Mummy Loves Essie {Who Just Happens To Be A Disabled Baby}

Author: Lottie Manns

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.

Author: Lottie Manns
Cake baker (and cake eater!) extraordinaire. Drawn to all things girly and glittery.
Follow Lottie on instagram @buttercreamanddreams
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32 thoughts on “Mummy Loves Essie {Who Just Happens To Be A Disabled Baby}

  1. Oh wow, how much they’ve all grown! Really pleased you’ve got the support you needed to bring Essie home and to hear how strong you are fighting for what your family needs. I am totally in awe of how you’ve taken it all on – I can’t even imagine myself dealing with three babies at once. Hope you all have a lovely Christmas together and sending you lots of love xx

    1. Thanks lovely. It’s crazy where the time has gone and I cannot believe that this time last year I wasn’t a Mummy. Xx

  2. What a beautiful baby. You are doing such an amazing job. It’s NOT easy.
    My daughter has a disability and I totally agree I am happy when other children ask what’s wrong with her. I’d rather be open about it and have children understand from a young age that differences are out there and they are okay.
    I’m also delighted that this blog is covering this. I love reading it every – but I must admit sometimes the total bloody perfection of it all winds me up. It’s good to see a balance view that sometimes motherhood just doesn’t turn out the way we expected. Not a criticism just some of us are dealing with a different reality and it’s nice to see both recognised 🙂 x X

    1. Lovely message hun. Thank you so much and I’m glad that Essie can help educated others as you know life doesn’t always turn out how you planned. But that doesn’t mean that things are awful. Big hugs and fist pump to you xx

      1. Absolutely! We try as much as possible to have a fun, normal, family life and don’t let it get in our way very often 🙂 When people talk about the ‘new normal’ they are so right…….life can be a wee bit hard at times but its not awful…….my daughter makes me smile and laugh every day and she truly brings joy to everyone around her.

  3. Lorna, you are amazing, the strength you show is inspiring. I love your line of ‘life is precious and life is for living’
    I have to agree also with Nikki’s comments. It has put me off somewhat reading the Rock My Blogs as so often they are coming across a little too smug and ‘isn’t life all rose petals and processo’

    Motherhood certainly hasn’t been what I thought it was going to be and sometimes it is therapeutic to read that there are people are out there in similar circumstances.

    1. I think we all know life isn’t perfect especially for us first time mummies. It kind of smacks you around the face and you try to remember what life was like before. But actually there is no point as it won’t be that way again! Xxx

  4. ‘Be a tortoise.’ How lovely, I’m going to remember that and your beautiful little girl. Thank you for sharing.

    1. Thank you lovely. If I can help anyone in a small way by sharing our story then mission accomplished as far as I’m concerned xx

  5. Hi Lorna, obviously we don’t know each other but I just wanted to say what an amazing job you seem to be doing and thank you for sharing your story, you must be one tough lady (especially as you are somehow finding the time/strength to run the half marathon!). Good for you and I wish you and your babies all the best 🙂 x

    1. Thank you Hun. I firmly believe that you find the strength you need for your babies, no matter what. If that makes me a strong Mummy then so be it, but at the end of the day it is a love like no other that makes you fight for your babies xx

  6. I am so totally in awe of you and your family. You are an amazing woman. The support you organised for Essie is wonderful, thank God it worked out that well. Essie has the best parents she could have had, you are so loving, supportive and brave. I cannot believe how you are running 10k and more, that you are working again and caring for your triplets, it’s bloody amazing! I’ll be happy to make a donation since “just giving” never seemed more appropriate.

    On a completely different note: I don’t think RMF comes across as smug at all. I like that the authors are so honest and write about things like sleep deprivation, post-pregnancy body etc. But I also enjoy all the pretty they show. It gives me something to aspire to!

    1. Thanks lovely. I loved running before finding out I was pregnant with triplets and it helps clear my head to get back running again. Plus I’m hoping it will shift baby weight too!!! Always an ulterior motive. I love RMF too and guess it’s hard to find people with the “right stories” to tell to give different perspectives on things about pregnancy, family life and motherhood. Maybe that’s what Essie’s mantra of “being a tortoise” should mean – speaking out about your own experiences (no matter how hard that might be, so another person can get comfort and know they are not alone in whatever they might be going through. Xx

  7. Lovely Essie and family thank you for sharing your story. It sounds like a very all consuming time, and I am sure exhausting, but glad to hear you can still find a way to make the most of every day as a family. My son is technically disabled (not physically, he has Autistic Spectrum Disorder). He is a fabulous boy and we are very lucky with how well he copes, but it is intense and it is hard at times and occasionally (we are all human) we struggle that life hasn’t turned out ‘as expected’. Then at other times I look at other 4 year olds and am so glad I have my quirky fabulous one! It’s great to hear all the real stories of families of all shapes and sizes. Thank you for sharing. I’m off to “be a tortoise”. X

    1. Totally celebrate the uniqueness of your little man as he will teach you things that no one else can. It is bl**dy hard and there will be days when you wish for “normal” (whatever that is!), but those thoughts don’t last for too long. Enjoy being a tortoise! Xx

  8. That was so beautiful. No one should judge a little girl or boy. God made us all different for a reason! I’m so happy that Essie has changed your life. I’m sorry for what your going through! It would be tough but there is so much support. ( as you said ) I hope your little girl gets much better ! I know how hard it is as my cousin has a disability and can not move. But my Aunty and uncle have so much support that they are getting through it ! I follow you on Instagram and every time you post I smile, knowning that she’s loved and has all this attention. She’s a beautiful baby!
    God bless you & the family. Sending my love from Australia xxxxxx

  9. Thank you for continuing to share your story with us. You are doing an amazing job, as other readers have said, I’m in awe. Sending lots of love to your family ? X

  10. Hi Lorna, your piece really touched me, our son suffered a brian injury at birth too and is disabled as a result. He’s 4 months old and motherhood has not been the instagram glossed journey I thought but it has been full of love none the less. And I have to agree with others I’m really pleased RMF has covered this as I sometimes feel it can all be too perfect in the blog world. Thank you for sharing, you are doing an amazing job and i wish you and your gorgeous family a happy Christmas xxxx

    1. Your motherhood journey is whatever you make it honey. It isn’t perfect and I hope you and your little man get the help and support you need. If not shout and stamp your feet until you do as unfortunately it does seem that those who shout loudest get the support. Lots of love and if you need anything do get in touch. Xx

  11. Dear Lorna
    I am Christina Axton’s mother and she has told us all about Essie. We have every admiration for you and your family. Your story is a real inspiration. Love and hugs to you all.

    1. Thanks lovely. I’m so very lucky to have three amazing babies, who each keep me on my toes in different ways! Xx

  12. Wow – I’m struggling with a similar journey at the moment but we’re just at the beginning. If I could have a tiny amount of what comes through from you I’d be happy. All see,s bleak at e moment but maybe there is a tiny ray of light

    1. Oh honey. There is light and while you almost have to go through a grieving process for the child you thought you’d have, I promise you it gets easier. You will find a strength that you never knew you had, simply because you are a Mummy that is needed by your child in a way that no one else will ever be. Big hugs to you and if you need anything do get in touch. Xxx

  13. What a fabulous little family you have, Lorna. I have no doubt that beautiful Essie will teach her brother and sister so much. It must be incredibly difficult caring for all three of your little ones but I can just feel the love pouring out of your words.

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