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World Down Syndrome Day Special: JANNAH AND MUSA'S STORY
Episode 32Bonus Episode21st March 2023 • BLUE MUMDAYS • Vikki Stephenson
00:00:00 00:59:33

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For this Blue MumDays special celebrating Down Syndrome Awareness Day, I'm joined by the beautiful Jannah Hayah. Jannah talks to me about life with her gorgeous son Musa, who is 5. Musa has Down Syndrome, hearing loss and is fed via a feeding tube. Jannah is passionate about wanting the world to know that while a life living with disability can have its challenges, the struggle comes with incredible rewards. It's a wonderfully life-affirming conversation.

*TRIGGER WARNING: *Birth trauma and a very brief mention of feelings of suicide*

IN THIS EPISODE WE DISCUSS:

[00:00] Teaser quote.

[02:25] Introduction to Jannah and Musa.

[04:43] Judgement on Jannah looking well presented - double standard for women.

[11:08] Life before Musa. Transitioning into a mum with her older children.

[12:59] Musa's traumatic birth. Receiving the diagnosis of Down Syndrome.

[19:47] The damage of the words that were used.

[23:18] The need to take your time to accept and find peace with the diagnosis.

[26:01] How Musa has shaped Jannah into the woman she is today.

[27:36] The hugely positive affect Musa has had on his older siblings.

[31:54] The social model of disability - the need for society to be more accessible and inclusive for all.

[36:50] How people 'give up' making an effort as soon as they hear Musa is disabled.

[38:25] How Musa is determined and finds his own way in the world.

[41:19] Lack of support and information for Jannah at the time of the birth.

[43:54] Musa's difficulties feeding, due to low muscle tone.

[47:32] Being dismissed and ignored when asking for help.

[49:23] Hitting rock bottom. Discovering local group Jolly Josh - an absolute lifeline.

[53:37] Meeting the dietician - having the feeding tube properly explained to her.

[55:56] How Jannah's culture and religion perceives people with impairments and conditions.

[57:43] Musa's legacy - educating the world on inclusion.


KEY TAKEAWAYS:

  1. Follow Jannah and Musa's Instagram or Twitter Feed for endless positivity and inspiration and to learn more about Musa’s journey.
  2. Jannah is an Ambassador for Making Chromosomes Count, a challenging, thought-provoking and inclusive non-profit magazine exploring the fascinating kaleidoscope that is Down Syndrome.
  3. The Down's Syndrome Association is a national organisation, committed to improving the quality of life of people who have Down’s Syndrome, promoting their right to be included on a full and equal basis with others. 
  4. NHS information on Down's Syndrome – click on this link for more information about the condition, where people are born with an extra chromosome.
  5. Cristina at DiffAbility Charity is the amazing mum who delivers free ‘Welcome to the World’ packs to new parents in hospitals, welcoming and offering support to babies with Down Syndrome. Diff-Ability is a charity creating to create events and opportunities for people with disabilities, learning disabilities, Autism and neurodiverity to engage in with their families and friends.
  6. Shani Dhanda is one of the UK’s highest profile and most influential disability activists. She is an entrepreneur, a broadcaster and multi-award winning inclusion specialist.
  7. Scope charity campaigns for equality for disabled people. With 1 in 5 people living with impairments or conditions, disabled people are NOT a minority.
  8. Follow this link to learn more about the Jolly Josh Charity, the local group in Rochdale which provided a lifeline for Jannah. Jolly Josh provides dedicated peer support and safe spaces for children and young adults, families, and carers of children with profound multiple learning disabilities, complex, and special needs.
  9. Find out more about 'Positive About Down Syndrome' here – a fantastic resource of support and reassuring and inspiring stories showing the reality of life with Down Syndrome.
  10. Click here for information on Contact, who support families with children affected by impairments and conditions. They also influence policy and campaign to tackle the inequalities they face.


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.


Follow us:

Instagram / Twitter / Join our Facebook Group / Email: bluemumdays@gmail.com

 

NEXT EPISODE:

Next time I chat to Nick Raeburn, aka 'That Social Nerd'. Nick came to my attention in a very brave and raw post he posted on LinkedIn where he talked about the huge flood of emotion he experienced in becoming a dad. Prior to having children, Nick had never cried - a result of the abuse he suffered as a child. This is a very emotional and deeply profound conversation.


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. 

*** For support specific to this episode, see Key Takeaways ***

We hope these support services are helpful (please note we do not check or monitor them individually).


Action on Postpartum Psychosis (APP)

Moderated Forum, click here to find out more.

Email: app@app-network.org / Tel: 020 3322 9900


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 (leave message)


Andy's Man Club

A non-judgemental talking group for men

https://andysmanclub.co.uk/club-information/clubs/ info@andysmanclub.co.uk


Association of Postnatal Illness

Helpline: 10am – 2pm – 0207 386 0868 / Email: info@apni.org (Live chat online facility)


Beat Eating Disorders,

The UK's eating disorder charity.

0808 801 0677 / Email: help@beateatingdisorders.org.uk


Best Beginnings

Free NHS-accredited Baby Buddy app offering 24/7 App support for new parents


Bi-Polar UK

email: info@bipolaruk.org


Birth Trauma Association

Email: support@birthtraumaassociation.org.uk


CALM

Contact CALM on their national helpline: 0800 58 58 58 (5pm-midnight)


Cedar House Support Group

Email: lwise@talktalk.net (Liz Wise) / Mobile: 07773 283556


Contact: for families with disabled children

Support, advice and information for parents with disabled children.


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.


Dad Matters

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


DadsNet 

Offers support and knowledge through a community of dads on practical parenting and fatherhood.


Dope Black Dads

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 / 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 /  www.frg.org.uk

 

Fathers Reaching Out

https://www.reachingoutpmh.co.uk/ run by Mark Williams, offering support to dads.


FiveXMore

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 /  www.gingerbread.org.uk


The Hub of Hope - A directory of mental health support around the UK.


LGBT Mummies

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


Maternal OCD

Peer support available, email info@maternalocd.org to arrange


Mayah's Legacy

Supporting and empowering anyone who has experienced pregnancy loss to advocate for themselves.  Email: info@bigoutreach.org / 0300 102 1596


The Motherhood Group

Dedicated to sharing and supporting the black maternal experience through peer support, projects and advocacy. info@themotherhoodgroup.com


Motivational Mums Club

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


Music Football Fatherhood - hello@musicfootballfatherhood.com

Open conversations around fatherhood, including blogs, peer support and podcasts.


Muslim Women’s Network

Helpline: 0800 999 5786, open Mon-Fri 10am–4pm with support offered in English, Urdu, Punjabi, Mirpuri, Putwari, Hindko and Bengali. Email: info@mwnhelpline.co.uk

Online chat: www.mwnhelpline.co.uk / Text: 07415 206 936


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.


Netmums

Netmums offer peer support via their Maternal Mental Health Drop-InClinic.

 

NHS

Contact your local GP surgery. Call the NHS on 111

or contact a local NHS urgent mental health helpline

If you are in crisis, visit Accident & Emergency at your nearest hospital.

 

PANDAS

Helpline open from 9am-8pm every day – 0843 2898 401

Email support available – info@pandasfoundation.org.uk


Perinatal Wellbeing Ontario

PRENATAL, PREGNANCY AND POSTPARTUM SUPPORT & CONNECTION in Canada

info@perinatalwellbeing.ca


Petals

Petals offers free-of-charge specialist counselling to anyone who has experienced pregnancy or baby loss. Tel: 0300 688 0068

Web: petalscharity.org/counsellingcontact/

Email: counselling@petalscharity.org


PMH Support

Scott Mair is a consultant in paternal mental health and parent education, Peer support trainer. Dad, Husband, Army veteran. 


Samaritans

Tel: 116 123 (this is a free telephone number and will not appear on the phone bill)

Web: www.samaritans.org

Email: jo@samaritans.org


Sands Charity

Emotional and practical support for anyone affected by the death of a baby.

0808 164 3332 /Email: helpline@sands.org.uk

Transcripts

JANNAH:

Becoming a mum to a child who comes with a disability,

JANNAH:

it did kind of shake my world.

JANNAH:

I wish I could say that when he was born and the diagnosis got thrown at

JANNAH:

me that I was this positive as I am now and accepting and positive and

JANNAH:

looking at the bright side of life.

JANNAH:

But, unfortunately I wasn't.

JANNAH:

We got a birth diagnosis with Musa- we didn't know that he had Down

JANNAH:

Syndrome when I was carrying him.

JANNAH:

I know they need to tell parents that their children have got

JANNAH:

disability, but it's the words you choose and how you say it.

JANNAH:

I would've appreciated him to come and instead of saying,

JANNAH:

"I have some terrible news".

JANNAH:

You know, Musa's Down Syndrome isn't terrible - at one time I

JANNAH:

thought it was terrible.

JANNAH:

I did, I looked at it as terrible, because I thought,

JANNAH:

wow, how is my life gonna change?

JANNAH:

It's a shadow in our life and what's his life gonna be like?

JANNAH:

Is he gonna be able to do things?

JANNAH:

Is he gonna enjoy life?

JANNAH:

But, the thing is, you could still congratulate a mum for having

JANNAH:

this child because, you know, it doesn't matter about his disability.

JANNAH:

He's a human being, and we're all born with worth.

JANNAH:

And I'm so, so proud of Musa and nobody, and nothing that anybody

JANNAH:

says is ever gonna make that any less because he is just an

JANNAH:

amazing and incredible human being.

JANNAH:

You know, at five years old, he is teaching the world about inclusion

JANNAH:

and accepting of people who are different, you know, I couldn't

JANNAH:

be more prouder to be his mum.

VIKKI:

Having a baby is meant to be the most joyful time of your life.

VIKKI:

But for many mums and dads, it can be the hardest and at

VIKKI:

times the darkest of places.

VIKKI:

Welcome to Season 2 of Blue MumDays, the podcast for anyone

VIKKI:

struggling with parenting.

VIKKI:

All the stories shared here are from the heart.

VIKKI:

These are real conversations and may be triggering, so

VIKKI:

please listen with discretion.

VIKKI:

Today's episode covers birth trauma and feelings of suicide.

VIKKI:

We will also signpost you to help in the show notes.

VIKKI:

Thank you.

VIKKI:

Today's guest is Jannah.

VIKKI:

Jannah is a mum of three- two teenagers and her youngest Musa, who is five.

VIKKI:

Musa has Down Syndrome, hearing loss, and is fed via a feeding tube.

VIKKI:

Jannah and Musa are passionate about wanting the world to know that while

VIKKI:

a life living with disability can have its challenges, the struggle

VIKKI:

comes with incredible rewards.

VIKKI:

Musa brings so much joy and happiness to the people around him, amidst

VIKKI:

the struggles and challenges he faces each and every day.

VIKKI:

And I'm so -pleased Jannah is here with us today to share her and Musa's story.

VIKKI:

So welcome to Blue MumDays Jannah, lovely to have you here.

JANNAH:

Hello, thank you for having us here.

VIKKI:

Oh, so welcome and I'm so excited to have you here to celebrate a Blue

VIKKI:

MumDays special, which is for World Down Syndrome Day, which is taking

VIKKI:

place on Tuesday, March the 21st.

VIKKI:

It's long been an intention of mine to have guests on who are parenting

VIKKI:

children with additional needs or who are living with conditions and impairments,

VIKKI:

either themselves or the children.

VIKKI:

Because for me it's so incredibly important that my guests and

VIKKI:

my listeners feel seen, heard, and represented in every way.

VIKKI:

So thank you so much for sharing your story with us today.

VIKKI:

I'm sure it will be so helpful and reassuring and encouraging

VIKKI:

for so many of my listeners.

VIKKI:

Thank you.

JANNAH:

Thank you for giving us the opportunity as well.

VIKKI:

Oh, you're so welcome.

VIKKI:

And because we are living in the real world, if you hear a bit of background

VIKKI:

noise, is that Musa this morning?

JANNAH:

Yes.

JANNAH:

He's off school today.

VIKKI:

Oh,

JANNAH:

today because he's not feeling great.

JANNAH:

He's had a really miserable night with his breathing

VIKKI:

oh, little man.

JANNAH:

Yes.

JANNAH:

And he is woke up this morning and he is, got a few spots around

JANNAH:

his face, so you know, he's not, he's not having the best of times.

VIKKI:

Oh.

VIKKI:

Are you sure you've got the energy to do this?

VIKKI:

We can reschedule.

JANNAH:

Yeah, yeah.

JANNAH:

Oh no, no.

JANNAH:

Don't worry about it.

JANNAH:

He's, honestly, he's got his iPad and he's got his little

JANNAH:

dolly and he's absolutely fine.

VIKKI:

Uh, well, this is very much a podcast that's made in the real world.

VIKKI:

Normally it's my cat in the background meowing and interrupting everything.

VIKKI:

So, uh, no, it's lovely to hear Musa in the background and I

VIKKI:

really hope he's feeling okay.

VIKKI:

And if you need to break at any point to settle him, that's absolutely fine too.

VIKKI:

I just have to ask you, how the hell do you look so good and polished

VIKKI:

and together after a difficult night

JANNAH:

Oh.

VIKKI:

one?!

JANNAH:

It's a struggle.

JANNAH:

It's a struggle.

JANNAH:

And actually that comes with, um, positives and negatives too,

JANNAH:

because you get people who admire that and will say "Wow, like, you

JANNAH:

know, um, don't you look fantastic?"

JANNAH:

Because my thing is no matter how bad the night might have been or how

JANNAH:

I might be feeling when I go out, I make sure I've got my makeup on.

JANNAH:

I'm dressed well and it is the image I like to show outside is of a

JANNAH:

person who's got everything together.

JANNAH:

But like I said, sometimes it comes with its negatives as well, because

JANNAH:

sometimes I have got comments like, you know, " You don't seem like

JANNAH:

you've got a child with a disability.

JANNAH:

How do you get the time to do all that?

JANNAH:

Why don't you spend more time looking after your child?

JANNAH:

Um, instead of..."

VIKKI:

You never, you never!

JANNAH:

Yeah, you'll be surprised!

JANNAH:

And, you know, "Instead of getting up in the morning and putting

JANNAH:

makeup on your face, why don't you spend that time with your child?"

JANNAH:

Um, Musa's happy.

JANNAH:

He's a happy boy, you know, his needs have been met.

JANNAH:

And if I choose to wake up early to make sure I go out looking

JANNAH:

presentable, I feel that's my choice.

JANNAH:

And, you know, it's not, you know, something that anybody

JANNAH:

needs to feel threatened by.

JANNAH:

You'll

VIKKI:

isn't that incredible that in the year 2023, and we're actually

VIKKI:

chatting on International Women's Day, so I can't think of a more, you

VIKKI:

know, pertinent day to be chatting.

VIKKI:

Isn't that disgraceful that people

JANNAH:

Yeah.

VIKKI:

like they have the right to comment?

JANNAH:

You just feel like you don't, you are never getting anything.

JANNAH:

Right.

JANNAH:

Um, so it's like, . If you go out looking like you've been hit by 10,000 buses,

JANNAH:

then

VIKKI:

today!

JANNAH:

Then, you'll also get the comments where, you know, "Oh my God, look at her!

JANNAH:

Having a child with disability, look what it does to you.

JANNAH:

Oh, no wonder!"

JANNAH:

And then it shows, it shows the negatives on the side of our children where people

JANNAH:

think, "Oh yeah, look", you know, "they have children with these disabilities and

JANNAH:

they end up not looking after themselves."

JANNAH:

But then you do look after yourself, but then you get told, "Why are you doing it?

JANNAH:

Because why don't you spend more time looking after your child?"

JANNAH:

So it's like you, you get to the point where you just feel like you're just

JANNAH:

never going to be able to do or be enough.

JANNAH:

And you know, it is because obviously it's in International Women's Day and,

JANNAH:

you know, it's, the struggles for mums is, it is just so much and because of the

JANNAH:

image that we have to have for society.

JANNAH:

Dads can just disappear into the gym and work out, work on their bodies, make

JANNAH:

themselves look nice, and nobody ever will comment or say like "Oh, wow, where do

JANNAH:

you get the time to go and do all that?"

JANNAH:

If anything, they'll be congratulated and be told "Oh yeah, good."

JANNAH:

You know, "It's great for your mental health.

JANNAH:

Go to the gym.

JANNAH:

You need to go to the gym.

JANNAH:

You need to look after yourself."

JANNAH:

But it's like, on the other hand, if a mum does it and she looks after herself and

JANNAH:

she loses weight or she looks nice, it's always "Oh my God, why is she doing that?"

JANNAH:

You know?

JANNAH:

" Is something going on?

JANNAH:

Is she having an affair somewhere?

JANNAH:

Or why, why is she trying to look after herself?"

JANNAH:

It's always like, do we look after ourselves or do we let ourselves go?

JANNAH:

But you know, we're never gonna, you know, we're never gonna be enough.

VIKKI:

Yeah- whatever it is, it's never right.

VIKKI:

It's weird, isn't it?

VIKKI:

And it's something that we've talked about a lot on the podcast as well is

VIKKI:

either societal pressure or internal pressure that as soon as you become a

VIKKI:

mum it's like everything you do and your sole purpose is for the child.

VIKKI:

And so if you do any sort of self care for yourself, I mean, I know I feel really,

VIKKI:

really guilty even though my husband and you know, my family encourage it.

VIKKI:

But it's that thing, you know, and I can imagine, like you say, so many um

VIKKI:

dads going to the gym, looking after themselves, going for a run or a walk,

VIKKI:

whatever that is seen as self care.

VIKKI:

But when you are a mum it's almost like "how selfish!"

VIKKI:

Or you feel that people are judging you.

JANNAH:

Yeah, always.

JANNAH:

You know, a lot of times there'll be, sometimes you'll be like,

JANNAH:

"Oh, where's, where's your child?

JANNAH:

You know, why is he not with you?"

JANNAH:

But, you know, he's, he's not glued to me.

VIKKI:

Yeah, and you are allowed to do things by yourself!

JANNAH:

Yeah!

JANNAH:

Because I remember when Musa was, um, he was couple of weeks old, I think

JANNAH:

it must have been about six weeks old.

JANNAH:

And with his new diagnosis and everything, it was the first time that I ventured

JANNAH:

out and I thought, you know what?

JANNAH:

I just need some time and I just need to, um, just get out for an hour.

JANNAH:

And I remember just going for a walk and just going out for a bit.

JANNAH:

And then I remember seeing someone that I knew and, um, she came to say hello to me

JANNAH:

and everything, and then she was looking around and she goes, "Where's your baby?

JANNAH:

Where's your baby?"

JANNAH:

And I'm like, "Oh, he's at home.

JANNAH:

He's with his dad and his siblings".

JANNAH:

And she's like, "Oh my God, you've left him!

JANNAH:

You've left him alone!"

JANNAH:

And I'm like, "He's not alone- he's with his dad."

JANNAH:

And it's almost as if like, it was a shock that I'm even out.

JANNAH:

And why am I out on my own?

JANNAH:

Why have I not got this child glued to me?

JANNAH:

And it just makes you feel like, you know, you just see yourself as a mum, like

JANNAH:

you don't see yourself as you anymore.

JANNAH:

It's just, I have to be glued to my children all the time.

JANNAH:

I I wish people knew how badly that could sometimes affect people's mental health

JANNAH:

as well, because like, you don't know, like with that time with me, it was, for

JANNAH:

me, it was like I just needed to get out because I just wanna forget for, for just

JANNAH:

an hour, I wanna forget this diagnosis that's hanging over my head right now.

JANNAH:

And all the medications that have I, I've got looking at,

JANNAH:

staring at me for just one hour.

JANNAH:

I just wanna go outside and forget about it.

JANNAH:

But then you're reminded about it because you thought, because "Why?

JANNAH:

Where, where is the child?

JANNAH:

Why's he not with you?

VIKKI:

Yeah.

VIKKI:

And why shouldn't you be allowed time to process?

VIKKI:

... my neighbours are having work done on their house and they've just

VIKKI:

started drilling in the background.

VIKKI:

So just in case any listeners hear it in the background, I'm so sorry,

VIKKI:

but like I said, this is the real world and it won't interrupt what is

VIKKI:

gonna be a brilliant conversation.

VIKKI:

So I really want to move on to, to talking about Musa and your experience of having

VIKKI:

Musa and what it's like parenting him.

VIKKI:

And I can't wait to learn more about him.

VIKKI:

I mean, I came across you via Instagram and I just love your videos because

VIKKI:

they're so positive and they just make my heart burst because he is

VIKKI:

such a gorgeous, smiley, happy boy!

VIKKI:

But just for a little bit of context, what were you like before

VIKKI:

you became a mum and I still cannot believe you have teenagers because

VIKKI:

you look like you're about 20!

JANNAH:

Thank you.

JANNAH:

Thank you!

JANNAH:

I don't feel it most days, but yeah!

JANNAH:

Um, becoming a mum in general is just, your life just changes overnight because

JANNAH:

you somehow have to become a different person . With the older two, obviously

JANNAH:

not, not much, changed because, you know, they were born and it was the

JANNAH:

little, um, changes of, you know, your life changing, stop working and staying

JANNAH:

at home, being around your child.

JANNAH:

And then slowly as they grow up, you kind of feel like you've got

JANNAH:

some parts of your life back again.

JANNAH:

Not all parts of them because you feel like you're never the same anymore, but

JANNAH:

at that time I felt like as they grew up and they started going to nursery,

JANNAH:

they started to go off to school.

JANNAH:

It's like as if I got chunks of my life back again.

JANNAH:

So I started doing things that I like um, and enjoy.

JANNAH:

So like getting a part-time job, spending time at the libraries, at the cafes,

JANNAH:

you know, when they're not around me and just like being on your own, you know?

JANNAH:

I don't know about other people, but I do actually enjoy spending time on my own.

JANNAH:

Um, sometimes I just actually like going to the cafe and sitting

JANNAH:

on my own with my thoughts and my diary and I enjoy that time.

JANNAH:

Um, but it's like getting those times back again.

JANNAH:

Becoming a mum to a child who comes with a disability, it

JANNAH:

did kind of shake my world.

JANNAH:

I wish I could say that when he was born and the diagnosis got thrown at

JANNAH:

me that I was this positive as I am now and accepting and positive and

JANNAH:

looking at the bright side of life.

JANNAH:

But, unfortunately I wasn't.

JANNAH:

We got a birth diagnosis with Musa- we didn't know that he had Down

JANNAH:

Syndrome when I was carrying him.

JANNAH:

They do do a test at 20 weeks, which I refused, because you just

JANNAH:

don't ever think, it's gonna be you.

JANNAH:

this time, I just thought to myself, "No, that's not gonna be us."

JANNAH:

You know.

JANNAH:

But then, when he was born, we had like a, a kind of very traumatic birth with

JANNAH:

him anyway, because he stopped moving.

JANNAH:

And when I went into hospital because he'd stopped moving, they

JANNAH:

couldn't find his heartbeat.

JANNAH:

They didn't know whether he was gonna be born alive or not.

JANNAH:

So they rushed me into theatre to get him out.

JANNAH:

When they took him out, he was basically unresponsive and not breathing.

JANNAH:

He was blue, he turned blue.

VIKKI:

My goodness.

JANNAH:

And that part of it was nothing to do with his Down Syndrome.

JANNAH:

It was because he'd, his cord was wrapped around his neck so tightly

JANNAH:

that, he basically stopped breathing.

JANNAH:

So as soon as he was out, they rushed him in and resuscitated

JANNAH:

him and got him breathing again.

JANNAH:

So that part of all that was just so traumatic because I

JANNAH:

didn't know what to expect.

JANNAH:

I remember when they brought him out, even now, I can't actually look at those

JANNAH:

pictures of when he was, when they first brought him to me because he's so pale.

JANNAH:

He looks like he's not breathing in the pictures.

JANNAH:

I can't look at them.

JANNAH:

They really make me emotional when I look at those pictures, and it

JANNAH:

brings back the trauma of that birth.

JANNAH:

So that part of giving birth to him was traumatic anyway, without

JANNAH:

any concern of his disability.

JANNAH:

But then the paediatric doctor did pick up, um, some signs that were indicating

JANNAH:

that he may have Down Syndrome.

JANNAH:

The doctor came to talk to me and my husband to say that they were

JANNAH:

gonna have to send his bloods to test and things like that, to confirm

JANNAH:

that he does have Down Syndrome.

JANNAH:

And it was just the doctor's words.

JANNAH:

I never forgot the words.

JANNAH:

Just the whole sentence.

JANNAH:

And even now, every time I remember the first thing the doctor said,

JANNAH:

it makes me really sad still.

JANNAH:

And I still feel it makes my heart really heavy and brings back all the anxiety.

JANNAH:

So the doctor came in the room and he said, "I'm terribly

JANNAH:

sorry but baby has features that don't belong to mum and dad."

VIKKI:

What?

JANNAH:

I didn't know what he was saying.

JANNAH:

I didn't even know what that meant.

JANNAH:

Vaguely I'd heard about children that were born with cleft

JANNAH:

palate and things like that.

JANNAH:

And in my mind I thought to myself, "Is it something like that?

JANNAH:

Is he trying to say he's got something like that?"

JANNAH:

But then I looked at him because he was in his cot thing.

JANNAH:

And I looked at him and I couldn't see anything like that because

JANNAH:

his face looked like his lips were formed, his nose was formed.

JANNAH:

And I thought he didn't look like he's got that.

JANNAH:

So what does he mean?

JANNAH:

And then he said it again, he said, "Baby has features that

JANNAH:

don't belong to mum and dad."

JANNAH:

And I'm like, "Okay."

JANNAH:

And then I just said, " You've lost me.

JANNAH:

I don't get you."

JANNAH:

I said, His features look fine to me."

JANNAH:

And then he went to elaborate on what he meant, " Can you see his slanted eyes?

JANNAH:

He hasn't got a bridge in his nose."

JANNAH:

and then I just said um, "I don't know.

JANNAH:

I don't know what you mean," because I said, "He just

JANNAH:

looks like his older brother."

JANNAH:

I said, "He's got those eyes as well.

JANNAH:

Our eyes are just like that.

JANNAH:

Some people have slanted eyes, so I don't know what you mean."

JANNAH:

And that's when he went on to say that " They're all signs of Down Syndrome",

JANNAH:

but then as soon as he mentioned the word Down Syndrome, everything else,

JANNAH:

everything else was a blur to me.

JANNAH:

I could just hear him talking in the background, but I couldn't hear anything.

JANNAH:

So there was just a voice in the background then and nothing else.

JANNAH:

And basically he just said that and disappeared and left us to it.

JANNAH:

So we were just told that "This baby has Down Syndrome" and there was nothing else.

JANNAH:

I spent seven days in hospital, but those seven days were just every single

JANNAH:

day it was finding out something new.

JANNAH:

So constant blood tests because, " Oh my God, his platelets are too low.

JANNAH:

Why are they low?

JANNAH:

We need to find out.

JANNAH:

Oh my God, he's got a heart murmur, we need to find out.

JANNAH:

Will he need to go in for heart surgery?"

JANNAH:

So it was like every time you heard footsteps come into your

JANNAH:

room, it was that anxiety of "What am I gonna get told now?

JANNAH:

They're gonna tell me something else, break something else to me."

JANNAH:

It was just such a horrible time in my life.

JANNAH:

I think I spent my whole day and night just crying thinking, you know, "I

JANNAH:

don't think I'm cut out for this life and how is my life gonna change?

JANNAH:

It's never gonna be the same again."

JANNAH:

I was worried for my older two, you know, my daughter, she was just

JANNAH:

going into high school that year.

VIKKI:

Such an important transitionary period for children.

JANNAH:

Was finishing, she was finishing primary school and going into high school.

JANNAH:

My son had just finished his first year of high school, because they're a year apart.

JANNAH:

And I just felt sorry for them.

JANNAH:

I just used to cry for them feeling sorry for them thinking "What

JANNAH:

is life gonna be like for them?

JANNAH:

Will we ever go on holidays?

JANNAH:

Will we do things as a family together or will we always be stuck in hospital?

JANNAH:

What is his care gonna be like?

JANNAH:

And I feel there was no reassurance, if you get what I mean, from the

JANNAH:

doctor who broke the news that, you know, "Don't worry, things might get

JANNAH:

hard but you know, you'll cope."

JANNAH:

And the main thing is that I just, what breaks my heart is that

JANNAH:

there was never a congratulation when it came to Musa, you know?

JANNAH:

Um, When I talk about it, people think it's just a small thing,

JANNAH:

but it isn't for mums, you know?

JANNAH:

It makes me sad when I think that when my older two were born um, I

JANNAH:

was congratulated for having a baby.

JANNAH:

The first thing the doctor said, all the nurses said when they saw them

JANNAH:

were, "Oh, wow, congratulations, haven't you got a beautiful baby boy.

JANNAH:

Or you've got a beautiful baby girl.

JANNAH:

But that got stolen.

JANNAH:

It's a moment of my life that got stolen that I'm never gonna get back.

JANNAH:

Because there wasn't a congratulation.

JANNAH:

The reason I mention the story of our birth, of Musa's birth and

JANNAH:

that story of the doctor is because I really do hope and wish that

JANNAH:

it's not repeated to other mums.

JANNAH:

Like, I get people asking me when I talk about it in my videos that, you know,

JANNAH:

"Oh, well, what did you want them to say?

JANNAH:

Um, did you want them to sugarcoat it and say he doesn't

JANNAH:

have a disability when he does?

JANNAH:

They need to tell you."

JANNAH:

And yeah, by all means, I know they need to tell parents that their children

JANNAH:

have got disability, but it's the words you choose and how you say it.

JANNAH:

I would've . Appreciated him to come and instead of saying,

JANNAH:

"I have some terrible news".

JANNAH:

You know, Musa's Down Syndrome isn't terrible - at one time

JANNAH:

it, I thought it was terrible.

JANNAH:

I did, I looked at it as terrible, because I thought,

JANNAH:

wow, how is my life gonna change?

JANNAH:

It's a shadow in our life and what's his life gonna be like?

JANNAH:

Is he gonna be able to do things?

JANNAH:

Is he gonna enjoy life?

JANNAH:

But, the thing is, you could still congratulate a mum for having

JANNAH:

this child because, you know, it doesn't matter about his disability.

JANNAH:

He's a human being, and we're all born with worth.

JANNAH:

We don't have to achieve it by doing anything for people.

JANNAH:

We don't have to achieve our worth by doing anything.

JANNAH:

We don't have to do anything for people.

JANNAH:

We don't have to be anything.

JANNAH:

We don't have to do things.

JANNAH:

It's us.

JANNAH:

We were all born with it.

JANNAH:

So he was born with it too.

JANNAH:

And his diagnosis should not have taken that away from him.

JANNAH:

The doctor should still have come into the room and said, congratulations on

JANNAH:

the birth of your beautiful baby boy.

JANNAH:

Because that's what he was, regardless of his Down syndrome,

JANNAH:

he was a beautiful baby boy.

VIKKI:

and is!

JANNAH:

People think it's a small thing, but it's not because you know,

JANNAH:

it stays with people forever for life.

JANNAH:

And like I said, every time I remember that moment, it still makes me sad.

JANNAH:

It makes me sad that's all that the doctor saw in him that that morning was his

JANNAH:

slanted eyes and the bridge in his nose.

VIKKI:

Yeah.

VIKKI:

I mean, gosh, there's so much to unpack here.

VIKKI:

I mean, first of all, I'll put a link to your lovely social feeds.

VIKKI:

And the first thing you'll pick up on when you look at them

VIKKI:

is what a gorgeous boy he is.

VIKKI:

He's beautiful!

VIKKI:

just the words that the doctor used in that time, I mean, I can imagine,

VIKKI:

you know, obviously in the N.H.S.

VIKKI:

and we don't want to bash doctors and nurses because they do incredible work,

VIKKI:

but my goodness, what a choice of words.

VIKKI:

And the fact that he said, "I'm terribly sorry", you know, yes, Musa

VIKKI:

has conditions and impairments, but that is not the only part of who he is.

VIKKI:

It's one of the many factors that make up that beautiful boy.

VIKKI:

And just putting it as, I'm terribly sorry, as if it's like a, a death sentence

VIKKI:

or a life sentence is, is disgraceful and words really, really matter.

VIKKI:

It just makes me so angry.

VIKKI:

Makes me so angry.

VIKKI:

And I will put into the show notes the details of an incredible lady

VIKKI:

that I've also connected with on Instagram, who spends her time

VIKKI:

putting together little packs.

VIKKI:

I wish I could remember her name right now.

VIKKI:

But she puts together little sort of mini suitcases for parents and mums

VIKKI:

especially to go into hospital who have just received the diagnosis for their

VIKKI:

baby to sort of offer them hope and say "This is the support you will need.

VIKKI:

These are some of the challenges you may be facing in the days,

VIKKI:

weeks, months, years to come.

VIKKI:

But also to say it's okay.

VIKKI:

You know that that living with a child who has Downs, you know, can

VIKKI:

be such a joyful, wonderful gift."

VIKKI:

And all babies are gifts.

VIKKI:

All babies are gifts.

JANNAH:

And also that, you know, um, I, I also do get like, you know, a lot of

JANNAH:

mums that are, have had a new diagnosis and are struggling, will always, um,

JANNAH:

I'll get, I've had a few messages where people have said, you know, " You're

JANNAH:

so grateful for him being in your life.

JANNAH:

And you show it in in your videos and your posts and, you know, you're so positive

JANNAH:

about even the things that he can't do.

JANNAH:

You're so positive about it, you know, but I can't seem to find that, I'm not there."

JANNAH:

And I just wish that people would know that, you know, you don't have to, it's

JANNAH:

not a race to be accepting or see the positive side of your child's disability.

JANNAH:

It's not a race.

JANNAH:

You don't have to do it at a certain time.

JANNAH:

You know, we're all different.

JANNAH:

We all see life differently- some of us are moulded by our faith, which gives

JANNAH:

us hope and we see it through that way.

JANNAH:

Some people are moulded by positivity around them, their family members,

JANNAH:

you know, we all are different.

JANNAH:

So find your peace at your time and you will, you will get there.

JANNAH:

As a mum of a child with a disability, you will get there.

JANNAH:

You will feel that strength and it will come to you.

JANNAH:

But also don't deprive yourself of that time where you just wanna be sad.

JANNAH:

You know?

JANNAH:

Even now I have days where I just wanna be sad about something.

JANNAH:

It might be anything- I might hear a child call his mum "Mum" outside in the

JANNAH:

supermarket and I might wanna spend a day being just sad that I don't get to hear

JANNAH:

that from Musa because he can't talk.

JANNAH:

So give yourself time to grieve because you know, we don't have

JANNAH:

to deprive ourselves from that.

JANNAH:

And that's another thing society does to women.

JANNAH:

It's just like they want us to just get on with it and show a brave face, but

JANNAH:

we don't have to be brave all the time.

JANNAH:

You know, we can be falling apart and that's okay as well.

JANNAH:

Cause we can pick ourselves up again slowly.

JANNAH:

We will.

JANNAH:

And in our own time, we don't have to do it.

JANNAH:

Nobody has to do it because they see me being positive.

JANNAH:

I've had my times, I've had my time when Musa was little and I've cried all day.

JANNAH:

I haven't left the house for weeks sometimes because I've just been so upset

JANNAH:

and so sad that, you know, my life is, has changed so much, and I've got all these

JANNAH:

things to carry with me when I go outside.

JANNAH:

But, you know, five years later, I'm a different person now.

JANNAH:

But I have lived that grief, you know, it's still there.

JANNAH:

And I had to go through it to become who I am today.

JANNAH:

And I never would've been who I am today if I didn't go through that.

JANNAH:

So it's like when people look at Musa and they think, you know, like I've

JANNAH:

been told he's, he's a burden for me.

JANNAH:

But I just think to myself, I'm actually not the person I was five

JANNAH:

years ago before Musa was born.

JANNAH:

And I, you know, I can hold my hand on my heart and say that I've

JANNAH:

always been kind and empathetic.

JANNAH:

But Musa came and kind of developed that.

JANNAH:

He made me kinder, he made me more empathetic.

JANNAH:

You know, before, I'd walk down the street and I'd never notice probably

JANNAH:

a child in a wheelchair or a child with a feeding tube stuck on his

JANNAH:

face or, you know, even anything, I wouldn't notice things because it

JANNAH:

was something that was in my life.

JANNAH:

But now because of Musa, because of what I've been shown through his life, I even

JANNAH:

see backpacks and I straight away know, "Oh my God, that mum's got a feeding

JANNAH:

tube, that mum's got a feeding pump."

JANNAH:

And I'll go that way on purpose just to say hello, just to say,

JANNAH:

"Oh, wow, we have that, we have that feeding pump, we have that bag."

JANNAH:

Just because, you know, he's brought that out of me.

JANNAH:

I wouldn't have done this if, if he wasn't in my life.

JANNAH:

People don't realise that as much as there are challenges and there are hard

JANNAH:

days, you know the reward is much greater because it's who it moulds you into.

JANNAH:

It's like, I was so worried about the older two when he was first born

JANNAH:

because I thought, "Oh, you know, their life's gonna be a disaster

JANNAH:

or they're never gonna do things.

JANNAH:

Or they're also gonna be stuck in hospital.

JANNAH:

I'm never gonna be able to be there for them at times that they

JANNAH:

need me, because I'm always gonna be doing things and be busy."

JANNAH:

But it's moulded them into different people.

JANNAH:

It's like my daughter, I overheard her when she was leaving school and

JANNAH:

she had a meeting with college.

JANNAH:

And I was in the kitchen and she was having her interview for college,

JANNAH:

and the lady asked her about " why have you chosen to do this course?

JANNAH:

What do you hope to achieve from it?"

JANNAH:

And she said, "Oh, um, well, by the way, I've got a little brother and he

JANNAH:

is four years old and he's got Down Syndrome and he's got hearing loss.

JANNAH:

And eventually when I finish uni, I want to become a speech and language therapist

JANNAH:

because I wanna help other families that are like our family, who have someone in

JANNAH:

their life who's um, struggling to speak."

JANNAH:

And I just thought to myself, you know, this is what I mean, that

JANNAH:

these children come and mould people in their lives to actually

JANNAH:

be the best version of themselves.

JANNAH:

Would my daughter ever think to do something like that and

JANNAH:

contribute to society in such a way if Musa wasn't her role model?

JANNAH:

So I refuse to see that as a burden because a burden

JANNAH:

doesn't make things better.

JANNAH:

A burden makes things worse.

JANNAH:

So, um, no, he's not a burden actually.

JANNAH:

He is what makes our family and us as a family go out into the

JANNAH:

world and give the world more than we were ever giving before.

VIKKI:

Oh my goodness.

VIKKI:

Uh, You must be so proud of your daughter as well.

JANNAH:

I am, I'm so proud of her, I'm so proud of her.

JANNAH:

Even my son, it's like, you know, people see me and they think, oh wow.

JANNAH:

It's like, you know, because recently, I have been sharing my journey of my

JANNAH:

weight loss and my walking and my running.

JANNAH:

And I'll always get mums saying, "Oh, you know, where do you get the time?"

JANNAH:

And, you know, "How do you do it around Musa and everything?"

JANNAH:

And it's, you know, I always say a big part of my self-care and how much time I'm

JANNAH:

able to give to myself are my older two.

JANNAH:

And if it wasn't for them, I'd be lost.

JANNAH:

Because, you know, at that time when I remember when Musa was born I thought,

JANNAH:

you know, maybe this was a wrong time to have a child, another one, because

JANNAH:

they, they've grown up now and he's gonna be so little, and now we're

JANNAH:

stuck with a disability as well.

JANNAH:

And it's just gonna be hard on them and they're never

JANNAH:

gonna bond with him properly.

JANNAH:

But it's totally the opposite because if it actually, if it wasn't for

JANNAH:

them in my life, I would struggle more now because, because I've

JANNAH:

got them, they're like my hands.

JANNAH:

And you know, it's like, if I wake up one day and I'm not in the mood

JANNAH:

to go for a run, and I remember last weekend I woke up and I was saying

JANNAH:

to my son, "I just don't feel like going for a run today, but I should.

JANNAH:

But I just, I just can't get into the mood of it.

JANNAH:

And he's like, mom, just put your shoes on and just, just get out there for a bit.

JANNAH:

Even if you don't run, just go get some fresh air.

JANNAH:

I've got him.

JANNAH:

And just go."

JANNAH:

And I remember I did and had a nice run and came back and

JANNAH:

I just felt so much refreshed.

JANNAH:

But that's the thing though, it's like they're older and they're

JANNAH:

understanding and it's actually worked out perfect for me.

JANNAH:

Whereas when he was first born, I couldn't see this side of it.

JANNAH:

All I could see was, "Oh my God, life is gonna be traumatic."

JANNAH:

But life isn't.

JANNAH:

Life has hard days, I'm not gonna lie about that.

JANNAH:

You know, life has hard days when he gets poorly and he ends up in hospital

JANNAH:

and we're in hospital for days.

JANNAH:

But life also has happy moments as well where we just catch up on a movie

JANNAH:

together and sit and laugh together.

JANNAH:

Those things haven't changed.

JANNAH:

We still do that.

JANNAH:

But yeah, we have Musa and we have his feeding tube and hooked on him and he's

JANNAH:

there with us and it's, you know, people, they almost think that our life is not

JANNAH:

normal because they think that he's not normal, but our life is very much normal.

JANNAH:

You know?

JANNAH:

You'd be surprised if you walked into it.

VIKKI:

What is 'normal' anyway?

VIKKI:

But wow, again, so many things that I really want to pick up on.

VIKKI:

So I've, I've just started working with the incredible Shani Dhanda, who

VIKKI:

is just such a, an inspiring woman.

VIKKI:

And she's been educating me about the social model of disability, which is

VIKKI:

that, you know, our conditions and impairments aren't what disable us.

VIKKI:

It's the society, how inaccessible society is.

VIKKI:

And, uh, that makes me really think about, you know, I hate this use of

VIKKI:

the word burden and, and how sort of negative it was from the very first

VIKKI:

words that that doctor ushered to you.

VIKKI:

The other thing is how wonderful, what beautiful teenagers you have

VIKKI:

because they are so selfless and you know, there's always this

VIKKI:

perpetuation that teenagers are lazy.

VIKKI:

Teenagers only think about themselves.

VIKKI:

They're very self-indulgent.

VIKKI:

Actually that's bollocks.

VIKKI:

And you know, especially with your, your son and your daughter, who you must so

VIKKI:

proud of that, having Musa in their life has encouraged them to be so caring.

VIKKI:

And, you know, I'm, I'm sure that they were brought up to be that way anyway,

VIKKI:

but how wonderful for them to have that relationship with their brother.

JANNAH:

Yeah.

JANNAH:

And, you know, you just think that's what they're going to go into

JANNAH:

the society with, those values.

JANNAH:

But in a way, um, I don't take credit for it because it has

JANNAH:

been shown to them by Musa.

JANNAH:

So I feel like that is his credit, that he has shown them that.

JANNAH:

So even like when we're outside now, I remember once me and my son, we were in

JANNAH:

the library and then he came up to me and he said, "Mum, look, there's a boy.

JANNAH:

And he's got a feeding tube.

JANNAH:

Look, he's got that, he's carrying that bag."

JANNAH:

And then I said, "Oh yeah, let's go and find his mum and say hello."

JANNAH:

So it's like even they know now and they know to look out for children

JANNAH:

that have got a disability - you know, it's, it's almost like we're so excited

JANNAH:

to see them, like, you know, "Yeah.

JANNAH:

Wow.

JANNAH:

Someone else like us, another family like us."

JANNAH:

It's nice to see that, and this is what I mean, that this is who

JANNAH:

they are going out into society with what they've been taught.

JANNAH:

Such a great lesson that they've been taught.

JANNAH:

But, you know, it's a five year old boy that has moulded us into

JANNAH:

these humans that we've become.

JANNAH:

And I'm so, so proud of Musa and nobody, and nothing that anybody

JANNAH:

says is ever gonna make that any less because he is just an

JANNAH:

amazing and incredible human being.

JANNAH:

You know, at five years old, he is teaching the world about inclusion

JANNAH:

and accepting of people who are different, you know, I couldn't

JANNAH:

be more prouder to be his mum.

JANNAH:

And it's like you were saying about, you know, it's not our

JANNAH:

disabilities, it's, you know, society and there's hardly any thought of

JANNAH:

how people are gonna access places.

JANNAH:

So it's like even thoughts of going into parks, it's not a child who's

JANNAH:

got a disability, his fault for having his disability that he can't play

JANNAH:

in the park if the park has not been developed for everybody to play in there.

JANNAH:

So if there's only things that able people can join in and play in an park, then

JANNAH:

that isn't the fault of his disability.

JANNAH:

That is the fault of us - society is making it difficult for

JANNAH:

everybody to be included.

JANNAH:

Whether we have a disability or not, it doesn't even matter.

JANNAH:

We all want to be included.

JANNAH:

We all as human beings, we just want to be loved, accepted, and included.

JANNAH:

And that's no different to a person with a disability and

JANNAH:

a person without a disability.

JANNAH:

Those are the things that we want and need to feel valued.

VIKKI:

Yeah.

VIKKI:

And it's a fundamental human right, you know and this is the thing

VIKKI:

that is so hard to understand that making things accessible to

VIKKI:

everybody doesn't harm anybody.

VIKKI:

It just makes things better for everybody.

VIKKI:

And why aren't all children's playgrounds being designed and developed so that

VIKKI:

they can be accessed with, you know, anyone, no matter what condition or

VIKKI:

impairment they have, that there is something that they will get, you know,

VIKKI:

a playground's a joy for children, so why don't you make them accessible?

VIKKI:

One in five people have a disability.

VIKKI:

One in five- that is not a minority, that is 20% of our population.

VIKKI:

So why aren't things being made accessible for everybody?

VIKKI:

For that 20%, that 20% should be valued as much as the rest.

VIKKI:

You know, disabled people are so resilient, resourceful,

VIKKI:

they have so much to offer.

JANNAH:

Yeah.

JANNAH:

I was talking to someone the other day and I was just saying that, you know,

JANNAH:

people just, as soon as they hear that, you know, even with Musa, as soon as they

JANNAH:

hear he's got a disability, they kind of, straight away they give up on people.

JANNAH:

So even like with Musa, when I'm out and about with him, and you know,

JANNAH:

people, when they hear that he's got hearing loss and he's nonverbal,

JANNAH:

they won't talk to him anymore.

JANNAH:

It'd be like, they'll ask me "Oh what's his name?"

JANNAH:

Or "What does he like doing?

JANNAH:

Can he do that?"

JANNAH:

But it's like, you know, even though he can't talk, he loves to be spoken to.

JANNAH:

So, um, I always say to people, "No, say hello to him.

JANNAH:

You know, you can ask him how he is.

JANNAH:

He will sign to you and say he's good."

JANNAH:

You know, if anything, you might learn a few signs,

JANNAH:

um,

JANNAH:

while you communicate with him.

JANNAH:

So, you know, again, you stop including people for things that you think are

JANNAH:

small, but they're not small to people.

JANNAH:

Because how would we feel if, just because I lost my voice, if now

JANNAH:

every time I went outside, people didn't talk to me anymore.

JANNAH:

Instead they spoke to the person I was with and said, "Oh, how is she?"

JANNAH:

I'd like to be asked, "How are you?"

JANNAH:

So that I can say "I'm good."

JANNAH:

We all wanna do that.

JANNAH:

So I think that's another thing is that people hear disability and they just

JANNAH:

straight away think, "Right, well, there's no point in talking to this person because

JANNAH:

they won't be able to do anything."

JANNAH:

But it's amazing, when you do involve people- regardless of whether they've

JANNAH:

got disability or not- you'll be amazed how much they can contribute.

JANNAH:

You know, Musa amazes me when he's out and about, In the summer.

JANNAH:

I remember we went to a park and there was this big slide thing where you have

JANNAH:

to climb the stairs and then there's another kinda net thing that you have

JANNAH:

to climb a pass to get onto the slide.

JANNAH:

And I remember seeing it and I was trying to not let him go on it, because

JANNAH:

I just thought, I was saying to my daughter, "Don't let him go there

JANNAH:

because he won't be able to do that.

JANNAH:

He'll go then he'll get stuck.

JANNAH:

And the other kids, they look a lot older and he'll get trampled over."

JANNAH:

But he was so adamant he wanted to try that.

JANNAH:

So then I thought, "Right, just let him try it."

JANNAH:

So then he went and then when he got to the net part, I thought, "I'm just gonna

JANNAH:

stand back and see what he actually does.

JANNAH:

He might just come back because he can't do it."

JANNAH:

But Musa tries everything.

JANNAH:

He stopped there for a minute and he looked at it and he just tried

JANNAH:

to get everything in his head thinking like, "What can I do here?

JANNAH:

I can't walk because my legs aren't strong enough."

JANNAH:

But what he did was he crawled it, the net part.

JANNAH:

Instead of walking on it, he crawled it and then he, he went to the top of

JANNAH:

the slide and as soon as he got under the top of the slide, he did this to

JANNAH:

himself because he knew he accomplished.

JANNAH:

So he did his thumbs up because he knew that "I did that, it was hard.

JANNAH:

It was hard as hell, but I did it and I'm here now.

JANNAH:

I'm going down this slide."

JANNAH:

And, you know, "I'm absolutely amazing."

JANNAH:

And he is!

JANNAH:

I was in tears because I thought to myself, "Wow, I actually did not think

JANNAH:

that he would be able to, to do that.

JANNAH:

But he perseveres and finds ways of entertaining himself and doing things.

JANNAH:

So his life isn't miserable because of his disability.

JANNAH:

It's just that he is different.

JANNAH:

He might have to find different ways to do things that a child that doesn't

JANNAH:

have a disability could just go and do.

JANNAH:

But it's not miserable because he still does those things but

JANNAH:

may not do it like that child.

JANNAH:

But he's doing it differently and you know, it is nice to be different.

JANNAH:

It's nice to see people doing things differently.

JANNAH:

Sometimes you may wanna do it like that as well, because I remember after

JANNAH:

he did that a few times there was another child who'd walked the net.

JANNAH:

He started doing that as well, crawling it, because he thought,

JANNAH:

"Oh, I wanna do it like that!"

VIKKI:

That looks cool!

JANNAH:

So yeah, that's what people don't realise is that you

JANNAH:

don't have to feel sorry for them, that their life is miserable.

JANNAH:

Their life isn't miserable.

JANNAH:

We've all got hard days, you know?

JANNAH:

It doesn't matter whether we've got a disability or not, we all have days

JANNAH:

where we just wanna crawl in bed and have a good cry before we go to bed.

JANNAH:

But similar to that, their life has days where it's hard but not miserable.

JANNAH:

Our life is still very much full of love and happiness.

VIKKI:

I think that's so important for people to hear, you know, who may be

VIKKI:

facing a diagnosis, perhaps during their pregnancy or perhaps after giving birth,

VIKKI:

who really need to hear that right now.

VIKKI:

If you don't mind just going back to the time of the birth, Jannah,

VIKKI:

what support was there for you?

VIKKI:

Because it sounded like you had a horrific birth, you know,

VIKKI:

irrespective of Musa's conditions.

VIKKI:

How were you supported in terms of what happened to you during that labour?

JANNAH:

From the birth to when he was about 10 months, I'd say

JANNAH:

it was the worst time of my life.

JANNAH:

After the birth, obviously.

JANNAH:

I was told about his diagnosis, so everything that had happened in that last

JANNAH:

12 hours kind of like just got forgotten for everyone else because now everyone

JANNAH:

was concentrating on "Oh my God, this child has got something and we need to

JANNAH:

figure out what's going on with him."

JANNAH:

So straight away, everything that I'd gone through was kind of, for everyone

JANNAH:

else, was forgotten, obviously not for me.

JANNAH:

I was still processing what actually has just happened.

JANNAH:

Yesterday at this time I was sat in the cafe, having a chat with

JANNAH:

my friends, getting excited for my birth and giving birth to my baby.

JANNAH:

And you know what, what just happened now?

JANNAH:

I got rushed into hospital and Obviously I had to have an emergency

JANNAH:

C-Section and I, um, it's just all that's going on and, you know, I'm

JANNAH:

not feeling well in myself, but I've got this baby to care for now as well.

VIKKI:

I'm so sorry to interrupt -and please say if you're not comfortable to

VIKKI:

talk about any of this- I can't imagine how traumatic it must have been to hear

VIKKI:

that your baby may not have survived.

JANNAH:

Yeah.

JANNAH:

Yeah, and that's the whole thing.

JANNAH:

It's like when I went in and they couldn't find his heartbeat, they put me

JANNAH:

on the monitor and then it was nothing.

JANNAH:

And then I remember the nurses, their faces just dropped and I was

JANNAH:

like, "Is everything all right?"

JANNAH:

And she's just like, "Oh, I'm just gonna have to go and call the doctor."

JANNAH:

And then she rushed back to the doctor and then he said, " We're just gonna

JANNAH:

have to, um, break your waters and we are gonna have to try and get the

JANNAH:

baby's heartbeat through his head, by um, sticking something on his head.

JANNAH:

and then they did that.

JANNAH:

And again, there was nothing.

JANNAH:

So basically it was just like, "Right, we're gonna have to go

JANNAH:

in for an emergency C-section.

JANNAH:

So everything was so rushed.

JANNAH:

And then obviously I I got, smacked with this diagnosis as well.

JANNAH:

I'm not exaggerating when I say I got left to deal and

JANNAH:

pick up the pieces, on my own.

JANNAH:

I felt like nothing was explained to me in a way that I could understand,

JANNAH:

um, looking back like, for instance , Musa was difficult to feed.

JANNAH:

Now we know it was because of low muscle tone because he has a lot

JANNAH:

of low muscle tone around his mouth area, hence why he's struggling to

JANNAH:

speak because of the low muscle tone.

JANNAH:

But because of all that going on around his mouth muscles, it's not,

JANNAH:

he didn't want to, but he could not suck on a bottle or the breast so he

JANNAH:

could not suck to keep himself alive.

JANNAH:

Um, but it didn't get picked up on because basically the nurses that would come

JANNAH:

in the room and say, "You can't go home till he's on 30 mls an hour of milk."

JANNAH:

And now, at that time, because he was a newborn and he was sleeping a

JANNAH:

lot, it was easier to, when he was asleep, he would just kind of like,

JANNAH:

you know, suck while he was asleep.

JANNAH:

So I was able to get a little bit in him.

JANNAH:

But I remember one of the nurses that said to me that if he's not getting

JANNAH:

the right amount of feed, we'll have to put a tube in him to get his feed in.

JANNAH:

Now, looking back, nobody explained to me what this tube was gonna be.

JANNAH:

Nobody said how this tube was gonna go in him and how that he'd

JANNAH:

be able to feed from that tube.

JANNAH:

All I heard was that "They're gonna put a tube in him.

JANNAH:

Oh, I better just try and feed him as much as I can.

JANNAH:

I better just, um, try and even syringe the feed in his mouth if it helps, because

JANNAH:

I don't want him to have this tube.

JANNAH:

I don't know what this tube is they're talking about."

JANNAH:

The fear of what this thing is.

JANNAH:

If only somebody had come and sat down, brought a tube and

JANNAH:

said, "Look, this is what it is.

JANNAH:

It's nothing invasive.

JANNAH:

All it's gonna do is go in his nose and down into his belly.

JANNAH:

If he, if he's not able to have enough milk, this will help

JANNAH:

him get enough milk for now.

JANNAH:

And you will work with the dieticians to either wean him

JANNAH:

off that or go to the next steps.

JANNAH:

But we will talk you through that."

JANNAH:

Nobody explained anything to me.

JANNAH:

All I was told is that "If he doesn't drink his milk,

JANNAH:

he will end up with a tube."

JANNAH:

And all I heard was that and it freaked me out.

JANNAH:

But then I was kind of like forcing him to have his milk while he was

JANNAH:

asleep, or syringing it in his mouth.

JANNAH:

And then eventually when he got to 30mls, they did discharge us, because

JANNAH:

they assumed he was having 30 mls, but it wasn't that he was drinking it, I

JANNAH:

was sometimes syringing it in his mouth.

JANNAH:

Now, when he came home again, we were forgotten, Musa got forgotten

JANNAH:

that he had Down Syndrome.

JANNAH:

So when I was taking him to get weighed every two weeks they'd

JANNAH:

forget he's got Down Syndrome.

JANNAH:

So every time I'd go, I'd have to repeat the same thing again.

JANNAH:

So they'd weigh him and they'd say, "Oh, he's not putting on enough weight"

JANNAH:

or " he's too small for his age.

JANNAH:

And, and then I'd have to remind them that, "Oh, well, he's got a

JANNAH:

different chart though, because he's got Down Syndrome and

JANNAH:

he's not weighed by that chart.

JANNAH:

He's weighed by a chart that's specifically for

JANNAH:

babies with Down Syndrome."

JANNAH:

And then they'd be like, "Alright, has he got Down Syndrome?

JANNAH:

All right, we didn't know that."

JANNAH:

And then I'd have to continuously repeat myself.

VIKKI:

Oh, how exhausting for you to have to keep doing that.

JANNAH:

Yeah.

JANNAH:

I was so exhausted.

JANNAH:

I was so, so exhausted.

JANNAH:

I wasn't changing my clothes.

JANNAH:

I wasn't having a shower.

JANNAH:

I was just in a really bad place.

JANNAH:

And then, after a while he kinda like stopped even drinking that milk

JANNAH:

while he was asleep now because he just couldn't, I think his muscles

JANNAH:

got so weak that he couldn't even do it while he was asleep anymore.

JANNAH:

So it was becoming harder and harder for me to get any milk in him.

JANNAH:

So then that's when I started going to the doctors and saying, you know,

JANNAH:

" I'm struggling, I can't do this.

JANNAH:

I'm struggling.

JANNAH:

He won't drink his milk."

JANNAH:

but because I was syringing milk in him, he was staying hydrated.

JANNAH:

So they just touched the top of his head and say, "Oh, he looks hydrated,

JANNAH:

he's fine mum, don't worry about it.

JANNAH:

Some babies just drink less milk."

JANNAH:

And they'd send me back on my way.

JANNAH:

And then it got to a point where I went to weigh him once.

JANNAH:

And, um, the lady who was weighing him, and she said, "Oh, he's

JANNAH:

dropped like two centiles.

JANNAH:

What's happened, mum?"

JANNAH:

And then she started saying things like, you know, " It looks like we're

JANNAH:

gonna have to get him some help.

JANNAH:

We're gonna have to refer you to social services" or something like that.

VIKKI:

What?!

JANNAH:

That's when I, um, got really, really upset and I said,

JANNAH:

"Listen, I've been coming here every single week to weigh him, because I'm

JANNAH:

coming here and saying "I need help.

JANNAH:

He's not drinking his milk."

VIKKI:

You're not being listened to.

JANNAH:

I said, "nobody's listening to me, and you keep, and now you're

JANNAH:

telling me that you're gonna get, so I said, I want you, I want you to get

JANNAH:

someone, because actually I need help.

JANNAH:

He's not drinking his milk.

JANNAH:

And this is not normal.

JANNAH:

I don't think it's a normal, he's not drinking anything, actually."

JANNAH:

"And the only way I'm keeping him hydrated is by syringing milk in his mouth.

JANNAH:

That can't be right.

JANNAH:

No one should have to do this.

JANNAH:

I'm syringing 20mls every half an hour all throughout the day and night.

JANNAH:

I've got no life.

JANNAH:

I'm not doing anything else."

VIKKI:

My God.

VIKKI:

What pressure on you!

JANNAH:

"I'm not I'm not sleeping, I'm not doing nothing.

JANNAH:

All I'm doing is, I'm walking around with a bottle of milk and a syringe in my hand.

JANNAH:

This is not normal.

JANNAH:

Somebody tell me that this is normal because it's not normal."

JANNAH:

And that's when she said, "Right, I'm gonna have to get you some help."

JANNAH:

So she got me, you know, a dietician.

JANNAH:

But then even that, there was like a six week wait for that dietician.

VIKKI:

Oh my God, that's, that's like forever when you've got a newborn at home!

JANNAH:

Yeah, yeah- to get an appointment.

JANNAH:

And I remember then what happened was, um, there was a

JANNAH:

new group opening, in our area.

JANNAH:

It's a mum and her little boy, he had a rare condition and passed away.

JANNAH:

It's called Jolly Josh.

JANNAH:

It was their first opening session they were opening and it was for

JANNAH:

like mums with children who've got disabilities to go and, you know,

JANNAH:

catch up, get a cup of coffee.

VIKKI:

That sounds brilliant.

JANNAH:

There'd be nurses there and people like that, that could

JANNAH:

help you if you're having trouble.

JANNAH:

And I remember that leaflet was on the floor and it was in the house.

JANNAH:

And, I was on my own.

JANNAH:

There was me and Musa.

JANNAH:

He hadn't drank anything for, I think it was 12 hours that day.

JANNAH:

He hadn't drank any milk.

JANNAH:

I couldn't get him to have any milk.

JANNAH:

The bits that I did syringe, he'd puked out and I was just in a really bad way.

JANNAH:

I was, I'd hit rock bottom by then.

JANNAH:

I was crying.

JANNAH:

my clothes had sick on them.

JANNAH:

I hadn't had a shower in days and I just hadn't slept.

JANNAH:

I was tired, exhausted.

JANNAH:

I just, I, I actually felt suicidal.

JANNAH:

I just felt like the only way I thought, the only way forward for me

JANNAH:

then I thought was not living this life because I just thought, I'm not

JANNAH:

doing a good job here and I can't see a future for me doing keep doing this.

JANNAH:

I just can't do it.

JANNAH:

So, um, just remember feeling really bad and then I thought,

JANNAH:

I saw that leaflet on the floor and I thought, "Do you know what?

JANNAH:

I should just go there because I'm just feeling really, really bad

JANNAH:

right now and I'm in a really bad place and I shouldn't be on my own."

JANNAH:

And I don't know what forced me, but I just got out and I

JANNAH:

remember it was raining, it was chucking it down with rain.

JANNAH:

I didn't put a coat on or anything.

JANNAH:

I just got him, put him in the car seat.

JANNAH:

Got in the car and I don't even know how I drove there.

JANNAH:

And I just went there, just dumped my car.

JANNAH:

I don't even know where I dumped him in front of someone's car.

JANNAH:

And I just grabbed his car seat and I walked into the centre.

JANNAH:

And as soon as I walked in, I remember Carol, um, she's the mom whose little

JANNAH:

boy passed, who's organised this group and it's absolutely amazing group.

JANNAH:

They've recently expanded and gone to a place and it's absolutely amazing.

VIKKI:

I'll put a link in the show notes.

JANNAH:

Um, and Carol, I remember the first thing I saw was her.

JANNAH:

She turned around and she had a really big smile on her face, and she walked up

JANNAH:

to me and said, "Oh, hello, I'm Carol.

JANNAH:

Um, how are you?"

JANNAH:

And as soon as she said that, I burst into tears.

JANNAH:

I burst into tears and I said," I need help.

JANNAH:

I need someone to help me.

JANNAH:

I'm not okay."

JANNAH:

And then Carol just, she, she, she grabbed hold of me and she

JANNAH:

said, "You're in the right place.

JANNAH:

Um, we're gonna get you all the help you need.

JANNAH:

That's the reason why we're here."

JANNAH:

And it was from there.

JANNAH:

And that's the reason why as well, that Jolly Josh is the group.

JANNAH:

Um, we do fundraising for them, you know, because it's just like they have such

JANNAH:

a special part of our heart because of.

JANNAH:

The support they gave me at a time where I couldn't see a way out, you know?

JANNAH:

And so there was, she took me and we sat down, she got me a coffee,

JANNAH:

and then she said, "Oh, here's Anna, one of the head nurses.

JANNAH:

Tell her what's happening and she's gonna help you.

JANNAH:

And I just said, I just said, "I don't wanna talk, I just, I keep telling

JANNAH:

people my story and no one's helping me.

JANNAH:

No one does anything about it.

JANNAH:

I keep telling people and nothing gets done.

JANNAH:

And then Anna, the nurse, she said, listen, Jannah, you are gonna tell

JANNAH:

me your story now, and I promise you this is the last time you are

JANNAH:

gonna have to tell anybody what's happening with you because you're

JANNAH:

gonna actually get the help you need.

JANNAH:

So you're not gonna have to go and tell anyone anything anymore."

JANNAH:

And I told her, I said, "look, he's, the last time I've been able to feed

JANNAH:

him was at 12 hours ago, and I showed her the diary of what I was feeding him,

JANNAH:

like 20mls every, every half an hour.

JANNAH:

And then she was like, "You shouldn't have to do this.

JANNAH:

This is not normal.

JANNAH:

None of this is normal."

VIKKI:

Oh Oh my goodness - how amazing!

JANNAH:

Um "I'm coming to your house tomorrow with a dietician.

JANNAH:

You don't have to wait for the dietician.

JANNAH:

I'm bringing the dietician to your house.

JANNAH:

And he's gonna get assessed tomorrow and we'll go forward from there.

JANNAH:

And then the next morning she came with the dietician.

JANNAH:

And the dietician, she bought the feeding tube, the one that I got

JANNAH:

told before and got freaked out.

JANNAH:

And then she sat and she brought a doll and she showed me, she

JANNAH:

put it through the doll, said, look, "This is all it is, Jannah.

JANNAH:

It's just, it's gonna go through his nose.

JANNAH:

It ends up in his tummy, it's nothing invasive.

JANNAH:

It's not gonna need to go into hospital for it.

JANNAH:

And you just get to put the milk down his tube, you know."

JANNAH:

and he can have it."

VIKKI:

So you are informed.

VIKKI:

That's all you needed.

VIKKI:

Yeah.

VIKKI:

And then I looked at it.

VIKKI:

Then I thought to myself, "Wow."

VIKKI:

I didn't know what it was.

VIKKI:

All I got told was he's gonna end up with a tube.

VIKKI:

And I...

VIKKI:

having to fight that, I was thinking I need to take things

VIKKI:

in my own hand and do things.

VIKKI:

And then he did, he ended up getting the tube in his nose and

VIKKI:

life just changed overnight.

VIKKI:

I ended up getting nine hours of sleep that night because I didn't have to

VIKKI:

wake up and feed him because during the day, I just hooked him on his

VIKKI:

feed and the pump was feeding him.

VIKKI:

And it was just like, I couldn't believe that this simple thing

VIKKI:

came into my life and it brought so much relief, like, "wow", you know.

VIKKI:

And that's the reason why, going back to when I was told at the hospital, if

VIKKI:

only things are explained a little bit more, I think parents would be less

VIKKI:

scared of being put into a situation because they'd know what it is.

VIKKI:

So instead of just saying, "Oh, if he does not drink his

VIKKI:

milk, he's gonna need a tube."

VIKKI:

A tube can be anything- where is it gonna be?

VIKKI:

Are they gonna have to take him into the operating theater and do something to him?

VIKKI:

You know, if only it was explained at the time that this is all it is,

VIKKI:

it's a little tube and it's just gonna go in his nose and ends up

VIKKI:

down his throat and in his belly.

JANNAH:

If it comes out, we pop it back in and that's all it is.

JANNAH:

When people don't know they're scared, when they don't know.

VIKKI:

Yeah.

VIKKI:

And, and also just think, you know, you had been through a huge trauma yourself.

VIKKI:

Um, I'm just conscious of time and you need to give that boy cuddles.

VIKKI:

So, we'll wrap things up, but yeah, just being informed so that

VIKKI:

you can make decisions based on facts rather than your fear of you

VIKKI:

know, what it may or may not mean.

VIKKI:

Um, could I just ask, are you Muslim?

JANNAH:

Yes.

VIKKI:

Because, yeah, I saw the Eid Mubarak things.

VIKKI:

Was there anything like, you know, how, does your culture perceive disability

VIKKI:

or having children with disabilities?

VIKKI:

Was there anything there that you had to

JANNAH:

Um,

VIKKI:

adapt?

JANNAH:

Yeah.

JANNAH:

Um, if people don't look at it through the eyes of our religion.

JANNAH:

Um, that's where the problem is.

JANNAH:

That if they did look at it through the eyes of our faith, they'd realise

JANNAH:

that actually our faith teaches us that God makes human beings in different

JANNAH:

forms - different languages, different forms, different colors, and we show

JANNAH:

empathy and love and just live in a happy world together with people

JANNAH:

regardless of how different they might be.

JANNAH:

But we don't, society sees it in its own negative way, if you get what I mean.

JANNAH:

So even though, the religion shows a good side of it, um, people, like

JANNAH:

I said, view him as he's a burden.

JANNAH:

And I do, I do get, you know, people quite shocked sometimes because I blog

JANNAH:

about his life and we share our journey.

JANNAH:

Um, I do get people shocked when they come across our videos, like, you know,

JANNAH:

um, they expect him to be hidden away.

JANNAH:

They expect him to be hidden and not be shown to the world because "Is

JANNAH:

it an embarrassment that, you know, you've ended up with a child like that?

JANNAH:

Is it a punishment that you've ended up with a child like that?"

JANNAH:

But I refuse to do that because I want the world to see Musa and I want the

JANNAH:

world to learn from his life that, you know, he's a human being and regardless

JANNAH:

of how different he is, there's a place for him and his peers and people

JANNAH:

that are like him in this world, and they don't have to be anything.

JANNAH:

They don't have to be like anybody to have that place in this world because

JANNAH:

they have a place in this world to live and it doesn't matter, um, how

JANNAH:

little they may contribute to society.

JANNAH:

That doesn't matter.

JANNAH:

People forget that our contributing to society isn't

JANNAH:

just going out there and working.

JANNAH:

Our contributing to society is also, it's like what we mould other people into.

VIKKI:

You've just summed that up so beautifully uh, yeah, I think

VIKKI:

Musa is now overdue a big cuddle.

VIKKI:

I think.

VIKKI:

Yeah, he's been so good.

VIKKI:

I hope he feels better soon.

VIKKI:

And thank you so much for, for spending this time with me and, yeah.

VIKKI:

every time I see your Instagram feed I'm just like lit up, you know, He's

VIKKI:

such a, beautiful boy and what a beautiful mum you are to him and what

VIKKI:

an incredible family, you know, your other two supporting Musa like that.

VIKKI:

But yeah, what a legacy.

VIKKI:

he's had.

VIKKI:

He's only five but ---he's had such a huge impact on, on you as a family

VIKKI:

in terms of his, you know, legacy.

VIKKI:

So, uh, thank you so much.

JANNAH:

Thank you for having us here.

VIKKI:

If you've enjoyed this episode of Blue MumDays, please like and subscribe.

VIKKI:

It really does make the difference in helping other people find it,

VIKKI:

and that means helping more parents.

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