World Down Syndrome Day Special: JANNAH AND MUSA'S STORY

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

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it did kind of shake my world.

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

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

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looking at the bright side of life.

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But, unfortunately I wasn't.

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

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Syndrome when I was carrying him.

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

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

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

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"I have some terrible news".

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

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thought it was terrible.

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

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wow, how is my life gonna change?

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

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Is he gonna be able to do things?

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Is he gonna enjoy life?

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

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

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

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

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

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amazing and incredible human being.

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

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

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be more prouder to be his mum.

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

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

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times the darkest of places.

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

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struggling with parenting.

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All the stories shared here are from the heart.

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These are real conversations and may be triggering, so

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please listen with discretion.

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

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

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Thank you.

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Today's guest is Jannah.

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

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

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

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

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comes with incredible rewards.

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

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the struggles and challenges he faces each and every day.

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

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

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Hello, thank you for having us here.

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

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

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place on Tuesday, March the 21st.

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

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

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either themselves or the children.

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

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

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

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

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for so many of my listeners.

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Thank you.

JANNAH: 00:03:49

Thank you for giving us the opportunity as well.

VIKKI: 00:03:52

Oh, you're so welcome.

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

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noise, is that Musa this morning?

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Yes.

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He's off school today.

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Oh,

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today because he's not feeling great.

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He's had a really miserable night with his breathing

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oh, little man.

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Yes.

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

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

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Oh.

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

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We can reschedule.

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Yeah, yeah.

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Oh no, no.

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Don't worry about it.

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

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dolly and he's absolutely fine.

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

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

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

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really hope he's feeling okay.

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

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

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and together after a difficult night

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Oh.

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one?!

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It's a struggle.

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It's a struggle.

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

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

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

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

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

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

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person who's got everything together.

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

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

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you've got a child with a disability.

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How do you get the time to do all that?

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

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Um, instead of..."

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You never, you never!

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Yeah, you'll be surprised!

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

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

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Um, Musa's happy.

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

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

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presentable, I feel that's my choice.

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

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needs to feel threatened by.

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You'll

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

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

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know, pertinent day to be chatting.

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Isn't that disgraceful that people

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Yeah.

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like they have the right to comment?

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

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Right.

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

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then

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today!

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

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

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Oh, no wonder!"

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

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

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they end up not looking after themselves."

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

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

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

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never going to be able to do or be enough.

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

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

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image that we have to have for society.

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

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

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

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

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

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Go to the gym.

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You need to go to the gym.

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You need to look after yourself."

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

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

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You know?

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" Is something going on?

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Is she having an affair somewhere?

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

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

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

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

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It's weird, isn't it?

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

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

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

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

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

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

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

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whatever that is seen as self care.

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

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Or you feel that people are judging you.

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Yeah, always.

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

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

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You know, why is he not with you?"

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

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

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Yeah!

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

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it must have been about six weeks old.

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

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out and I thought, you know what?

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

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

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

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

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Where's your baby?"

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

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He's with his dad and his siblings".

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

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You've left him alone!"

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

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

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And why am I out on my own?

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Why have I not got this child glued to me?

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

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you don't see yourself as you anymore.

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

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

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

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

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

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

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staring at me for just one hour.

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I just wanna go outside and forget about it.

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

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Where, where is the child?

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Why's he not with you?

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Yeah.

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

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

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started drilling in the background.

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

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

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gonna be a brilliant conversation.

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

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Musa and what it's like parenting him.

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

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

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

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such a gorgeous, smiley, happy boy!

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

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

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you look like you're about 20!

JANNAH: 00:11:38

Thank you.

JANNAH: 00:11:39

Thank you!

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

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

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

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

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

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at home, being around your child.

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

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some parts of your life back again.

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

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

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they started to go off to school.

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

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

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

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

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

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

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

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

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

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did kind of shake my world.

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

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

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looking at the bright side of life.

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But, unfortunately I wasn't.

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

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Syndrome when I was carrying him.

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

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

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

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You know.

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

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him anyway, because he stopped moving.

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

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couldn't find his heartbeat.

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

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So they rushed me into theatre to get him out.

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

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He was blue, he turned blue.

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My goodness.

JANNAH: 00:14:05

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

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

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that, he basically stopped breathing.

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

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him and got him breathing again.

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

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didn't know what to expect.

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

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

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

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I can't look at them.

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

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brings back the trauma of that birth.

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

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any concern of his disability.

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

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that he may have Down Syndrome.

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

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

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that he does have Down Syndrome.

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And it was just the doctor's words.

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I never forgot the words.

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Just the whole sentence.

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

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it makes me really sad still.

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

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

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

VIKKI: 00:15:42

What?

JANNAH: 00:15:43

I didn't know what he was saying.

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I didn't even know what that meant.

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

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palate and things like that.

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

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

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

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

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

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

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So what does he mean?

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

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don't belong to mum and dad."

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And I'm like, "Okay."

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

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I don't get you."

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I said, His features look fine to me."

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

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

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

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

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looks like his older brother."

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

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Our eyes are just like that.

JANNAH: 00:16:34

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

JANNAH: 00:16:37

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

JANNAH: 00:16:40

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

JANNAH: 00:16:45

everything else was a blur to me.

JANNAH: 00:16:46

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

JANNAH: 00:16:49

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

JANNAH: 00:16:52

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

JANNAH: 00:16:59

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

JANNAH: 00:17:05

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

JANNAH: 00:17:10

day it was finding out something new.

JANNAH: 00:17:13

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

JANNAH: 00:17:17

Why are they low?

JANNAH: 00:17:17

We need to find out.

JANNAH: 00:17:19

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

JANNAH: 00:17:21

Will he need to go in for heart surgery?"

JANNAH: 00:17:23

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

JANNAH: 00:17:27

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

JANNAH: 00:17:31

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

JANNAH: 00:17:33

It was just such a horrible time in my life.

JANNAH: 00:17:36

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

JANNAH: 00:17:41

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

JANNAH: 00:17:46

It's never gonna be the same again."

JANNAH: 00:17:47

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

JANNAH: 00:17:52

going into high school that year.

VIKKI: 00:17:55

Such an important transitionary period for children.

JANNAH: 00:17:57

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

JANNAH: 00:18:01

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

JANNAH: 00:18:06

And I just felt sorry for them.

JANNAH: 00:18:08

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

JANNAH: 00:18:11

is life gonna be like for them?

JANNAH: 00:18:13

Will we ever go on holidays?

JANNAH: 00:18:15

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

JANNAH: 00:18:19

What is his care gonna be like?

JANNAH: 00:18:21

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

JANNAH: 00:18:29

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

JANNAH: 00:18:36

hard but you know, you'll cope."

JANNAH: 00:18:38

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

JANNAH: 00:18:44

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

JANNAH: 00:18:48

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

JANNAH: 00:18:52

but it isn't for mums, you know?

JANNAH: 00:18:55

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

JANNAH: 00:19:00

was congratulated for having a baby.

JANNAH: 00:19:03

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

JANNAH: 00:19:07

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

JANNAH: 00:19:11

Or you've got a beautiful baby girl.

JANNAH: 00:19:12

But that got stolen.

JANNAH: 00:19:15

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

JANNAH: 00:19:19

Because there wasn't a congratulation.

JANNAH: 00:19:21

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

JANNAH: 00:19:26

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

JANNAH: 00:19:31

it's not repeated to other mums.

JANNAH: 00:19:34

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

JANNAH: 00:19:38

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

JANNAH: 00:19:40

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

JANNAH: 00:19:43

have a disability when he does?

JANNAH: 00:19:45

They need to tell you."

JANNAH: 00:19:46

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

JANNAH: 00:19:51

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

JANNAH: 00:19:59

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

JANNAH: 00:20:02

"I have some terrible news".

JANNAH: 00:20:05

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

JANNAH: 00:20:09

it, I thought it was terrible.

JANNAH: 00:20:10

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

JANNAH: 00:20:13

wow, how is my life gonna change?

JANNAH: 00:20:15

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

JANNAH: 00:20:19

Is he gonna be able to do things?

JANNAH: 00:20:21

Is he gonna enjoy life?

JANNAH: 00:20:22

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

JANNAH: 00:20:27

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

JANNAH: 00:20:31

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

JANNAH: 00:20:36

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

JANNAH: 00:20:39

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

JANNAH: 00:20:44

We don't have to do anything for people.

JANNAH: 00:20:46

We don't have to be anything.

JANNAH: 00:20:47

We don't have to do things.

JANNAH: 00:20:49

It's us.

JANNAH: 00:20:50

We were all born with it.

JANNAH: 00:20:51

So he was born with it too.

JANNAH: 00:20:53

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

JANNAH: 00:20:57

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

JANNAH: 00:21:03

the birth of your beautiful baby boy.

JANNAH: 00:21:05

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

JANNAH: 00:21:09

he was a beautiful baby boy.

VIKKI: 00:21:11

and is!

JANNAH: 00:21:12

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

JANNAH: 00:21:14

it stays with people forever for life.

JANNAH: 00:21:17

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

JANNAH: 00:21:22

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

JANNAH: 00:21:27

slanted eyes and the bridge in his nose.

VIKKI: 00:21:30

Yeah.

VIKKI: 00:21:30

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

VIKKI: 00:21:34

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

VIKKI: 00:21:38

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

VIKKI: 00:21:41

is what a gorgeous boy he is.

VIKKI: 00:21:43

He's beautiful!

VIKKI: 00:21:45

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

VIKKI: 00:21:48

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

VIKKI: 00:21:50

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

VIKKI: 00:21:54

but my goodness, what a choice of words.

VIKKI: 00:21:58

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

VIKKI: 00:22:03

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

VIKKI: 00:22:08

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

VIKKI: 00:22:12

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

VIKKI: 00:22:16

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

VIKKI: 00:22:22

It just makes me so angry.

VIKKI: 00:22:25

Makes me so angry.

VIKKI: 00:22:26

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

VIKKI: 00:22:30

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

VIKKI: 00:22:35

putting together little packs.

VIKKI: 00:22:37

I wish I could remember her name right now.

VIKKI: 00:22:39

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

VIKKI: 00:22:44

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

VIKKI: 00:22:48

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

VIKKI: 00:22:54

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

VIKKI: 00:22:58

weeks, months, years to come.

VIKKI: 00:23:00

But also to say it's okay.

VIKKI: 00:23:03

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

VIKKI: 00:23:08

be such a joyful, wonderful gift."

VIKKI: 00:23:10

And all babies are gifts.

VIKKI: 00:23:13

All babies are gifts.

JANNAH: 00:23:15

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

JANNAH: 00:23:21

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

JANNAH: 00:23:28

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

JANNAH: 00:23:31

so grateful for him being in your life.

JANNAH: 00:23:33

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

JANNAH: 00:23:38

about even the things that he can't do.

JANNAH: 00:23:40

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

JANNAH: 00:23:44

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

JANNAH: 00:23:49

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

JANNAH: 00:23:56

It's not a race.

JANNAH: 00:23:57

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

JANNAH: 00:24:00

You know, we're all different.

JANNAH: 00:24:03

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

JANNAH: 00:24:08

us hope and we see it through that way.

JANNAH: 00:24:10

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

JANNAH: 00:24:15

you know, we all are different.

JANNAH: 00:24:17

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

JANNAH: 00:24:24

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

JANNAH: 00:24:28

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

JANNAH: 00:24:31

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

JANNAH: 00:24:36

You know?

JANNAH: 00:24:36

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

JANNAH: 00:24:42

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

JANNAH: 00:24:47

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

JANNAH: 00:24:53

that from Musa because he can't talk.

JANNAH: 00:24:56

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

JANNAH: 00:25:04

to deprive ourselves from that.

JANNAH: 00:25:05

And that's another thing society does to women.

JANNAH: 00:25:09

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

JANNAH: 00:25:16

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

JANNAH: 00:25:18

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

JANNAH: 00:25:21

Cause we can pick ourselves up again slowly.

JANNAH: 00:25:26

We will.

JANNAH: 00:25:27

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

JANNAH: 00:25:30

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

JANNAH: 00:25:33

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

JANNAH: 00:25:39

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

JANNAH: 00:25:44

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

JANNAH: 00:25:50

things to carry with me when I go outside.

JANNAH: 00:25:52

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

JANNAH: 00:25:57

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

JANNAH: 00:26:01

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

JANNAH: 00:26:05

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

JANNAH: 00:26:09

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

JANNAH: 00:26:14

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

JANNAH: 00:26:17

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

JANNAH: 00:26:25

years ago before Musa was born.

JANNAH: 00:26:28

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

JANNAH: 00:26:31

always been kind and empathetic.

JANNAH: 00:26:34

But Musa came and kind of developed that.

JANNAH: 00:26:38

He made me kinder, he made me more empathetic.

JANNAH: 00:26:42

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

JANNAH: 00:26:46

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

JANNAH: 00:26:51

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

JANNAH: 00:26:56

was something that was in my life.

JANNAH: 00:26:59

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

JANNAH: 00:27:05

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

JANNAH: 00:27:09

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

JANNAH: 00:27:11

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

JANNAH: 00:27:15

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

JANNAH: 00:27:18

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

JANNAH: 00:27:21

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

JANNAH: 00:27:25

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

JANNAH: 00:27:29

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

JANNAH: 00:27:36

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

JANNAH: 00:27:40

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

JANNAH: 00:27:44

or they're never gonna do things.

JANNAH: 00:27:45

Or they're also gonna be stuck in hospital.

JANNAH: 00:27:47

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

JANNAH: 00:27:50

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

JANNAH: 00:27:54

But it's moulded them into different people.

JANNAH: 00:27:58

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

JANNAH: 00:28:02

she had a meeting with college.

JANNAH: 00:28:05

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

JANNAH: 00:28:07

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

JANNAH: 00:28:11

What do you hope to achieve from it?"

JANNAH: 00:28:13

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

JANNAH: 00:28:16

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

JANNAH: 00:28:20

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

JANNAH: 00:28:24

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

JANNAH: 00:28:29

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

JANNAH: 00:28:32

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

JANNAH: 00:28:37

these children come and mould people in their lives to actually

JANNAH: 00:28:44

be the best version of themselves.

JANNAH: 00:28:46

Would my daughter ever think to do something like that and

JANNAH: 00:28:50

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

JANNAH: 00:28:55

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

JANNAH: 00:29:00

doesn't make things better.

JANNAH: 00:29:02

A burden makes things worse.

JANNAH: 00:29:04

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

JANNAH: 00:29:07

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

JANNAH: 00:29:14

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

VIKKI: 00:29:17

Oh my goodness.

VIKKI: 00:29:18

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

JANNAH: 00:29:21

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

JANNAH: 00:29:24

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

JANNAH: 00:29:28

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

JANNAH: 00:29:31

weight loss and my walking and my running.

JANNAH: 00:29:34

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

JANNAH: 00:29:37

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

JANNAH: 00:29:40

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

JANNAH: 00:29:47

able to give to myself are my older two.

JANNAH: 00:29:51

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

JANNAH: 00:29:52

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

JANNAH: 00:29:56

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

JANNAH: 00:30:01

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

JANNAH: 00:30:04

stuck with a disability as well.

JANNAH: 00:30:06

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

JANNAH: 00:30:08

gonna bond with him properly.

JANNAH: 00:30:10

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

JANNAH: 00:30:15

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

JANNAH: 00:30:20

got them, they're like my hands.

JANNAH: 00:30:23

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

JANNAH: 00:30:26

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

JANNAH: 00:30:29

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

JANNAH: 00:30:32

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

JANNAH: 00:30:35

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

JANNAH: 00:30:38

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

JANNAH: 00:30:40

I've got him.

JANNAH: 00:30:41

And just go."

JANNAH: 00:30:43

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

JANNAH: 00:30:46

I just felt so much refreshed.

JANNAH: 00:30:48

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

JANNAH: 00:30:52

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

JANNAH: 00:30:56

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

JANNAH: 00:31:00

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

JANNAH: 00:31:05

But life isn't.

JANNAH: 00:31:06

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

JANNAH: 00:31:10

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

JANNAH: 00:31:15

and we're in hospital for days.

JANNAH: 00:31:18

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

JANNAH: 00:31:24

together and sit and laugh together.

JANNAH: 00:31:26

Those things haven't changed.

JANNAH: 00:31:27

We still do that.

JANNAH: 00:31:28

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

JANNAH: 00:31:34

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

JANNAH: 00:31:40

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

JANNAH: 00:31:46

You know?

JANNAH: 00:31:47

You'd be surprised if you walked into it.

VIKKI: 00:31:49

What is 'normal' anyway?

VIKKI: 00:31:51

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

VIKKI: 00:31:54

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

VIKKI: 00:31:59

is just such a, an inspiring woman.

VIKKI: 00:32:02

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

VIKKI: 00:32:05

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

VIKKI: 00:32:09

It's the society, how inaccessible society is.

VIKKI: 00:32:15

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

VIKKI: 00:32:19

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

VIKKI: 00:32:24

words that that doctor ushered to you.

VIKKI: 00:32:27

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

VIKKI: 00:32:31

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

VIKKI: 00:32:35

perpetuation that teenagers are lazy.

VIKKI: 00:32:38

Teenagers only think about themselves.

VIKKI: 00:32:40

They're very self-indulgent.

VIKKI: 00:32:42

Actually that's bollocks.

VIKKI: 00:32:44

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

VIKKI: 00:32:48

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

VIKKI: 00:32:55

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

VIKKI: 00:32:59

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

JANNAH: 00:33:04

Yeah.

JANNAH: 00:33:04

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

JANNAH: 00:33:07

the society with, those values.

JANNAH: 00:33:11

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

JANNAH: 00:33:17

been shown to them by Musa.

JANNAH: 00:33:19

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

JANNAH: 00:33:23

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

JANNAH: 00:33:27

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

JANNAH: 00:33:30

And he's got a feeding tube.

JANNAH: 00:33:31

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

JANNAH: 00:33:33

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

JANNAH: 00:33:36

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

JANNAH: 00:33:40

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

JANNAH: 00:33:45

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

JANNAH: 00:33:47

Wow.

JANNAH: 00:33:48

Someone else like us, another family like us."

JANNAH: 00:33:50

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

JANNAH: 00:33:54

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

JANNAH: 00:34:00

Such a great lesson that they've been taught.

JANNAH: 00:34:03

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

JANNAH: 00:34:09

these humans that we've become.

JANNAH: 00:34:12

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

JANNAH: 00:34:17

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

JANNAH: 00:34:21

amazing and incredible human being.

JANNAH: 00:34:24

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

JANNAH: 00:34:31

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

JANNAH: 00:34:36

be more prouder to be his mum.

JANNAH: 00:34:40

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

JANNAH: 00:34:43

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

JANNAH: 00:34:50

how people are gonna access places.

JANNAH: 00:34:53

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

JANNAH: 00:34:58

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

JANNAH: 00:35:02

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

JANNAH: 00:35:10

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

JANNAH: 00:35:16

that isn't the fault of his disability.

JANNAH: 00:35:18

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

JANNAH: 00:35:24

everybody to be included.

JANNAH: 00:35:26

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

JANNAH: 00:35:29

We all want to be included.

JANNAH: 00:35:31

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

JANNAH: 00:35:38

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

JANNAH: 00:35:42

a person without a disability.

JANNAH: 00:35:44

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

VIKKI: 00:35:47

Yeah.

VIKKI: 00:35:48

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

VIKKI: 00:35:51

that is so hard to understand that making things accessible to

VIKKI: 00:35:55

everybody doesn't harm anybody.

VIKKI: 00:35:58

It just makes things better for everybody.

VIKKI: 00:36:02

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

VIKKI: 00:36:07

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

VIKKI: 00:36:12

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

VIKKI: 00:36:16

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

VIKKI: 00:36:22

One in five people have a disability.

VIKKI: 00:36:27

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

VIKKI: 00:36:33

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

VIKKI: 00:36:37

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

VIKKI: 00:36:44

You know, disabled people are so resilient, resourceful,

VIKKI: 00:36:47

they have so much to offer.

JANNAH: 00:36:49

Yeah.

JANNAH: 00:36:50

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

JANNAH: 00:36:52

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

JANNAH: 00:36:56

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

JANNAH: 00:37:02

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

JANNAH: 00:37:05

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

JANNAH: 00:37:11

they won't talk to him anymore.

JANNAH: 00:37:13

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

JANNAH: 00:37:16

Or "What does he like doing?

JANNAH: 00:37:17

Can he do that?"

JANNAH: 00:37:18

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

JANNAH: 00:37:24

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

JANNAH: 00:37:28

You know, you can ask him how he is.

JANNAH: 00:37:30

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

JANNAH: 00:37:32

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

JANNAH: 00:37:35

um,

JANNAH: 00:37:36

while you communicate with him.

JANNAH: 00:37:37

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

JANNAH: 00:37:43

small, but they're not small to people.

JANNAH: 00:37:46

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

JANNAH: 00:37:53

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

JANNAH: 00:37:56

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

JANNAH: 00:37:59

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

JANNAH: 00:38:01

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

JANNAH: 00:38:03

We all wanna do that.

JANNAH: 00:38:04

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

JANNAH: 00:38:08

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

JANNAH: 00:38:14

they won't be able to do anything."

JANNAH: 00:38:15

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

JANNAH: 00:38:21

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

JANNAH: 00:38:25

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

JANNAH: 00:38:28

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

JANNAH: 00:38:33

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

JANNAH: 00:38:36

to climb a pass to get onto the slide.

JANNAH: 00:38:38

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

JANNAH: 00:38:42

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

JANNAH: 00:38:44

because he won't be able to do that.

JANNAH: 00:38:45

He'll go then he'll get stuck.

JANNAH: 00:38:46

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

JANNAH: 00:38:50

But he was so adamant he wanted to try that.

JANNAH: 00:38:53

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

JANNAH: 00:38:54

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

JANNAH: 00:38:59

stand back and see what he actually does.

JANNAH: 00:39:01

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

JANNAH: 00:39:03

But Musa tries everything.

JANNAH: 00:39:06

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

JANNAH: 00:39:10

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

JANNAH: 00:39:14

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

JANNAH: 00:39:17

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

JANNAH: 00:39:21

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

JANNAH: 00:39:26

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

JANNAH: 00:39:28

himself because he knew he accomplished.

JANNAH: 00:39:31

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

JANNAH: 00:39:37

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

JANNAH: 00:39:40

I'm going down this slide."

JANNAH: 00:39:41

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

JANNAH: 00:39:43

And he is!

JANNAH: 00:39:45

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

JANNAH: 00:39:47

that he would be able to, to do that.

JANNAH: 00:39:50

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

JANNAH: 00:39:57

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

JANNAH: 00:40:02

It's just that he is different.

JANNAH: 00:40:05

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

JANNAH: 00:40:11

have a disability could just go and do.

JANNAH: 00:40:13

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

JANNAH: 00:40:17

may not do it like that child.

JANNAH: 00:40:19

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

JANNAH: 00:40:24

It's nice to see people doing things differently.

JANNAH: 00:40:26

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

JANNAH: 00:40:29

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

JANNAH: 00:40:33

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

JANNAH: 00:40:36

"Oh, I wanna do it like that!"

VIKKI: 00:40:37

That looks cool!

JANNAH: 00:40:38

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

JANNAH: 00:40:41

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

JANNAH: 00:40:44

Their life isn't miserable.

JANNAH: 00:40:46

We've all got hard days, you know?

JANNAH: 00:40:48

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

JANNAH: 00:40:51

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

JANNAH: 00:40:54

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

JANNAH: 00:41:02

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

VIKKI: 00:41:06

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

VIKKI: 00:41:10

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

VIKKI: 00:41:16

who really need to hear that right now.

VIKKI: 00:41:19

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

VIKKI: 00:41:24

what support was there for you?

VIKKI: 00:41:25

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

VIKKI: 00:41:31

irrespective of Musa's conditions.

VIKKI: 00:41:34

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

JANNAH: 00:41:40

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

JANNAH: 00:41:45

it was the worst time of my life.

JANNAH: 00:41:49

After the birth, obviously.

JANNAH: 00:41:51

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

JANNAH: 00:41:56

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

JANNAH: 00:42:01

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

JANNAH: 00:42:06

figure out what's going on with him."

JANNAH: 00:42:07

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

JANNAH: 00:42:13

else, was forgotten, obviously not for me.

JANNAH: 00:42:15

I was still processing what actually has just happened.

JANNAH: 00:42:19

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

JANNAH: 00:42:23

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

JANNAH: 00:42:27

And you know what, what just happened now?

JANNAH: 00:42:30

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

JANNAH: 00:42:33

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

JANNAH: 00:42:38

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

VIKKI: 00:42:42

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

VIKKI: 00:42:45

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

VIKKI: 00:42:52

that your baby may not have survived.

JANNAH: 00:42:55

Yeah.

JANNAH: 00:42:56

Yeah, and that's the whole thing.

JANNAH: 00:42:58

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

JANNAH: 00:43:01

on the monitor and then it was nothing.

JANNAH: 00:43:04

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

JANNAH: 00:43:08

like, "Is everything all right?"

JANNAH: 00:43:09

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

JANNAH: 00:43:12

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

JANNAH: 00:43:15

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

JANNAH: 00:43:18

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

JANNAH: 00:43:22

and then they did that.

JANNAH: 00:43:23

And again, there was nothing.

JANNAH: 00:43:24

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

JANNAH: 00:43:27

in for an emergency C-section.

JANNAH: 00:43:29

So everything was so rushed.

JANNAH: 00:43:31

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

JANNAH: 00:43:36

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

JANNAH: 00:43:40

pick up the pieces, on my own.

JANNAH: 00:43:44

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

JANNAH: 00:43:50

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

JANNAH: 00:43:56

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

JANNAH: 00:44:00

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

JANNAH: 00:44:05

speak because of the low muscle tone.

JANNAH: 00:44:08

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

JANNAH: 00:44:13

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

JANNAH: 00:44:21

could not suck to keep himself alive.

JANNAH: 00:44:24

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

JANNAH: 00:44:31

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

JANNAH: 00:44:37

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

JANNAH: 00:44:40

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

JANNAH: 00:44:45

you know, suck while he was asleep.

JANNAH: 00:44:47

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

JANNAH: 00:44:49

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

JANNAH: 00:44:54

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

JANNAH: 00:45:00

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

JANNAH: 00:45:06

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

JANNAH: 00:45:11

be able to feed from that tube.

JANNAH: 00:45:13

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

JANNAH: 00:45:16

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

JANNAH: 00:45:19

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

JANNAH: 00:45:24

I don't want him to have this tube.

JANNAH: 00:45:25

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

JANNAH: 00:45:27

The fear of what this thing is.

JANNAH: 00:45:30

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

JANNAH: 00:45:34

said, "Look, this is what it is.

JANNAH: 00:45:35

It's nothing invasive.

JANNAH: 00:45:37

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

JANNAH: 00:45:41

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

JANNAH: 00:45:44

him get enough milk for now.

JANNAH: 00:45:46

And you will work with the dieticians to either wean him

JANNAH: 00:45:50

off that or go to the next steps.

JANNAH: 00:45:52

But we will talk you through that."

JANNAH: 00:45:53

Nobody explained anything to me.

JANNAH: 00:45:56

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

JANNAH: 00:45:59

he will end up with a tube."

JANNAH: 00:46:00

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

JANNAH: 00:46:05

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

JANNAH: 00:46:09

asleep, or syringing it in his mouth.

JANNAH: 00:46:11

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

JANNAH: 00:46:15

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

JANNAH: 00:46:19

was sometimes syringing it in his mouth.

JANNAH: 00:46:22

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

JANNAH: 00:46:28

that he had Down Syndrome.

JANNAH: 00:46:30

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

JANNAH: 00:46:34

forget he's got Down Syndrome.

JANNAH: 00:46:35

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

JANNAH: 00:46:38

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

JANNAH: 00:46:41

or " he's too small for his age.

JANNAH: 00:46:43

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

JANNAH: 00:46:45

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

JANNAH: 00:46:48

he's not weighed by that chart.

JANNAH: 00:46:49

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

JANNAH: 00:46:52

babies with Down Syndrome."

JANNAH: 00:46:53

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

JANNAH: 00:46:55

All right, we didn't know that."

JANNAH: 00:46:57

And then I'd have to continuously repeat myself.

VIKKI: 00:47:00

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

JANNAH: 00:47:04

Yeah.

JANNAH: 00:47:04

I was so exhausted.

JANNAH: 00:47:06

I was so, so exhausted.

JANNAH: 00:47:08

I wasn't changing my clothes.

JANNAH: 00:47:10

I wasn't having a shower.

JANNAH: 00:47:11

I was just in a really bad place.

JANNAH: 00:47:14

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

JANNAH: 00:47:17

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

JANNAH: 00:47:21

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

JANNAH: 00:47:26

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

JANNAH: 00:47:31

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

JANNAH: 00:47:34

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

JANNAH: 00:47:36

I'm struggling.

JANNAH: 00:47:37

He won't drink his milk."

JANNAH: 00:47:38

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

JANNAH: 00:47:43

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

JANNAH: 00:47:46

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

JANNAH: 00:47:47

Some babies just drink less milk."

JANNAH: 00:47:49

And they'd send me back on my way.

JANNAH: 00:47:51

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

JANNAH: 00:47:55

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

JANNAH: 00:47:59

dropped like two centiles.

JANNAH: 00:48:01

What's happened, mum?"

JANNAH: 00:48:03

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

JANNAH: 00:48:06

gonna have to get him some help.

JANNAH: 00:48:07

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

VIKKI: 00:48:10

What?!

JANNAH: 00:48:11

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

JANNAH: 00:48:15

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

JANNAH: 00:48:21

coming here and saying "I need help.

JANNAH: 00:48:22

He's not drinking his milk."

VIKKI: 00:48:23

You're not being listened to.

JANNAH: 00:48:25

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

JANNAH: 00:48:28

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

JANNAH: 00:48:30

someone, because actually I need help.

JANNAH: 00:48:32

He's not drinking his milk.

JANNAH: 00:48:33

And this is not normal.

JANNAH: 00:48:35

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

JANNAH: 00:48:38

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

JANNAH: 00:48:41

That can't be right.

JANNAH: 00:48:42

No one should have to do this.

JANNAH: 00:48:44

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

JANNAH: 00:48:49

I've got no life.

JANNAH: 00:48:50

I'm not doing anything else."

VIKKI: 00:48:52

My God.

VIKKI: 00:48:53

What pressure on you!

JANNAH: 00:48:54

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

JANNAH: 00:48:56

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

JANNAH: 00:49:00

This is not normal.

JANNAH: 00:49:01

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

JANNAH: 00:49:04

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

JANNAH: 00:49:07

So she got me, you know, a dietician.

JANNAH: 00:49:11

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

VIKKI: 00:49:15

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

JANNAH: 00:49:19

Yeah, yeah- to get an appointment.

JANNAH: 00:49:20

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

JANNAH: 00:49:23

new group opening, in our area.

JANNAH: 00:49:26

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

JANNAH: 00:49:33

It's called Jolly Josh.

JANNAH: 00:49:35

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

JANNAH: 00:49:39

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

JANNAH: 00:49:43

catch up, get a cup of coffee.

VIKKI: 00:49:44

That sounds brilliant.

JANNAH: 00:49:45

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

JANNAH: 00:49:48

help you if you're having trouble.

JANNAH: 00:49:49

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

JANNAH: 00:49:55

And, I was on my own.

JANNAH: 00:49:57

There was me and Musa.

JANNAH: 00:49:58

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

JANNAH: 00:50:01

He hadn't drank any milk.

JANNAH: 00:50:03

I couldn't get him to have any milk.

JANNAH: 00:50:05

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

JANNAH: 00:50:10

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

JANNAH: 00:50:13

I was crying.

JANNAH: 00:50:14

my clothes had sick on them.

JANNAH: 00:50:16

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

JANNAH: 00:50:20

I was tired, exhausted.

JANNAH: 00:50:23

I just, I, I actually felt suicidal.

JANNAH: 00:50:27

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

JANNAH: 00:50:32

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

JANNAH: 00:50:38

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

JANNAH: 00:50:43

I just can't do it.

JANNAH: 00:50:45

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

JANNAH: 00:50:49

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

JANNAH: 00:50:52

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

JANNAH: 00:50:56

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

JANNAH: 00:50:59

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

JANNAH: 00:51:02

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

JANNAH: 00:51:06

I didn't put a coat on or anything.

JANNAH: 00:51:08

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

JANNAH: 00:51:10

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

JANNAH: 00:51:13

And I just went there, just dumped my car.

JANNAH: 00:51:16

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

JANNAH: 00:51:19

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

JANNAH: 00:51:23

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

JANNAH: 00:51:29

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

JANNAH: 00:51:35

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

VIKKI: 00:51:40

I'll put a link in the show notes.

JANNAH: 00:51:42

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

JANNAH: 00:51:47

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

JANNAH: 00:51:50

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

JANNAH: 00:51:52

Um, how are you?"

JANNAH: 00:51:54

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

JANNAH: 00:51:56

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

JANNAH: 00:51:59

I need someone to help me.

JANNAH: 00:52:01

I'm not okay."

JANNAH: 00:52:02

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

JANNAH: 00:52:05

said, "You're in the right place.

JANNAH: 00:52:06

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

JANNAH: 00:52:08

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

JANNAH: 00:52:10

And it was from there.

JANNAH: 00:52:12

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

JANNAH: 00:52:18

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

JANNAH: 00:52:23

a special part of our heart because of.

JANNAH: 00:52:27

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

JANNAH: 00:52:33

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

JANNAH: 00:52:36

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

JANNAH: 00:52:40

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

JANNAH: 00:52:42

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

JANNAH: 00:52:46

people my story and no one's helping me.

JANNAH: 00:52:48

No one does anything about it.

JANNAH: 00:52:50

I keep telling people and nothing gets done.

JANNAH: 00:52:53

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

JANNAH: 00:52:57

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

JANNAH: 00:53:01

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

JANNAH: 00:53:05

gonna actually get the help you need.

JANNAH: 00:53:06

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

JANNAH: 00:53:09

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

JANNAH: 00:53:14

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

JANNAH: 00:53:18

like 20mls every, every half an hour.

JANNAH: 00:53:21

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

JANNAH: 00:53:22

This is not normal.

JANNAH: 00:53:23

None of this is normal."

VIKKI: 00:53:24

Oh Oh my goodness - how amazing!

JANNAH: 00:53:26

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

JANNAH: 00:53:29

You don't have to wait for the dietician.

JANNAH: 00:53:31

I'm bringing the dietician to your house.

JANNAH: 00:53:33

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

JANNAH: 00:53:37

And then the next morning she came with the dietician.

JANNAH: 00:53:39

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

JANNAH: 00:53:42

told before and got freaked out.

JANNAH: 00:53:45

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

JANNAH: 00:53:48

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

JANNAH: 00:53:50

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

JANNAH: 00:53:53

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

JANNAH: 00:53:56

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

JANNAH: 00:53:58

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

JANNAH: 00:54:02

and he can have it."

VIKKI: 00:54:03

So you are informed.

VIKKI: 00:54:05

That's all you needed.

VIKKI: 00:54:06

Yeah.

VIKKI: 00:54:07

And then I looked at it.

VIKKI: 00:54:08

Then I thought to myself, "Wow."

VIKKI: 00:54:09

I didn't know what it was.

VIKKI: 00:54:10

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

VIKKI: 00:54:12

And I...

VIKKI: 00:54:13

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

VIKKI: 00:54:17

in my own hand and do things.

VIKKI: 00:54:19

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

VIKKI: 00:54:23

life just changed overnight.

VIKKI: 00:54:26

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

VIKKI: 00:54:30

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

VIKKI: 00:54:34

feed and the pump was feeding him.

VIKKI: 00:54:36

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

VIKKI: 00:54:41

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

VIKKI: 00:54:46

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

VIKKI: 00:54:51

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

VIKKI: 00:54:57

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

VIKKI: 00:55:05

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

VIKKI: 00:55:07

milk, he's gonna need a tube."

VIKKI: 00:55:09

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

VIKKI: 00:55:11

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

VIKKI: 00:55:16

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

VIKKI: 00:55:19

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

VIKKI: 00:55:22

down his throat and in his belly.

JANNAH: 00:55:24

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

JANNAH: 00:55:28

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

VIKKI: 00:55:31

Yeah.

VIKKI: 00:55:32

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

VIKKI: 00:55:38

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

VIKKI: 00:55:42

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

VIKKI: 00:55:46

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

VIKKI: 00:55:52

know, what it may or may not mean.

VIKKI: 00:55:55

Um, could I just ask, are you Muslim?

JANNAH: 00:55:59

Yes.

VIKKI: 00:56:00

Because, yeah, I saw the Eid Mubarak things.

VIKKI: 00:56:04

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

VIKKI: 00:56:09

or having children with disabilities?

VIKKI: 00:56:11

Was there anything there that you had to

JANNAH: 00:56:14

Um,

VIKKI: 00:56:15

adapt?

JANNAH: 00:56:16

Yeah.

JANNAH: 00:56:17

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

JANNAH: 00:56:23

Um, that's where the problem is.

JANNAH: 00:56:27

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

JANNAH: 00:56:32

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

JANNAH: 00:56:41

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

JANNAH: 00:56:47

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

JANNAH: 00:56:52

regardless of how different they might be.

JANNAH: 00:56:54

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

JANNAH: 00:57:01

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

JANNAH: 00:57:09

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

JANNAH: 00:57:12

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

JANNAH: 00:57:19

about his life and we share our journey.

JANNAH: 00:57:22

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

JANNAH: 00:57:27

um, they expect him to be hidden away.

JANNAH: 00:57:30

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

JANNAH: 00:57:34

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

JANNAH: 00:57:38

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

JANNAH: 00:57:41

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

JANNAH: 00:57:47

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

JANNAH: 00:57:54

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

JANNAH: 00:57:59

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

JANNAH: 00:58:04

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

JANNAH: 00:58:10

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

JANNAH: 00:58:14

little they may contribute to society.

JANNAH: 00:58:17

That doesn't matter.

JANNAH: 00:58:18

People forget that our contributing to society isn't

JANNAH: 00:58:21

just going out there and working.

JANNAH: 00:58:24

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

VIKKI: 00:58:29

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

VIKKI: 00:58:32

Musa is now overdue a big cuddle.

VIKKI: 00:58:35

I think.

VIKKI: 00:58:36

Yeah, he's been so good.

VIKKI: 00:58:38

I hope he feels better soon.

VIKKI: 00:58:39

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

VIKKI: 00:58:45

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

VIKKI: 00:58:48

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

VIKKI: 00:58:54

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

VIKKI: 00:58:59

But yeah, what a legacy.

VIKKI: 00:59:01

he's had.

VIKKI: 00:59:01

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

VIKKI: 00:59:07

in terms of his, you know, legacy.

VIKKI: 00:59:09

So, uh, thank you so much.

JANNAH: 00:59:11

Thank you for having us here.

VIKKI: 00:59:13

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

VIKKI: 00:59:18

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

VIKKI: 00:59:22

and that means helping more parents.