Episode 26
Our Altered Life - Parenting A Child With Disabilities: CHARLIE BESWICK
This week's episode is a wonderful lesson in triumphing over adversity - a brave, beautiful and inspiring conversation for 'Blue Monday'. My guest is the incredible Charlie Beswick of facial disfigurement and visible difference charity 'More Than A Face'. Charlie is mum to twins Oliver and Harry - Harry was born with a rare craniofacial condition and is also autistic. Her experience led to her writing her best-selling book 'Our Altered Life', a brutally honest account of how she came to terms with a life she never expected and often resented.
UPDATE: This conversation was recorded in Spring 2022 - Charlie's beautiful wedding did go ahead on 24th April, with Harry playing 'You Are My Sunshine' on piano as she walked down the aisle.
*TRIGGER WARNING: *Birth Trauma, Feelings of Suicide, Negative Reactions to Disability*
IN THIS EPISODE WE DISCUSS:
[00:00] Teaser quote.
[01:47] Introduction to Charlie.
[03:20] Life before motherhood.
[04:43] Finding out she was having twins.
[08:12] The pregnancy - feeling good, followed by bed rest.
[09:52] The birth - waters breaking at 32 weeks.
[12:49] Meeting the boys.
[15:03] The shock of hearing Harry's diagnosis.
[19:16] Lack of support.
[20:48] Hiding behind a smile.
[23:40] The impact on her partner and her relationship.
[25:25] Coming out of hospital.
[26:50] Getting used to the ICU, feeling like a visitor rather than a mother.
[29:12] Bringing the boys home.
[32:32] Becoming aware that she needed help. Muscle memory of the shock.
[36:05] The relationship with Oli.
[39:05] The power of validation.
[39:41] Finally breaking down in front of her mum.
[41:07] Receiving Harry's diagnosis of Autism.
[45:40] Reaching rock bottom - planning to take her life. *TRIGGER WARNING*
[46:43] Recovery - medication and counselling.
[48:20] The need for self compassion.
[50:30] Charlie's work - charity 'More Than A Face' and helping mums accept their 'grief'.
[54:27] The affect on Oli of having a sibling with additional needs.
[58:07] The boys now, as teenagers.
[1:00:15] The happy ending.
[1:01:58] Charlie's book, charting her motherhood journey, 'Our Altered Life'.
[1:03:03] How to get hold of Charlie.
[1:03:33] Advice for when meeting a parent of a child with additional needs.
KEY TAKEAWAYS:
- Support for parents of multiples via the Twins Trust (formerly TAMBA)
- For more information about Harry's condition, Goldenhar syndrome, please click this link.
- For parents of children with Autism, charity 'Ambitious About Autism' have a Parent Toolkit which may be helpful to you.
- Listen to our special episodes on Self Compassion Part 1 and Self Compassion Part 2 with Poonam Dhuffer of YSM8.
- The 15 minute Loving Kindness Meditation will help you relax, reset and recharge any time you need it. You don't need to meditate - just close your eyes and listen to Poonam's words.
- Charlie's work supporting other mums via her website Our Altered Life.
- Charlie's charity More Than A Face was set up to raise awareness of facial disfigurement and promote understanding, acceptance and inclusion.
- You can order Charlie's book 'Our Altered Life: A Mother's Heartbreak and the Boys Who Saved Her' on this link (published under Charlene Beswick).
- You can read and download Chapter One for free here.
Early intervention is hugely important in terms of getting help. The earlier you seek support, the better in terms of your recovery.If you enjoyed this episode, please share, rate and subscribe. It really does make the difference in helping others find it – which means helping more parents in need.
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Email: bluemumdays@gmail.com
NEXT EPISODE:
Next week I speak to Amy Leigh Looper, a maternal leadership coach based in the United States. After a hugely successful career in enterprise software sales, Amy suffered postpartum depression with both her children. We discuss the impact this had on her life and how she has turned her drive and knowledge to coaching mums on her maternal leadership program, which reduces fear and anxiety and encourages connection, confidence and growth.
SUPPORT:
If you are struggling right now, please know that it’s okay to talk and reach out for help.
YOU ARE NOT ALONE AND WILL NOT FEEL THIS WAY FOR EVER.
We hope these support services are helpful (please note we do not check or monitor them individually).
*SPECIFIC TO THIS EPISODE:
The Katie Piper Foundation
www.katiepiperfoundation.org.uk
The Katie Piper Foundation helps individuals with burns and scars.
Changing Faces
www.changingfaces.org.uk
Changing Faces support anyone with disfigurements of the face, hands and body.
Helpline: 0300 0120 275 (lines open Monday – Friday 10am – 4pm)
Skin Camouflage: 0300 0120 276 (line open Monday – Friday 10am – 4pm)
Let’s Face It
www.lets-face-it.org.uk
Let’s Face It are a support network for anyone with facial disfigurement, as well as their families.
Saving Faces
www.savingfaces.co.uk
Support for anyone undergoing the treatment of Orofacial Cancers, trauma as well as other facial disfigurements, plus support for their families.
Contact a Family
www.cafamily.org.uk
Contact a Family offer support for all childhood conditions, are also able to put families in touch. Featuring a directory of conditions and rare disorders online.
Helpline: 0808 808 3555 (lines open Monday – Friday 9.30am – 5pm)
CLAPA – Cleft Lip and Palate Association
www.clapa.com
Information and support on cleft lip and palate treatment.
British Association of Skin Camouflage
www.skin-camouflage.net
Helping patients to increase confidence by the skilful application of skin camouflage.
Headlines
www.headlines.org.uk
Support to those affected by Craniosynostosis and associated conditions. Providing factual information and links to appropriate medical establishments experienced in treating these conditions. We also provide a friendly and confidential telephone helpline to all those affected.
About Face
www.omfsaboutface.co.uk
ABOUTFACE is a Patients’ and Carers’ support group. It has merged with a National Charity called Facial Surgery Research Foundation. It aims at helping present and future patients and carers to live through a difficult part of their lives as they are coping with the treatment of Orofacial Cancers, Trauma and other facial disfigurements.
The Healing Foundation
www.thehealingfoundation.org.uk
The Healing Foundation is a national fundraising charity championing the cause of people living with disfigurement and visible loss of function, by funding research into pioneering surgical and psychological healing techniques.
Facing the World
www.facingtheworld.net
Facing the World is a unique UK charity that exists to provide life-changing craniofacial surgery to some of the world’s most disadvantaged and vulnerable children from developing countries affected by severe facial disfigurements.
National Autistic Society
www.autism.org.uk
Support and advice for parents and carers of autistic children, including support to develop a greater understanding of their child’s needs and accessing services that meet the family's needs.
*GENERAL SUPPORT:
Action on Postpartum Psychosis (APP)
Moderated Forum, click here to find out more.
Email: app@app-network.org
Tel: 020 3322 9900
ADDA - the Attention Deficit Disorder Association
National Resource Center (NRC)/ADHD Helpline Health Information Specialists
866-200-8098, Monday-Friday, 1 p.m. — 5 p.m. ET
ADHD UK - peer support, created by people with ADHD for those with ADHD
The ADHD Foundation - the neurodiversity charity
Call us - 0151 541 9020
Email - info@adhdfoundation.org.uk
AIMS for better birthing.
Email: helpline@aims.org.uk
This email will go to a group of AIMS volunteers and someone will respond as soon as possible.
Telephone: +44 (0) 300 365 0663
You will be able to leave a voicemail message which will be sent to all our Helpline Volunteers. Please include your name, phone number and brief details of your enquiry. A Volunteer will try to call you back as soon as possible.
Andy's Man Club
A non-judgemental talking group for men
https://andysmanclub.co.uk/club-information/clubs/
Email: info@andysmanclub.co.uk
Association of Postnatal Illness
Helpline: 10am – 2pm – 0207 386 0868
Email: info@apni.org
Live chat online facility
Free NHS-accredited Baby Buddy app offering
evidence-based information and self-care tools to help parents during pregnancy
and early stages of parenting.
App users also have access to a confidential, text-based Crisis Messenger which provides
24/7 support for new and expectant parents who are feeling extremely anxious or overwhelmed.
email: info@bipolaruk.org
Email: support@birthtraumaassociation.org.uk
Contact CALM
on their national helpline: 0800 58 58 58 (5pm-midnight)
Email: lwise@talktalk.net (Liz Wise)
Mobile: 07773 283556
Contact: for families with disabled children
Support, advice and information for parents with disabled children.
- helpline: 0808 808 3555
- website: https://contact.org.uk/
Support dads to have successful relationships with their families, with mental health and accessing services through peer support and signposting.
kierananders@homestarthost.org.uk
0161 344 0669
Offers support and knowledge through a community of dads on practical parenting and fatherhood.
A digital safe space for fathers who wish to discuss their experiences of being black, a parent and masculinity in the modern world.
hello@dopeblack.org
Family Lives
An organisation providing immediate help from volunteer parent support workers 24 hours a day, 7 days a week.
- helpline: 0808 800 2222
- website: www.familylives.org.uk
Family Rights Group
Support for parents and other family members whose children are involved with or need social care services.
- helpline: 0808 801 0366
- website: www.frg.org.uk
https://www.reachingoutpmh.co.uk/
Run by Mark Williams, campaigner, speaker and writer, offering support to dads.
A grassroots organisation committed to changing Black women and birthing people’s maternal health outcomes in the UK.
Email: fivexmore@gmail.com
Gingerbread
Single parents, equal families. Help and advice on the issues that matter to lone parents.
- helpline: 0808 802 0925
- website: www.gingerbread.org.uk
A directory of mental health support around the UK.
Supporting LGBT+ women & people globally on the path to motherhood or parenthood.
Email: contact@lgbtmummies.com
Make Birth Better (Birth Trauma Support)
Email: hello@makebirthbetter.org
Peer support available, email info@maternalocd.org to
arrange
Supporting and empowering anyone who has experienced pregnancy loss to advocate for themselves.
Email: info@bigoutreach.org
0300 102 1596
Dedicated to sharing and supporting the black maternal experience through peer support, projects and advocacy.
Offering Trauma, Mindfulness and Meditation sessions for Mothers and Mums to be with an NHS Mental Health Specialist, who’s also a Mother.
motivationalmumsclub@gmail.com
Open conversations around fatherhood, including blogs, peer support and podcasts.
I had the boys at 6:30 AM and at 10:30 AM the paediatrician came to see Mark and myself. The midwife had come sooner than that, but Mark was out making the phone calls and she said, Oh, I'll come back." And I just knew something wasn't right. And so the paediatrician came back and he said, "Twin one"- who we'd called Oliver- "is fine." And at that point you just think "There's a but, I knew it. What's gone wrong?" And he said "Twin two, Harry, has been born with what we think is called Goldenhar syndrome. So for him, he's got no eye, no eye socket, no ear, no nostril, a short, underdeveloped jaw on his left hand side. We think he'll have brain damage, and it's unlikely that he'll ever walk." And I remember the doctor, I remember him drawing a line down the centre of his face and sweeping his hand to the left as if he was erasing everything there. And after that, most of what he said sounded like it was underwater. I just, my brain just couldn't really comprehend much other than that, I just, yeah, went into complete shock. Having a baby is meant to be the most joyful time of your life. But for many mums and dads it can be the hardest and at times the darkest of places. Welcome to Season 2 of Blue MumDays, the podcast for anyone struggling with parenting. All the stories shared here are from the heart. These are real conversations and may be triggering, so please listen with discretion. Today's episode covers feelings of suicide and birth trauma. We will also signpost you to help in the show notes. This episode was recorded during the spring of 2022. Charlie Beswick is mum to 16 year old twins, Oliver and Harry. Harry was born with a rare craniofacial condition and is also autistic. Charlie is the author of bestselling book, 'Our Altered Life'. It's a brutally honest account of how she came to terms with the life she never expected and often resented. She's also a mentor to other mums who find themselves with an altered life. In addition, she's an award-winning blogger and her family's story has featured internationally on Sky TV and in national press. Charlie is also the founder of the charity 'More Than a Face', where she educates young people on facial disfigurement and visible difference. Welcome to Blue MumDays Charlie, how are you today? I am good. I am delighted to be with you. Thank you. Thank you so much. I remember coming across your story on I think LinkedIn and just finding it so moving. I think you'd put a post out about the work you were doing with schools in terms of educating children around others with visible differences. And I just think it's something that is often taboo and children don't have filters sometimes in terms of what they, they see or their curiosity about somebody. And I think it's incredible work you are doing to educate them on, you know, speaking to people with sensitivity and also understanding disabilities and disfigurements and related issues. So it's an absolute honor to have you on today. Thank you for joining us. Thank you very much for inviting me. I was just thinking, first of all, if we could just talk a little bit about what your life was like before you had your twins and, and what you were like as a person? Sure I was a perfectionist. Very driven, very focused. Yeah, I got a first class degree, as a mature student, if you can call 21 mature! I did Oh, wow! , CHARLIE BESWICK: I'm not quite sure But technically I was! So yeah, I've always applied myself really well, given the very best of, of who I am. One of my mantras is to sort of make the people that I love proud of me. That's a little bit of a hangover from a childhood where I strived to make people happy, um, and proud, during a particular sort of challenge of growing up with, um, difficult parenting and things like that. So that's a legacy that I live with. So striving to be the very best, to do the very best and to make people around me really proud. I wanted to be a teacher or involved in child development in some capacity, so I did a psychology degree and as I say, was super, super focused on making a difference. That was always the plan for me. So you've always had sort of purpose at the core of what you do? Yes, definitely, definitely. And that purpose has, it's shifted- it, you know, manifests in a different way now- but it's still very much around making a difference. So when you found out you were pregnant, did you know immediately that you were expecting twins? No! I was about five weeks pregnant, so it was very early and had quite a lot of hip pain. And so the doctor sent me for an early scan in case it was an ectopic pregnancy. And the sonographer, if that's the right word, I'm not sure! She said "It looks like there could be two, but I'm not sure." And so I told my partner at the time and he just said, "Oh, no way. It will just be a fluke, it won't be twins". And so I went back two weeks later and clear as day, we've got two little sacks, two thumping heartbeats. And I rang him from outside the hospital and I just said, "They're waving!" And he said, "Oh brilliant. What they? Wait, what?!" So yeah seven weeks -ridiculously early to be finding out that we were having twins. But it just meant the excitement started a bit sooner for us. Did you have like twins in the family? Was there a family history? So my nan's mum, was one of twins, I think, along that side. But nothing that made us question that we'd be next, certainly. And my boys are non-identical, so that is because I released two eggs. So that is the hereditary part of twins. Anybody can have identical twins, which I didn't realise before I had my boys. So yes, it's in the genes somewhere, but we didn't expect it. It was a total surprise. And what was your emotion when you found out? Because for some people it's an absolute delight, you know, 'instant family'. For other people I can imagine it's very overwhelming. Yeah I burst into tears once we found out. Just the whole processing of twice the expense, twice the sleep deprivation, twice the feeding, just the logistics I think. But once we got our heads around that and it didn't take long, we were super, super excited and everybody that I told just said, "Well, if anybody's gonna have twins, it's going to be you. You don't do jobs by halves. You know, this has got, you written all over it!" So it became quite the joke that of any of my friends or colleagues, it would be me to have twins. Yeah. Yeah. That's a pressure in itself though, isn't it? Yes. No, it definitely is. And I will say one of the things I found really strange about having twins is the amount of people that asked me if it was IVF or natural conception. And I remember saying to somebody, um, a receptionist- she probably got the brunt of this because it was like the 20th time I'd been asked- and I said, "Do I ask you if you pay your car outright or if you need finance?" Said, "it's nothing to do with me. Why is my fertility such an issue?" And I just found it quite invasive that people felt that they could ask such a personal question. So that really opened my eyes to the kind of comments and mindset around twins, I think. Yeah, I've not had multiple births, but I can imagine that it's something that- you know, for any mums listening out there that have been through multiple births and pregnancies- that that. really resonates, because it's something that you don't even think about, you know, people making comments like that. And I was having a chat with somebody the other day for another episode, and we were just talking about how when you're pregnant, it's almost like you become public property and people touch your body or make comments about your body shape. You know, "the bump's too big, the bump's too small, ooh aren't you" this, that or the other. And actually, that's quite a lot for the mum to take in when your hormones are raging anyway. Absolutely. H ow did you find your pregnancy? Great. It was a really healthy pregnancy. I had a scare around 10 weeks, had a little bleed. But we were reassured everything was fine. I had no strange cravings other than cereal and milk - I remember just wanting to drink copious amounts of milk and yeah, it was a really great pregnancy actually. I felt amazing. I felt really healthy, really took care of myself. And about 28 weeks into the pregnancy I started to lose fluid around one of the babies. So I was put on bedrest in hospital. That was a bit of a scary period of time because I'm based in Stoke-on-Trent in Staffordshire, and the closest bed, closest hospital that could take both of us was Edinburgh! Oh my God! Yeah, so my mum came to the hospital and I was crying just saying that "they might be sending us to Scotland!" There was nowhere that could take 28 week old twins any closer than Scotland. So that was, again, you know, something that you just don't realise until you're in that position. Yeah. That neonatals are so, you know, resources are so tight. Um, but yeah, so that was a little bit scary. But other than that, a perfectly healthy, fine, great pregnancy. I was scanned often, reassured everything was fine. So yeah, it was great. 'Ignorance is bliss' as they say. How long were you on bedrest for? That must've been tough. Only for about four days. Um, we caught the fluid leaking very early, so it was complete bedrest. I couldn't even get up to go to the loo. And then things just settled down on their own, uh, until my waters broke when I was 32 weeks. 32 weeks. Wow, that's early. Yes. So are you happy to talk about the circumstances? So what happened then? So my waters broke on the Wednesday evening. Um, I rang the hospital and they said, "Do you think you might have just wet yourself?" Nice. Yeah, lovely! "I'm really not in the habit of wetting myself, like I do think my waters have gone". Uh, so I went in slow labour, had some pethadine for pain relief, in the middle of the night and I was dilating naturally. Got to about seven centimeters and midwife was saying, you know, "everything's moving along slowly, but okay." And then they sort of were having a little rummage and they said, "oh, it's not a head it's a bum, we need to get you into theatre immediately." So this was six o'clock on the Thursday morning and they rang my partner, my fiance at the time, and said "she's, having these babies in about 30 minutes, you need to get here". Bear in mind, we lived about 40 minutes away from the hospital! Oh my goodness. They were literally like, well, I rang him at first and I said, you know, "the babies are coming". And then they took the phone off me. They said, "you are far too relaxed. You know, you need to get here- don't break the land speed record, but you need to get here!" Yeah. Crack on. So he literally ran down the corridor as I was wheeled into theatre. So it was, there were seconds that he got there in time. But he was there? Fantastic. And how were you feeling, because obviously you weren't ready for the birth to happen that early? No, I wasn't. Um, I think a couple of things really. I was excited because I felt that I'd been pregnant for as long as an elephant. We'd found out so early. It didn't really, if I'm in all honesty, dawn on me that the babies were going to be two months early. It was just the case of "I feel like I've been pregnant for 12 months, let alone seven". And so I was just so excited to meet them. And the other thing that I remember - this was before the days of Facebook- and I was on a website called TAMBA, which was the Twins and Multiple Birth Association. It's now called The Twin Trust. And there was an online forum and I just logged on and said, "Girls, the waters have gone. I will see you on the other side". And I always remember that that was how I signed off my forum. And after the events of having the boys, I remember thinking, 'wow, that was a different person that wrote that". Hmm. Yeah. It is incredible, isn't it? It's something we talk about a lot on the podcast about how, as soon as you have your baby, whatever happens, you have changed incredibly and nothing can prepare you for that moment. You can do all the right things. And it sounded like throughout the pregnancy you were, you know, really preparing as much as you could and in control. But then when it happens, it's kind of taken out of your hands. And, um, so are you, are you happy to talk about the birth and what happened? So you were rushed into theatre - CHARLIE BESWICK: Yes. Um, emergency caesarean section. We were told, we've got boys. We didn't know the gender of the babies, so we were told there were two boys and they were both whisked away to special care, which we expected because we knew there were going to be small birth weight. They were premature anyway, so that didn't come as any shock to us at the time. I remember sort of waiting to hear them cry, as all mums do, waiting for that anxious moment that feels like it just takes forever to hear the baby's crying. And then they were whisked away. My fiance, he remembers seeing them cover Harry's face in half, sort of with half of the you know, the sort of towelling, the wrapping that they have. But he thought nothing of it again, he just thought it was just a position and the rush and so they were sent off to special care. I was returned to the ward. I'd been awake since six o'clock Wednesday evening. So I've been awake all through the evening. So I was exhausted, slept and snored apparently really badly, which is sexy! And meanwhile, Mark had gone and rang everybody. And told them that we'd got two perfectly healthy boys. I was okay, recovering well, and yeah, just delivered the amazing news that the two of us had become a four. We'd got two boys and everything was great! Did you have skin to skin contact with them or were they literally just whisked off? Whisked away. Didn't see them, didn't nothing. Nothing at all. That, that's the trauma in itself for for you? Yeah. It was, it was, and I woke up and actually I remember, I don't even know how long ago it was. And, and I don't know, I think this is quite common with C-sections, but I remember lying in the ward and feeling wind in my stomach and thinking, "this is like the babies kicking." It's like my body's punishing me and tricking me. And just my body almost craving these little people again and not being able to be anywhere near them because they were covered in wires. Um, and Harry, we'll, we'll come to that in a second, but he actually went to Manchester after the boys were born. So I didn't see him for six, for six days, let alone skin to skin contact. I didn't, Yeah, so you've got premature twins, you know, low birth weight anyway, and then he went away for six days. And so when did you learn about your boys? When did you see them? So I had the boys at 6:30 AM and at 10:30 AM the paediatrician came to see Mark and myself. The midwife had come sooner than that, but Mark was out making the phone calls and she said, "Oh, I'll come back." And I just knew something wasn't right. And so the paediatrician came back and he said, "Twin one", who we'd called Oliver, "is fine." And at that point you just think "There's a but, I knew it. What's gone wrong?" And he said "Twin two, Harry, has been born with what we think is called Goldenhar syndrome. So for him, he's got no eye, no eye socket, no ear, no nostril, a short, underdeveloped jaw on his left hand side. We think he'll have brain damage, and it's unlikely that he'll ever walk." Wow. Bam. Yeah, literally. And I remember the doctor -who we were in touch with for about another 12 years, and I adored him- I remember him drawing a line down the centre of his face and sweeping his hand to the left as if he was erasing everything there. And after that, most of what he said sounded like it was underwater. I just, my brain just couldn't really comprehend much other than that, I just, yeah. Went into complete shock. I'm not surprised, you know, lack of sleep, you've been through the trauma of the C-section and so much to take in, in just one fell swoop. Was your partner with you at the time? Yeah, he was at my side. And I remember looking at him thinking, this isn't right. Is there a mistake? Is there a, just really in that denial phase of, of the grief cycle, I think. And he says- and I don't remember this- he said that "You just looked at me. You just kept saying, I'm so sorry. I'm so sorry." And he said "You were crying but not sobbing." Just the kind of where the tears just fall down your face. There's no gut wrenching emotion behind it. It was just, he just said, "You kept saying, I'm sorry, I'm sorry, I'm sorry. And he said "You know, you don't have to be sorry. You don't have to be sorry." And I don't really remember that. Um, but that was my first reaction was to apologise. Oh my goodness. So then what? What happened next? So then Mark went out and rang everybody back again and told them the news. My mum came straight to us, and I remember he put her on the phone and I just said, "Something's wrong, mum." And that's all I could say. And then Mark spoke to her and my mum says, "At that time I remember thinking, she's my baby. I need to get to her regardless of what's happening with her babies, she's mine and I need to know she's okay." And so they came and said, "Do you want to meet the boys?" so it was one o'clock the next morning because the boys were born in Macclesfield which is in Cheshire, but they didn't have the capacity to look after Harry because he needed so many scans and investigation. So he was sent to Hope Hospital in Manchester. And so they wheeled me to him and I put my finger through the incubator that he was in, and he just put his little fingers around mine but his head was turned, so his head was facing the opposite way. So I just saw the back of his head and he just grabbed my little finger. And then he went in up by ambulance and Mark went with him, um, up to Hope. And I didn't see Oliver at that point. Um, I think I saw Oliver probably the day afterwards -it's all a bit of a blur. But again, he was just behind CPAP and wires and monitors and things that were beeping. And, you know, he just looked like a tiny little bomb that I couldn't touch or go anywhere near, let alone hold. And yeah, it was, it was really, really tough. Really hard. And how, what was their birth weight? Three pound nine So tiny, tiny. Yeah. They looked like little old men that hadn't grown into their skin, you know, they were still a bit wrinkly. And I look back at photographs now and just see that they looked great considering everything. But at the time, particularly with Harry, I really struggled to see anything other than my failure. And what support did you have around you? Obviously your partner had to go off with Harry and you had your mum there, but what sort of psychological support were you given? Nothing. None. Nobody came to me. Nobody asked questions. I remember the midwife- and I've actually tried to find her on Facebook since this, Rachel- she came and sat on the end of the bed, about the weekend after. So I had the boys on a Thursday, so it would've been the Monday. And she said, "I've had an awful weekend." And I said, "Why"? And she said, "Because I just, I was so sad and cross that this has happened to you, and I just felt that it was really wrong and unfair and I just, it spoiled my weekend because I just felt so mad for you." And it was joyous to hear. It was so lovely to hear somebody say this to me, because in the 48 hours since the boys were born, all I'd heard was, "You are strong enough to do this. If anybody can do this, it's you. You've got this, we believe in you, you can do this!" And it all came from such a lovely place of belief and people really wanting their belief in me to, you know, sort of infuse into me, but it set a really high bar. It set a really high standard for me to live up to, and in that moment, Rachel just saying, "You know, this is just crap." It was so lovely to go "Yeah, it is. It really is." And I needed more of that. It was a 10 minute conversation that meant such a lot to me, and I needed more of that. And I didn't allow myself that. I, I hid behind a smile and I now call that 'the lie we wear' - just this smile that we paint on that says, "Yeah, I'm fine. I'm okay. Yes, of course I can handle this." When all the time you're doubting yourself and imploding. It's that sort of huge weight of expectation, isn't it? And as you say, those comments were coming from the right place. You know, people wanting to help and support, but actually words like that can be really damaging. Absolutely. And now when mums contact me -and they reach out to me quite often- the first thing I do is validate everything that they're feeling and say- I'm a bit of a swearer so apologies- but I will say, "This is shit. It is." And they're like, "Thank you so much. Nobody else is saying this to me." Um, and I think the quicker we have those conversations, the quicker we can move through and forwards. Um, I didn't have that conversation for a long time and it was to my mental health detriment really, that I didn't voice that, that I pretended for as long as I did. So for anybody who's listening, whose friend perhaps, is going through an experience - obviously everybody's experience is different- but a traumatic experience like that, or, you know, perhaps something is wrong with their baby or one of their babies, what advice could you give them in terms of helping and supporting? I think it's a fine line between being positive and optimistic and downplaying the emotions that the mum goes through. And a lot of the time it's guilt and grief and shock. So I think it would be something, what I needed to hear was, "You know, if anybody can do this, you can. But right now, this is crap and I am here for you. And if you need to come and moan and whinge and cry and stamp your feet and, you know, just swear, I'm somebody that will listen to that." And I just think I needed that and that would've made all the difference to me, I think. So a safe space where it's okay not to be okay. And not to be judged, because already I felt that I'd failed my children. Already, I felt like a bad mum. I was like, "what sort of mum creates half a baby?" So how can I ever admit that I blame myself or that I'm not happy for this, or that I don't want this child, or that I'm worried that I can't look at him, let alone love him? Or how can I admit that when I've already failed him so massively? And so those are the thought processes going through my mind. So I just needed somebody to give me that space of non-judgment and just "Get it all off your chest. And it's a safe place with me." And that's what I offer to mums now who don't have that. Amazing. And what we'll do is we'll signpost people to how to get hold of you, at the end of the show. What about your partner? How did he cope and what was the communication between the both of you? So he knew that I was struggling. He didn't want to get upset and create any more pressure for me to be the strong one for him. And so he slipped into I guess ' man of the house' mode, you know? Kind of doing all the logistics, ticking things over. He still had to work after a few days. So he would go to work and then he'd come to Macclesfield, to us, which was 40 miles from where he works. Then he'd drive another 40 miles up to Hope. Then he'd come back to see me and Oliver in hospital still. And so he was exhausted. He says that he cried once in the car on his own. That's all he did. Uh, and he just powered through. He just went into keep busy' mode, I think. And we never talked, we never spoke about what we were going through individually. We never cried together. Um, which looking back is really strange cause I'm so open, I wear my heart on my sleeve so much. But I think we both went into self-protection mode. I didn't want to cry because I was convinced he blamed me anyway. So I thought I can't let him down. I've got to be strong now, make up for this child that I've given him and he didn't want to get upset and, and make me feel worse. So we were just ships that passed really. We got married when the boys were one years old, uh, just the week before their birthday actually. And then we separated when they were four and a half. And had we spoken to each other, I don't know if the outcome would've been different, but now I know when I'm talking to mums that communication is key. We didn't, we just didn't. When did you come out of hospital then? And presumably was that just with Oliver? So I was in hospital for just over a week and I came home alone, and then the boys came out when they were seven weeks old. Just trying to think about the maths now. Harry joined Oliver when they were eight days old in Macclesfield, and then they stayed there until they were just, I think six, seven weeks. And we brought them home at that point. So what was life like for you? Were you literally just going back and forth all the time? Yeah. And I couldn't drive because I'd had the caesarean section, so was really relying on the goodwill of other people. And that was so hard because they wanted to question me, "do you know what's caused this? And how are you feeling? And I'm sure he is still beautiful." And I didn't want to talk to people, I just wanted to get to my boys and just be with my boys and then be at home on my own. And so I had to have this conversation, a day like Groundhog Day, day in, day out. And I remember taking people to see Harry and they'd cry and I'd comfort them, you know, and I'd almost have to say, you know, "It's fine!" and reassure them that things were gonna be okay. And it was just exhausting. It was awful. Again, you know, it came from a really well-meaning place, people were lovely. People rallied around to give me lifts there and, you know, and Mark would bring me home, but to drop me off. But it was hard. It was exhausting. And how did you feel when you were with the boys? Because as you say, there's all the barriers of the intensive care unit, the wires... Yeah. It was strange- I think in no time at all you do get used to it . And you get used to sort of what all the alarms mean and reading all the, the stats of the babies. And then you see new parents come in two weeks later and you feel like a veteran and you can see them jumping at everything in the same way that you did. But yeah, so that was a journey in itself. That was a process. You know, you, you'd hear alarms going off and you'd think, "Is this it? Are we losing them? What does this mean?" So you kind of lived on your nerves and that whole adrenaline rush. But then I'd be ringing Mark saying "They've taken 5ml down a gravity feed. Like it's amazing!" And I was expressing milk, ridiculously. I went into- as I do- all or nothing kind of powerhouse mode. And I remember the nurse in special care saying, "We could feed every baby with the milk you are providing. You need to slow down." Wow. And I got mastitis because I just wouldn't stop. So yeah, it was intense for me as an individual, as a person. And for me as this new mum that was getting to know these two very different babies. And actually when I've looked back in time, I think one of the saddest things for me is that I completely missed the fact that I'd got one healthy baby with Oliver. Harry's problems, completely eclipsed the whole process. Having my boys was the worst day of my life. And I hate saying that and I don't think any mother should say that, but it was. It was the most traumatic day of my life and that completely eclipsed the fact that I'd got one perfectly healthy baby. So yeah, it was a slow process of getting to know their personalities. I remember coming in one morning and one of the nurses that had been on night duty saying that one, Oliver, always wants to be fed, and that one just wants cuddles. And to this day, that's what they're like. You know, it was really bizarre! Four weeks old, and to this day, it's exactly like that now! But there was this weird feeling that other people know my babies more than me, better than me. You know, they understand my own children and I don't. So it was really alien, you know? I didn't feel like a mum. I felt like a visitor to these little people that were being cared for by the nurses. That's incredibly hard. So when you finally got them home, how did that feel? 'Cause again, another massive process of adjustment? Yeah, really scary because up until that point we'd had experts on hand 24- 7. So Harry came home with an apnea alarm, in case he stopped breathing in his sleep. He was bringing his milk back down his nostril because we weren't quite sure if his pallet had formed properly. So Mark and I had to check on him every 20 minutes. And that was 24 hours a day, so we took three hours shifts in sleeping so that we could just keep checking on him through the night. And he got this apnea alarm. So we just, again, lived on adrenaline, and tried to feed these- they were only ...Oliver was five pound one, harry was four pounds 12 when they came out- so they were still teeny tiny babies in micro nappies. You know, newborn nappies just drops off them, so they were in micro nappies. So yeah, it was really hard, and it was scary. I was 26, I was a young- you know, obviously not, not terribly young mum, but I was 26 and it was a lot for me to take on. Mark went back to work quite quickly, and so I was on my own with them and my nan and my mum were phenomenal. They were brilliant help. So thank goodness you had them sort of around you, but again it sounds like a lack of support. Nothing. And in fact, we had the first health visitor that came out to see us came and sat in the lounge. Think the boys were - the boys might not have even been home at that point, or if they were, it was very recent. And she said, "So I understand that your son's got some golden something or other. Do you think it was something you did?" No! And I just looked at her and said, "Yes, I do think it was something I did." And I remember her walking, leaving the house quite, I was quite abrupt with her. And I rang the service and I said, "Don't ever send that woman to my house again." Um, not surprised. And just the sheer lack of common sense and kindness, in a role that requires those things as standard, . Was astounding to me. So and I have done work with people- students who are training in those fields- and use that as an example of how really not to interact with new mums. Yeah, it was awful. Oh my goodness. I... it's just breaking my heart, listening to all of this, you know, and everything that you've been through. So can you explain a little bit more about Harry's condition? Because obviously with the apnea, was it? That must have been, my God- as any parent, you worry about your newborn baby, not breathing. But to actually have that as a possibility... that's torture. Yeah. And the alarm going off and then you jump up and you think, "this is it, he's dead." And you get there and he's just rolled over and unplugged the wire from his stomach and you just think, "oh my goodness!" You know, you don't know whether you are relieved or annoyed or you, you just have all these emotions on top of hormones, on, on top of sleep deprivation. It was a melting pot. It was a disaster waiting to happen in many ways. And then a complete lack of support for me. So yeah, it was difficult. So when did you become aware that something was going on with you? When the boys turned one. So I knew before then, I remember my mum visiting and I was laying on the sofa and I just whispered to her, "I feel like I've got half a baby." And she just said, "You haven't, yeah, you, you know, he's a beautiful boy." And I just couldn't properly connect with him. Nothing to do with him. Like if you look at photographs of him now, seriously, such a beautiful baby. He's got my eyes eye, he's got my eye. Um, and it's a really big round, beautiful blue twinkly eye and this really mischievous smile. Gorgeous baby. I couldn't see any of that. I looked to him, I saw failure. I just saw an inadequacy to be a mother and a decent human being. And for those reasons, I struggled to bond with Harry for my own reasons, nothing to do with him as a baby. And so when the boys were one, I remember it was almost like my body knew when it was 10:30. And I think it was possibly a little bit of PTSD from, from having the news and, and it, I just had this feeling like somebody had just walked over my grave and I relived every single second of that news. And that actually went on for five years. Oh my goodness. Because at 10:30 was when you were...? When they told me. So I'd know at 6:30 that, you know you know, I'd say to the boys. "Your birthday is when you were born, half past six, you came into the world, happy birthday!" But yet it was just like muscle memory. And I was teaching one year and I remember just wanting to be sick and looking at the clock and it was 10:30. My body knew I, I didn't even, maybe I, maybe I was aware of it in the background, I'm sure I was. But yeah, it was just like muscle memory. My body just would go into shock, in that moment of reliving it all over again. It was really tough. And so there was a few things that were going on with my mental health. I was training to be a teacher when the boys were born, so I'd got that pressure. And so I was trying to give everything to my teaching qualification and be really strong and be really in control and be really, you know, articulate with my studies. And so that left very little to be a mum, at all. And then I was trying to be everything to the boys and trying to learn about Harry's syndrome. And we were doing occupational therapy, had to have physio so that the left hand side of his neck didn't perish. We had to do all these tiny little things, black and white photographs and images so that we could stimulate his vision. It wasn't just feeding him, you know, we had to do vision therapies, hearing therapies, physiotherapy with him as well. Um, so I was trying to give everything there and I just was burning the candle at both ends and a little bit in the middle. But that's how I coped- be busy, be effective, where you can, "make people proud because you've got a lot to make up for girl. And don't be a wimp and sit and feel sorry for yourself. You haven't got time for that. You need to crack on." So my internal dialogue was pretty relentless and quite harsh, I would say. Like I would never speak to anybody in the way that I spoke to myself in those moments. So, so many of us do, you know! We've got two episodes devoted to Self Compassion and how you need to talk to yourself with kindness. But my goodness, you really beat yourself up, didn't you? Yeah. Awful. Yeah, I was nasty to myself. Sorry - I'm just so moved by everything you're saying, so apologies- it's very unprofessional, blubbing away! And you talked about the bonding issue with Harry. What was your relationship like with Ollie? I mean, did you even have time to develop one because of all the extra stuff you had to do for Harry? I think for me it was very functional with both boys. It was very functional, certainly the first 12 months. But as I got to know their little personalities ... I would say past sort of seven months, once we got onto the weaning of food stage and we were able to have a little bit of communication and I saw them as little people in their own right, that helped me a lot. Up until that point, it was very much all on me. And I did really struggle. But I remember when the boys must've been about 13 and I apologised to Mark and said that I felt that I'd been a weak and an absent mum, mentally. And he said "You were a brilliant mom. You were such a good mum to them when they were little. You just don't see it. You don't remember it." My boys we're very, very close. Harry's a real mummy's boy -actually so is Oliver! We are super, super close as a unit, and so I don't think that would've happened if I'd have been the mum that I imagine I was. But I was just very conscious that in those formative years I was dealing with so much on my own that I kind of just beat myself up a lot thinking "Well, how could they have developed normally, typically- if you like- with a mum that was absent mentally?" But kids are resilient and they did. And yeah, I fought their corner. I did all of the things that I needed to do for both of them. Um, and we've got an amazing relationship for that. Not, you know, because of that, I think not in spite of it. I fought for myself. I fought for me to love them. And in doing so, I think that And because of everything that you did and all those efforts and you are saying that you were mentally absent, but everything you're saying to me sounds like you were absolutely there, but you had so much to deal with. Everything that you did for your boys, especially with Harry, with all the, the physio and the feeding and everything's there to care for him. So you were, you were doing all the right things. I remember the physiotherapist coming and seeing us and she said as she was walking out the door, she said to me, "He's so lucky to have you." And I said, "What do you mean?" And she said, "I see so many babies with the mums that don't know where to start and don't want to, for whatever reason." She wasn't being judgmental. She just said, "He's so lucky. He's got you doing all this And that was really... it surprised me. It really surprised me and I thought, "Wow, okay. There are mums out there struggling more than me and I'm doing a good job. Am I?" You know, the fact that she didn't need to say that. She wasn't my mum, she wasn't Mark, she wasn't just doing it to keep me happy. And it was those sorts of people that validated me as a mum I think, and really helped. Were you able to take that in at the time, or did you not believe her? and no, I questioned it, certainly I questioned it, but it's something I kept coming back to. I kept coming back to it and when I kept thinking I'm doing a really rubbish job, I'd think "No, no- other people that don't have to say I'm doing a good job, have seen that I am." And so yeah, she will never understand how powerful those words were to me, and the difference they made. Yeah. So if there's anybody out there listening who works in supporting Mums, that's it. You never know what a difference your words can make. Absolutely. Yeah, completely. What about your family and friends? Were they noticing the changes in you? In the beginning it was only mum that saw that, because she was the one that would come to me. And I remember she came to pick me up one morning to take me to hospital and she walked into the kitchen where I was standing and she could see that I was about to cry. And then she put her arms around me and my legs completely gave way. And I just howled. It wasn't even a cry, it was just a howl. And it almost came from the pit of my stomach kind of noise. So she saw all of that when other people saw the smile and the "I'm okay, yes, of course I'm coping!" As the boys got older, so when they were sort of five or six and I got closer to a depressive episode and not a full breakdown, but close enough. The partner teacher that I was with, she knew because she could tell from my mood, I was getting quite manic. So some days I would go in and I would literally be literally bouncing, you know, singing like somebody that had just had four Red Bulls for breakfast, you know? And then other days I would go in and shut the door behind me and it would be a cue- "Don't come in. I'm not ready to talk to you." And so she saw that very extreme change in me. Because I would go to bed not knowing how I was going to wake up in the morning. And so that really was a telling sign for me. But the boys were a lot older by that time, and Mark and I had separated. I was a single parent by the time that was happening. And Harry had obviously been diagnosed with autism because that happened when he was two and a half. So on top of the Goldenhar- and lots of children that have Goldenhar syndrome, cognitively are unaffected by the syndrome. They, you know, live completely typical, um, cognition lives. But autism runs in my family and I believe that it's genetic. I don't believe it's caused by vaccines. That's a whole different conversation. But again, that, that's genetic. So I felt that I'd passed that on to him. And so we'd got the autism to deal with as well. So when you got that diagnosis, that must have been another big shock for you. Yeah, it was, it was another blow. Mark and I went to the assessment in different cars and I remember I got into the car and I cried and punched the steering wheel. And then I drove home and that was it. That we didn't get upset about it. Again. It was just very much "Right, how do we move forwards? How do we move forward from this?" And I think there's a place for that, I really do. But I don't think you can do that. It's like building a house on sand. Unless you address those real base emotions, anything else just isn't productive. What was your understanding of autism? Because if we are looking back, so this would've been about 14 years ago? There was such ignorance and lack of information and understanding even amongst the medical profession about the autism spectrum. Absolutely. What did that mean to you and what were your fears? Oh, so this is an awful thing to admit, but it is how, you know, life was in the early nineties. As a 11, 12, 13 year old with my mates walking home from school, we'd see a special needs bus go past and people would be saying, "There are the 'biscuit spitters', there are the 'window lickers'. You'd be calling them all these names as if they were a separate entity- you know, sort of aliens, separate to the world. So I kind of just, it was just fear. It was just, "Oh my days. Is that what he's got for his life? Is he going to be 'retarded'?" A word again that we don't use now that we would've used then. " Will he speak? Will he know me? Is he going to be some sort of vegetable that I have to care for forever? Is he gonna have any sort of quality of life? Is Oliver gonna have any sort of sibling relationship? Am I gonna be a carer forever?" I might have said that one already, but you, you know, just kind of all of these things that go around in your brain, like a washing machine. And just that whole unknown uncertainty. "Will he ever speak? Will he ever be out of nappies?" It was just fear. So, so much fear and so much unknown. Um, and as it is, you know, he's made incredible progress and hindsight's a wonderful thing. You know, if I knew then what I know now, I'd have coped absolutely fine because he is amazing. But I didn't, you know, and it was just another blow. And I didn't understand what autism was. I didn't want my child to go to special school with all these special needs kids that I had no idea about. And I remember taking him when he was only three to look at one and it wasn't the right one for him. There was a lot of physical disabilities there and Harry has no physical disabilities at all. And I remember clutching him to her chest and sobbing and just saying, "I'm so sorry. I'm so sorry." And I think I was apologising for the fact that these were his options. Oliver was off to mainstream and this was what Harry had got. You know, we'd gone around a school, which is amazing that the school that we were in, but they were doing a lot of physical therapy on children that were moaning and groaning and... and I just felt like, again, I'd failed him and let him down. And then we went to a second school in the same day, and I was emotionally spent. I was really shattered. And we were walking around the classrooms and looking through the windows, and I was seeing these children happy, playing, laughing, smiling, thriving. And I got emotional. And the head teacher obviously mistook that for, for sadness. And she put hand on my shoulder and she said, " I know parents don't ever want to send their children to schools like this, but I promise we'll look after your boy." And I just thought, "He's here. This yeah, yeah, this is right. This This is the right place for my boy. And it was, and I never looked back. You know, they were amazing for him. Um, and in many ways, you know, his autism saves him from so much - the judgment of the Goldenhar and the cruel comments that he's had to endure. The autism has been a blessing in many ways. So it's tough. It is hard. But it's like anything, there's two sides. So this moves us beautifully onto where we can talk about your work and how you are actually using all of those experiences and your greater understanding of Goldenhar to, educate families and to educate other, children. But before we do that, can I just find out what was the turning point for you in terms of getting help for you and your recovery? Uh, planning to take my life. So I'd been in a car accident and I'd got some very, very strong painkillers left over from the car accident. And I got a very, very comprehensive plan on how to end my life and what to do about it. And my mum rang me on the evening and she just said, "Are you okay?" And it was just one of those moments when I could have said, "Yeah, I'm fine. See you tomorrow. I love you. Remember I love you." And I didn't. I just said, "No." And she came straight round and stayed with me the night, and then took me, literally dragged me to the doctors to say, you know, "My daughter needs saving from herself." And then I went on medication and I was so ashamed, so ashamed to be medicated. And yet it saved my life. And I'm currently medicated, actually, I, I was on antidepressant. Yeah, I have no, no fear of it at all. Um, I was medicated for only two and a half years. I was on antidepressants. And then three years ago I was put on anxiety medication for different reasons, but I have no shame around that at all. But back then I was really ashamed I couldn't just cope with it on my own. And I think I expected jazz hands and cartwheels. And actually the medication just leveled me out to a place where I wasn't manic anymore. And I didn't fear how I was going to wake up the next morning. I just woke up feeling calm and level. And from there, that gave me the grounding that I then went on to have private counselling and with the antidepressants and just taking one day at a time that made the difference. Yeah. Yeah. And how long would you say your recovery took? After that point from being medicated? Yeah. Or from your absolute nadir, that moment- like when did you feel like you turned a corner? That's such a good question. So probably, probably three years. So probably when my boys were about nine that I actually felt that I was maybe 10, that I actually felt that I was getting somewhere. I'd had a health scare and I decided to reduce my hours to part-time. And I think at that point I was making logical, sensible decisions for myself as a mum and as a teacher. Whereas before then I'd almost been punishing myself to be everything to everybody. It was almost like my, you know, my penance really for failing my children. You have to be everything to everybody. You have to be superwoman. You've got such a lot to make up for. And I think the minute I started to be kinder to myself and. Yeah, you've mentioned self-compassion. The minute I started to be more compassionate to myself is the point I think that turned things around for me. And for any mums or dads that are listening who are really struggling, they're in that sort of pit at the moment and finding it very hard to... they're just trying to power on through and not giving any regard to what they themselves need or what they're going through. Do you have a message to them? Self-awareness is so critical, but you, we don't always have it. So I would just be stopping and looking back on your day and thinking "The decisions I've made today, how have they served me and how have they served my children?" Because the scare that came for me was a suspected stroke when I was only 32. Uh, no, I was older than that. Sorry. I was 34. And it was just incredibly high blood pressure from the stress of life. But at that point, I was like, "If I die, what happens to the boys? Who cares for the boys? What happens to them? I can't die." And so the question is, you know, when we are pushing ourselves and punishing ourselves in the way that I did, we're actually punishing our kids because we're giving them half a version of who we are. And, and that's not fair to them. So if you won't do it for yourself, do it for them. You know, slow down and just be a little bit kinder to yourself. And we also model to our children how to cope in these situations. So when I was beating myself up and being mean, you know, I could look back and think, "Well, actually I'm showing Oliver how you treat yourself in times of struggle and challenge." And that's not what I want for him. So children learn by watching. They copy what we do, not what we say. And so there is a responsibility on our shoulders as parents to be you know, sort of happy, healthy human beings so that they can see -our children can see how to live. That's a beautiful segue into the work that you're doing now to increase understanding and awareness. Can you tell us about your organisation and the work that you do? Sure. So we've got the charity. So with the charity, I go into schools and I run an assembly, in which I introduce them to Harry, via the power of YouTube. And we do some workshops around writing to Harry, the younger children, and the older ones write to trolls online, on the internet. The feedback that I get from parents is just incredible. It lights me up, the charity work, you know, they'll come home and they'll say, "I can't get a grunt out of my children at the best of times," you know, "What have you done at school today? Nothing." And mums will say, "they come back and they're telling me about Goldenhar Syndrome. And they're telling me all about the abuse that you've had and how they're in 'Harry's Army', and it's not a fighting army, it's a kindness army. And they know what to do when they see somebody that looks different now." And that's just amazing. So that's really supporting the children and the next generation for when I'm not around to be here and to be Harry's voice. And then with the mums, that's very much around giving them a safe space to work through that grief and that guilt without judgment. And really from a place of understanding, you know, not just a therapist that has trained in grief, but somebody that's walked it and lived it. And we work through various different aspects of life, such as, losing your own identity, dealing with the loss of friendships. Some friends can't cope when you have a child with additional needs and you lose friendships. Um, you know, the reaction to other people, what other people think when you're in the middle of the supermarket and your child's having a meltdown and kicking the crap out of you, and you've got people saying "Your child needs a good slap", or they're just throwing looks at you and tutting- that's hard for parents to deal with. So we just address the issues that are pertinent for that mum so that she can then live a life with calm and confidence and contentment rather than overwhelm. And I think what you were saying there about grief, that's quite a key element, isn't it? Because you are grieving the birth, the family life that, you know, everybody goes into it having expectations rightly or wrongly. But yeah, I mean, did you feel you went through a grieving period? Absolutely. And I do still to this day at times. You know, Oliver had a prom- Harry didn't. Oliver has gone to college and is travelling to Japan next year- Harry won't. It never leaves, it never goes, but you just become more adjusted to it and life grows around your grief and you see the gifts that your child has, which offsets the grief, you see that they're having, they're living the best life for them and They're happy. And ultimately that's all we want as parents is for our children to be happy. So you, you do see that, but I think, yes, the grief never leaves. And I have been sort of slammed on social media at times for saying things like this, because they'll say, "Well, how will your children feel if they see that you are saying you grieved them and that you, you grieve? And I'll say, yeah, but you can, I can feel sorrow and pride at the same time. can know grief and love simultaneously. Those two things aren't mutually exclusive. You know, I can grieve the experiences Harry will never know and yet be completely thrilled that he's off on a three day residential with school. I can do both things and it's not that I grieve for Harry. I'm so proud of him. I'm so proud of the mum that he's made of me, of the broken bits of the woman that I was. Harry and Oliver have made me who I am today and I'm just so grateful and so proud of them for that. But damn right, it's a grief, you know? And I would argue with anybody that says it isn't. It's definitely a grief and it's a pain and we live with that and we work through it. And that's not negating Oli and Harry in any way. No, It's the situation. not. Not, Not, them. So what sort of relationship do the boys have? So the first five years I think they coexisted. And then Oliver became more aware of people being mean about his brother. And so he then became his big protector and defender. And so that went on probably about another five or six years. And then Oliver got to the age of about 13, 14. And we were at the stage where we would go out and do things that teenagers want to do, but we'd have to come home early because Harry would have a meltdown or he couldn't cope with it. And so I think Oliver's had periods of resentment as well. So he loves him fiercely, he protects him massively, but I also think he knows he's had to come second place such a lot, you know, so many times. And there have definitely been periods of resentment. He's kind of had, I say the worst of both worlds, but he's not been an only child because he's not sort of had us to to himself, but he's not had a sibling, he's not had Harry to partner with and play with. And I remember him being about seven and coming home from primary school and getting upset and he said, "Mum, some of the boys at school were saying that they'd been falling out with their brothers at school. And they don't know how lucky they are. I wish I could have an argument with Harry. They're so lucky to have brothers to fall out with or fight with and I don't have that." You know? Just little things like that. I think it's been a real journey for Oliver. I often say that the siblings of children like Harry are the unsung heroes of our stories. And I will tell you at a story really quickly, and I were pressed for time, but there was one time when Oliver was about four, four and a half, five, and he was questioning God for some reason. And we were at home and Harry'd had a real meltdown. And he said to me, he was talking to me about why- "Why did God send Harry to us? Why couldn't he send him to somebody else?" And I said, I don't know. They obviously, God obviously chose us for a reason." And he said, Mummy, you always say Harry's special, but you don't say I'm special. Why aren't I special?" And in that moment I just thought, "Crikey, I say 'special' meaning disabled, different, disfigured. I don't say special meaning unique and better than you", you know? But Oliver had heard it that way because he was four and four year olds do. And I said, "Oliver, you are special as well. When God sent Harry to me, he knew that I was going to have times when I found it really hard and really tough. So God sent you to me so that on the days when I felt that I was a bad mum, I could look at you and realise that I am a good mum and that I can do things right and you are my gift from God." And so I said to him, "You are the greatest thing I ever did." And to this day, even now, he's almost 17. him, If I text him and say, "Oli, what you?" He'll say "The greatest thing you ever did." Aww! My goodness! And that stayed with us, you know? And Harry is my sunshine boy. I sing 'You Are My Sunshine' and he sings it back to me. And he taught himself how to play the piano when he was two and a half. And he plays, 'You Are My Sunshine for me, you know? Andrew and I get married in April, and Harry's playing at the wedding for us. My goodness, that's amazing! It'll be some sort of 'Twinkle Twinkle/ Old MacDonald' mashup, but we don't care. We're not, we're not remotely bothered. We just love that he's taking part. So yeah, he's my 'Sunshine Boy' and Oliver's without doubt the greatest thing I ever did. And when I wrote and published my book, a lot of his teachers read it and they just said, "We had no idea what he puts up with at home." So yeah, I want to give a massive shout out to all the siblings because, you know, as you know personally, yeah, you put up with a lot. Aw, well, both your boys sound incredible. And so how is Harry these days and how's your relationship with Harry? Yeah, great. He is a feisty teenager with a mind of his own, um, functioning around about six years old, just becoming a little bit more independent. Swearing like a sailor at times. That's one of those, when your son says, you know, "F's sake" on a Monday morning, you kind of dunno that to tell him off or congratulating him for using it in the right context. So there's always that a battle. But yeah, they're amazing boys. Oliver has taught himself Japanese. Oliver is dyslexic and also autistic, we've realised recently. But he's fluent in Japanese. He's Amazing. Amazing. Uh, and we've got Harry, who is so gifted with his music. He's played as part of the police orchestra, in Birmingham. They're just incredible boys. They're amazing boys. I'm so, so proud of them. How do you feel about Oli going to Japan? That's Yeah, adventure. Hard for you as mum though! He is. Yeah. No good. He's going out there for one month with his stepbrother and stepsister, so the three of them are going out together. And I think it will be an adventure of a lifetime for him. I really hope that it shapes him. I try very hard to encourage him to get out of our postcode area. His dad and his dad's family have set up a very successful business, but it's based where we are and I would really love him to spread his wings. And so I've always, since he was very little, since Oliver was about three, if ever we've had time on our own, I've taken him away. So we've been to Manchester, we've been to Liverpool. We've been to London several times. When he was 11, he became obsessed with the Colosseum. Um, so I saved 60 pounds a month. And for his 13th birthday, we went to Rome for four days. Oh amazing! As a surprise, you know, so I, I just try and make sure that he sees a little bit of the world, and just then can make his own decision. If he chooses to stay local, then that's fine, but it won't be because I've kept him here. It will be because I've encouraged him to go. I don't want him to, for me -selfish reasons, I'd keep him with me forever! But for him, I want him to see the world, you know, because he can achieve whatever he wants to. Oh, so it sounds like things are are good. You're in a good place Yes. You're getting married! It's all good. Yeah. Andrew and I have been together almost 11 years now. It will have been 11 years on the day that we get married. And he's an amazing stepdad to both of my boys. My boys absolutely adore him. So, yeah, we are in an amazing place. I always say Tales With A Twist can have a happy ending, and we are in that place now. So it's, it's, it's good. It's been hard, it's been dark. It's been a struggle. But we're in a good place now. And would you say any regrets about all of the trauma that you've been through? I mean, do you feel you've benefited in any way from all of that? Completely. Yeah, I do. I think it shaped who I am. I think in not so much regrets, but it just makes me sad that I was so mean to myself for so long, and that's what definitely drives me to support other mums now. I don't want other mums to be six years in, wanting to take their own life before they realise that the only way they can fail is to blame themselves for something that was never their fault. No, exactly. And that's easy for us to say now, looking objectively, but when you're going through it, yeah. you don't have that clear thinking. But I am speaking with mums now that really appreciate talking to somebody who felt like that as well. And again, sitting and giving them that space to talk about what they're grieving. Let's list what you are grieving, let's list what you'll never know, let's list what you think your child will never experience. And they might, you know, in some guise or another they may, but it's really important that we validate that loss, right at the beginning, and then we can move through everything else. So Charlie, you mentioned that you'd written a book. Can you tell me a bit more about that? Yes, so it's called 'Our Altered Life', same as our social media. And it's very much the book I needed to read right at the beginning of the journey. So everybody that reads it says it made them cry. It also made them laugh out loud so you know, it chronicles the highs and the lows. And for me it was really important to be brutally honest and to not skirt around any of the issues that I knew needed addressing early on. So it's been read internationally. There's loads of great reviews, so you can buy that on Amazon and hopefully people will get a lot from that. Lots of Mums have reached out and said, "You've written what I daren't say." So in that instance, it's a great introduction to me and my boys. And did you find it cathartic then? Yeah, very much so. Initially it was just gonna be something I did for myself and it took me nine years. I just wrote bits, left it, wrote bits, left it, and then had a couple of friends read it and they just went, "You so need to publish this. It absolutely needs to be a book." And so I did, not really expecting much and - behind my boys- I would say my greatest achievement. How do people get hold of you, if they're looking for support either for themselves or for loved ones. So we are all over social media as Our Altered Life, and if people want to email me, they can do so at 'info@ouralteredlife'. I do have a newsletter that I'd encourage people to subscribe to if they're a mum in this position. And it is very specifically written for mums like me. But they can access that by emailing me or they can find the link on Instagram, under Our Altered Life. My brother's disabled as well, and I remember my mum saying that she found it very, very hard being amongst other mums because, you know, her baby wasn't a pretty baby and he was having very different experiences or delayed development compared to others. And I think for a lot of mums who do have healthy babies, they probably, again, feel guilty if their friend or somebody that they know isn't having the same experience or perhaps they feel awkward about how to respond, how to react to the baby who might have, you know, disfigurement or disabilities. What advice would you give to them about the best way to help or respond? I think two things. I think, you know, sort of name the elephant in the room, first of all. If somebody come to me and said, "Charlie, I've never had a baby or known a baby with a disfigurement, and I might say the wrong thing, but I'd love to know a bit more about what you're going through", I'd have been so grateful and so touched. And on a similar vein, I would say be interested over interesting, particularly new mums. I think we're all so proud of, of babies and we're all so keen to say "Mine's walking, mine's talking, mine's doing this, mine's doing that." We're so desperate to share and we're not asking questions. We are sort of giving information. So I think just be interested in each other's babies, and, and don't have that judgement of "Ooh, not walking yet? Is something wrong?" You know, asking those questions. I would name the elephant in the room and just ask lots of questions. And include parents, you know, I know parents like myself, our children often don't get invites to parties. They don't get included in things like that. And I would just say, give us the opportunity to say yes or no. You know, don't just assume or feel awkward that they can't join in. Let us be the one that decides that. Just include us and wrap your arms around us in the same way that you would any other mum. Yeah, all of what you're saying is such incredible advice and there is that awkwardness and not wanting to say the wrong thing or do the wrong thing. So there's an avoidance. These are really helpful, practical tips. So thank you. And I, can't wait for my mom to listen to this episode cause I think, I think it's gonna resonate with her so hugely - obviously very, very different circumstances. But I think a lot of the feelings that you have touched upon today, will be things that she can very much relate to having gone through. So thank you. Been such an inspirational guest and you're such a joy to speak to and I'm absolutely keeping everything crossed for your wedding to go ahead. No covid, no pandemic affecting it. And uh, yeah, I can't wait to hear about Harry's rendition as you stroll down the aisle. That sounds like a wonderful thing. Place your bets now, it'll be Old MacDonald or something random, but we don't even care! Yeah, exactly! Thank you so much for joining us today. Thank you Vikki. If you've enjoyed this episode of Blue MumDays, please like and subscribe. It really does make the difference in helping other people find it and that means helping more parents.
