March 21, 2014

heart to heart with sam duke | world down syndrome day




Today we recognise  World Down Syndrome Day and invite you to join along - Jodi had the pleasure of chatting to the beautiful Sam Duke for this weeks 'heart to heart' about the joys and challenges of mothering Stevie. Be warned - tissues may be necessary to watch this video (shared with permission):





SAM DUKE
mother  |   Instagram @dukedukedukeduke

- - -

Jodi: Hello

Sam: Hello! I made it on time. Can't remember the last time I was on time to something...

J: haha, I was always on time until I became a mum. Now I always run a good 15 minutes late - to everything

S: Me too. Hence why we are here while our little ones are sound asleep..

J: yes. How are the girls?
and how are YOU?

S: They are good! I'm wondering where the past near 2 years has gone! Katie is 2 next month and Stevie is 18 months...time to go again..? Haha

J: You're considering it?

S: Some days, yes! But then other days I'm glad our wedding is in October this year so it keeps me waiting a while longer. Think it's only fair to our girls that we concentrate on these years with the 2 of them before our attention is thrown elsewhere...

J: How many months pregnant were you when you welcomed Katie into your family?

S: So I would have been 4 months pregnant. 
It's no wonder that I fell madly in love with her when I set eyes on her (considering I was in maternal overdrive eager to meet my "first child")

J: How old was she at the time?

S: This was when she was first born..

J: I'm still in awe of you. Did it take a lot of consideration or did you just know, in your heart, that it was right?

S: My partner was great. Katie is his immediate niece (biologically) and he can now admit that he didn't want her to go into foster care, but at the time didn't want to put any pressure on me, given we were expecting our first. 
But in our heart we both felt she was our little girl.

And little did we know what an important role she would play 5 months later..

J: Yes, so five months later you had Stevie and...

S: I just took a big deep breath...

When Stevie was born we learnt that she has Down Syndrome.

J: Did you learn that moments after her birth?

S: Yeah. My partner and I learnt it as soon as we lay eyes on her. As did the team of pediatricians that were suddenly all around us...

J: How did it feel?

S: Like my world had been torn in 2.

J: Were you holding Stevie or did the doctors take over?

S: I didn't get to see her till I visited the special care nursery. She was pretty much bounced from my chest to the doctors within seconds of her being born. She had breathing problems. So it wasn't until I went down to special care that I knew.  I remember not knowing how to ask.. I said something like "have all the tests that need to be done at birth been completed..? And my partner then said 'does she have Down syndrome?" This was all without us having had private thoughts to each other. We both just knew.

J: How did you react? - physically and emotionally.

S: It was by far the hardest moment I've ever experienced. I had 9 months where I built up expectations of my birth, breastfeeding, my baby and our future. And in a matter of seconds all those expectations were shattered.

J: How did you get on with it? Because you had to, didn't you...

S: I would say it took a couple of months before we came to terms with it all enough to start enjoying her. And yes, to begin with we got on with it because we had to.. But it was hard to deal with a situation so unexpected, in an unexpected environment. Stevie was in Westmead Hospital for the first 3 weeks so I was being a mother on the nurses terms and it was hard to feel like a mother until we got to bring her home! That was when reality set it, and I had to be a mother.

J: What was it like, when you brought her home and you began to accept?

S: Amazing! It was all the things I had read when receiving a crash course on Down Syndrome from Google in those first few weeks. 
"The shock will go away" 
"She will be the best thing to have happened to you"
I remember reading these words and thinking I’d never get there. And now although I can recall those early days, I can't imagine feeling any other way about her. The love she gives is a love that is indescribable.


J: I think all pregnant women think they'll fall in love with their baby at birth. That's not always the case...sometimes it takes days or weeks or months, but when we fall we fall deep and hard.

What health concerns did she have in those first few months?

S: It's so true. I remember having such guilt over the different emotions I felt from when Katie was born to that of Stevie. But it was just fear of the unknown.

J: And shock. As for guilt - oh mother guilt, so powerful

S: She "only" had gut issues. She had this repaired when she was 4 days old which allowed her to start feeding a week later.. When I say "only" - she has been very lucky with her health.. It's very common for babies with DS to have heart defects.

J: How important was family support in those first few months? I suppose you relied on your tight-knit family more than ever then...

S: There's a mountain of health issues they're more prone too. But some good luck, a gluten and dairy free diet along with supplementing has kept her out of hospital.

It was so vital. I've always had strong family relationships, but they reached a new level through this time.

J: When did you start connecting with the local down syndrome community? Was it confronting for you?

S: Everybody just wanted to make it better.

It took me a while to seek out all the available resources, groups, intervention that is out there. 
Everything I read was U.S. based and when I finally found a Facebook group, I found a mum Robyn who opened up a world of resources through other parents, play groups and therapists..

This was how I met other young babies and children with Down Syndrome and it helped me so much because I was seeing my future. And my future looked brighter, immediately.

J: That must have been quite a momentous time for you, as a mother

It was massive. It helped me see Stevie for who she was. Yes she has Down Syndrome like these other toddlers, but each of them SO different. It's something that I'd love to see society change. And it all comes down to awareness. The more awareness, the more you see a person, not a disability..

J: ...and I presume that most people, strangers, see the disability first...

S: Some do, yes.. But I've never heard a comment that I've taken offense to. All have come from a good place.

People will often say 'she looks pretty mild, you can barely tell she has it' as though it's a nice thing to say.

Stevie has Down Syndrome: she has the beautiful almond eyes, the low set ears, the flat bridged nose - but it's these common features along with lots of her parents features that makes her who she is.

J: She is gorgeous!

S: I know I'm biased, but she really is so beautiful.

J: So what has it been like, to have daughters five months apart?

S: Full on!

J: I bet.

S: They are complete opposites. Stevie the rough, stubborn, determined, feisty child. And Katie, so eager to please, needy, sensitive, uncertain..

But the best big sister. Already they are learning so much from each other.

And me, from them!

J: What have you learnt about yourself?

I've learnt that I am stronger than I gave myself credit for.

I've learnt how important it is to look after yourself because as a mother, for your children, you have to!

I've just started a 21 day meditation wellness project to 'recharge' - but even then I find myself doing at night so I'm not interrupted by the sound of my two gorgeous alarms in the morning

J: you really do...us mothers, we keep everything going. But we have to be kind to ourselves, too.

S: Easier said then done sometimes. I have my partner constantly reminding me to have 'me' time..

J: good on him!

S: And the girls don't mind it either. Daddy's girls. Particularly Stevie. She's got him wrapped round her finger..

J: haha, you can see the cheekiness in her eyes! I think it's time I let you get some rest but I just wanted to ask you....what would you say to a mother who has just discovered her baby has down syndrome?

S: That with every challenge, you will be rewarded twice as much. 
That hospital visits and therapy sessions come and go, but the love your child will give is forever.

J: Thanks, Sam, for your honesty. Much love to you and the girls x








4 comments:

  1. I just loved reading this today. It brought teats to my eyes. Such an amazing mum, to two wonderful girls. Thanks for sharing your story Sam x

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    1. It's such a beautiful story, isn't it? Thanks so much for reading Rhiannon, and for your kind words of solidarity xx

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  2. Another wonderful Heart to Heart. Here's a toast to raising awareness! I've worked with and supported young adults with different learning, physical and health challenges for over 10 years and have learned tremendously from them. Focusing on their abilities rather than their perceived disabilities is something we can all work on.

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    1. "Focusing on their abilities rather than their perceived disabilities is something we can all work on."

      Cou;dn't have said it better Ethel! We're so glad you enjoyed this H2H xx

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