lady has continued to do things since she came home – in a tortoise like manner and will cry and scream whenever she doesn’t like something.
Being a Mummy to a disabled child is hard. Really hard. There is so much to get your head around medically about their condition as you are the person the doctors and nurses turn to for an update or simply to try and understand your baby. My husband and I joke that as Essie is a tortoise she likes people in green uniforms, which is why we’ve had to call an ambulance three times to our house since May. The first time I called 999 I was a wreck and passed the phone to Essie’s Community Children’s Nurse, who happened to be doing her weekly visit that morning. Now, whenever I call 999 or phone the hospital to say we’re coming in (as we have “passport” access to the hospital 24/7 as they expect us to be in a lot), I’m always now speaking in a calm manner and can talk medical jargon with the best of them. I never thought that would be something I’d be proud of, but I am, even when we nearly lost Essie in August to her first (of three, so far) bouts of pneumonia I was more calm than I thought I’d be. Don’t get me wrong I was a crying mess, but I was still able to think clearly and speak to doctors about what they were asking.
But that experience changed things, Essie has notably deteriorated since August and become more unpredictable (health wise) so any developmental progress before has now disappeared. We were getting to the point where Essie was just about reaching out to grab toys, but now we celebrate whatever successes the little lady has. Essie found her hands and brought them together which I was so happy about. She also has pretty good head control and can hold it up broadly unsupported as we walk around the house. It also feels at times that when I’m cuddling her (as she loves cuddles) that she reaches out to put her arms around my neck. The direct comparison between Essie and her brother and sister is getting more and more noticeable as they start to baby babble, crawl, eat solids, climb stairs etc. But you have to recognise the uniqueness and specialness of your disabled child and celebrate what they can do, no matter how small, rather than dwell on the many things they can’t do.
The support network Essie has to make her life (and ours) as easy as possible is pretty vast. She has: a paediatric consultant, a community children’s nurse, a carer that comes every evening to our house to help with bathtime and bedtime (Essie hates being naked due to her sensory imbalance, so bathtime is not really an enjoyable experience for me or Essie, as she screams and cries and often has a panic attack, then screams even more when you dry her and put cream on for her eczema), a child disability social worker, a physiotherapist, an occupational therapist (two of them, as you need a health one and a social services one where we live), a speech and language therapist (due to her unsafe swallow, which means she cannot feed anything orally so is fed solely via a nasal gastric tube), a dietician (she doesn’t move, so gained weight too quickly and needed to have her feed reduced and reduced to a mere 120ml five times a day) and respite care and support for us as a family provided by Chestnut Tree House (a children’s hospice, who are amazing – we ran a 10k for them in September and by way of a very small thank you raised over £1,600, go us!). In addition, Essie has also been to see an ophthalmologist to check what her eyesight is like (not too sure what she does/doesn’t have here as its difficult to tell in a baby before they are one year old), had an MRI (of her brain) and EEG (when you get lots of leads stuck to your head and look like a solitaire board) to try and better understand her severe epilepsy, been to a neurosurgeon to see if she needed an operation on a blockage in her brain (she doesn’t, thankfully) and also been to see a surgeon about getting her feeding tube moved to one that goes direct into the stomach via a “button” on your tummy. But Essie can’t have any operations at the moment as needs a high level of oxygen support 24/7 to help her breathe (since the August pneumonia episode), so we’ve been told that its very likely she wouldn’t survive the anaesthetic. That’s a chance we just don’t want to take at the moment.
There is an awful lot going on in Essie’s life – and because of this ours. But Essie is a triplet so we cannot let her and all of her requirements take over our lives. My husband and I are bringing up three 9 months old babies, it’s just that one of them happens to be severely disabled. We very much believe you take one day at a time and I’m very lucky that my husband is an amazing hands-on Daddy. I couldn’t do all ‘this’ (i.e. Essie) without him. Having a disabled baby doesn’t have to mean you never leave the house, it just takes a bit more effort and planning to get places but it’s possible and we try to get out as much as we can. We want Essie to experience as much as her siblings do and this is massively helped by us finally getting our Blue Badge. Although it is funny when we go out, as Essie suffers from hypothermia – as her brain injury means she can’t regulate her body temperature – so whether it’s 5 degrees or 35 degrees outside she’s wrapped up under several blankets and has a woolly hat on. We have also affectionately nicknamed Essie “Baby Compo” after the character in Last of the Summer Wine as she’s always in her woolly hat. The girl has a signature look and isn’t even one year old yet!
Has being a Mummy to a disabled baby changed me. I guess so. Being a Mummy has changed me, but that’s a cliché I think every Mummy would tell you. I do thank Essie everyday as believe she has made me a better person, as I am more patient than I used to be. Plus I am prepared to fight to get her what she needs and ask for help from anyone, as there is no point being proud and struggling when there is support out there to use.
Because of Essie I want people to realise that there is no stigma to being disabled and anyone who wants to understand what’s “wrong” with Essie and what it means should ask. It might sound odd, but I am happy to explain to people about Essie when we’re out and about and get asked. We are a bit of an attraction as it is given our huge buggy and then on top of this Essie has tubes over her face for oxygen and feeding. I would rather answer questions than hear people making their own comment or judgement. That is one of the things that makes being a Mummy of a disabled baby so hard, the comments made by a few and the stares. Don’t be afraid of Essie. She is a special little lady and I hope she can teach others all she has taught me.
Life is precious and life is for living. If I’ve learnt anything since having the triplets, it is that a house full of smiles, laughter and love can often be the best medicine. We frequently sit Essie just outside the playroom in her special chair (while we wait for her baby wheelchair to be custom made – and it’s arriving before Christmas!) so she can hear what her brother and sister are doing. We can’t leave them around her unsupervised at the moment as their excitement with exploring things in the world means Essie’s tubes have been pulled off her face a couple of times now (they crawl very fast at times) and this meant a trip to hospital the Sunday evening before I went back to work to have her nasal gastric tube put back in. Hospital visits never happen at convenient times!
My wish is for Essie to be with us for as long as possible so she can educate her brother and sister; and they appreciate the privilege of having a special sister like Essie.
Be like Essie, be a tortoise.
Lorna is running the Brighton Half Marathon in February to raise money for Essie’s Children’s Hospice if you would like to visit her Just Giving page.