Shine Bright Natty: Nativity Star Realisations

Star
was one of Natalia Hope's very first words. (Along with 'cake' and 'chocolate' and 'more'!)
And her name means 'birth', a December-born baby who was allowed home from hospital on Christmas Eve. The greatest gift ever imaginable.

Our little star 

loves this time of year, the lights, the twinkling, the craft activities, the gifts, the sing-along DVDs, the family and friends. She'd happily let the festivities carry on all year if she could. I wonder if you know anyone like that...?

There's so much to do, see and take part in, a veritable sensory learning paradise for many children. Of course one of the most anticipated dates in the calendar is the school play or concert, and this year Natty's class are staging a classic Nativity. Last year it was The 3 Little Penguins and Natty nose-picked, danced and grinned her way through the performance, just as her peers did, literally dressed as a star.


Last week I opened Natty's book bag and removed a slip of paper. I think it read along the lines of:



Your child, 
Natty
will be performing in the Christmas Nativity play
as
Mary.

Please supply dark leggings and a white top.
(And bring tissues.)





At least I think that's what it said because I didn't read past the word Mary. Tears welled up in my eyes. Daddy Downs Side Up complained of dust in his eyes too. We hugged our little star and signed 'proud' through our smiles and tears and whoops of excitement.

Now everyone I have told about this says, 'Ahh how lovely.' Or, 'Oh she'll love that!' Or, 'You must be so proud'. I bet your first reaction was just that too was't it?

Yes. 
Yes. 
And yes. 

It is. 
She will. 
And we are.



The day she arrived in our lives I foolishly feared we would never step out in public again. Then there were our worries over whether she would survive heart surgery. I was afraid to love her unconditionally in case she didn't make it and it would hurt too much if I had taken that leap. We had no idea of what lay ahead, but we vowed to take one step at a time and always follow Natty's lead in what was best for her with regard to schooling and interests.

So to hold a piece of paper in my shaking hands saying that she had been asked to play the central role in the (mainstream) school production was beyond wonderful, beyond our wildest dreams. This year Natty would be the star alongside her 'typically developing' classmates. My heart was bursting out of my chest with pride. 

The part is made for Natty I must say, she gets to stand centre stage, she'll think all the applause is for her, Mary isn't a big speaking role, just a couple of precious lines that we have practised so hard that she is shouting them in her sleep, and she gets to hold a much-cherished doll throughout.

(I just hope she doesn't have a grumpy moment as she did when she played a sheep 2 years ago...)




So why then are the tears of pride stinging? 

Why are our hearts alternately singing and weighing heavy? Why do I want to add a 'but...' to your ooooohs and aaaaaahs? Why am I a little nervous of the event, fearing making an emotional fool of myself?

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms will be a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself. Even if she was physically able, it wouldn't be in her best interests emotionally, for becoming independent and able to look after herself with support is our best aim. 

The day she was born I sobbed over this fact. I grieved the loss of the Grandchildren I assumed she would bring to our family. It came from some primeval place deep within my soul, a place that the head cannot rule over however logically you try to reason it out. I thought I had come to terms with the fact over the years, I can watch Natty play with dolls now without her words 'Look at my baby', sending me rushing for my sunglasses. But I realise, sitting here with tear-stained cheeks after driving home from school releasing chest-deep sobs alone in the car, that I am far, far from that place.

Now, Natty's fairy Godmothers don't have any children. Her Great Cousin doesn't have any offspring. One of my dearest former colleagues cannot bear the thought of reproducing. 
But for all of them it was a lifestyle choice, a decision that they made.

My oldest chum and her partner were unable to conceive and have just adopted a gorgeous little boy after years of heartache. Having children isn't the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul searching to come to terms with that fact. It's a loss, an empty void, that is hard to fill.

And one day we will have to have that heart-breaking conversation with Natty, who may or may not understand the whys and wherefores. 
We will have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.
I hope the realisation doesn't crush her.

Perhaps she will fill her life in other ways, get a job in a childcare capacity, or maybe it will never cross her mind to be a mother and I am overthinking the whole thing. It's all a long way off and I don't know any of the answers yet. I don't even know what all the questions are. I will look to the families I know and respect who have led the way for advice and support.

I do know we will have to turn being an aunty (which she and Mia are already) into an important and valued starring role, just as we view motherhood.

Aunty Natty teaches nephew Baby Max to say 'Oooo'.



So if you see me sobbing in a village hall at 6pm tomorrow evening, please excuse me. You now know it's not because I am over proud or pathetically pushy or super soppy. 
You'll know it's because I am taking in and assimilating all of Natalia's unique star qualities





See the photos taken during the nativity performance here. 
It was 'alright on the night' as they say. 






32 comments:

  1. Hayley, a few tears as I read your blog today, know that feeling too, as I thought about my Elodie's future and family and all those issues you mentioned. Feeling for you at her Nativity as she plays Mary, she will shine up there i'm sure! Such a Sweetie ! Take care and Happy Christmas to you all , Vicky xxx

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    1. Thank you Vicky. She did shine and I laughed as well as cried. It was beautiful and we took it for what it was, a precious moment in time.

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  2. Hayley, I will probably have to email you. I'm sat here tears streaming down my face and feeling everything for Emily that you are feeling for beautiful Natty, and indeed for all those we know in a similar situation. Thank you for posting this, even though you made me cry more than any other blog has before :)

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    1. I'm so sorry but glad I am not alone with these feelings Paul. Much love to you all x

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  3. Oh sweetness, you never know what the future holds. There are families made up of parents with Down Syndrome and although the odds are against her, she may prove to be more independent than you think and go on to be happily married and have the grandchild your eyes are stinging for now. NEVER restrict your visions of the future, there is nothing to stop her, the world is her oyster and she has had the best start with one of the best parents she could have dreamt of. The way she is going she will be President one day. As much as I have spent years refusing to look to the future due to fear, I have realised recently that our Kyd has nothing holding him back from ANYTHING he wants to do as an adult. He is 11 now, and we are concentrating on and focusing all his attention on Independence in and out of the home. He WILL live independently and he WILL do whatever he wants to do... currently that is being Batman... we are working on that one! hahahahahaha. Nomatter what the odds are today... imagine what a difference the odds were 20 years ago.... and 20 years before that. Things change, life evolves and people like you will help make that difference to prove she can be what she is destined to be xxx

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    1. Thank you so much for this lovely message Alice. I will work harder on not restricting but also accepting what lies before us. I will live in the moment and enjoy that nativity play! Much love darling. Thank you for treading the path ahead so well. H x

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  4. I so get this - I myself would've loved more than 3 children, and now there's a possibility of no grandchildren as two of mine have special needs, and being the big sister to them has put off my third! I feel especially sorry for Smiley, as she would make a great Mum if her intellect was normal, but unless a miracle happens, it will never happen for her xx

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    1. It seems to be a very deep rooted and raw emotion for many of us. We just have to learn to accept down't we. H x

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  5. HAyley a beautiful post so written so it touches peoples hearts. I was told by a Junior doctor just after Matthew was born that he would never be a father. If that was said to me now my retort would be that is not because he has downs syndrome but because neither of my children will be having sex so thats an end to it!!!!! No woman will ever be good enough for either of my boys I'm afraid. Love sandy

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    1. Ha! Sandy, you make me laugh. That is quite true of course ;)

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  6. This post really touched me Hayley. The Nativity Play. I think this is so powerful. It sparks off so many emotions in us mums. I remember my mum having these feelings when they tried a new cancer drug on my sister and the doctors telling me and my mum that this would mean she would be infertile.Of course as her prognosis got worse this paled into complete insignificance. Rationality and perspective is irrelevant, it's so natural to look into your child's eyes and drift back and forth in time. I too had those momentary pangs in the early weeks over the loss of my daughter's (with D.S.) imagined children. It is good to disclose these depths of emotion and reminds us all that we can never assume we know how another person is feeling. We never know how their lives are or what experiences they bring with them to any one moment in time. Anita.

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    1. You are so right Anita, we must all deal with what life throws at us as it happens and always be conscious of the feelings of others. So many people make assumptions without thinking beyond their own experiences. Much love to you all x

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  7. None of us have a crystal ball. The future is as unwritten for your daughter as it is for you.
    Worry for today. Tomorrow will have enough worries of its own.
    You still have to get through inappropriate boyfriends and awful fashion choices!

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    1. You are so right and yes, we have the teenage strops to deal with first. Thanks for reminding me ;)

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  8. Beautiful heartfelt post hayley. Have many of these feelings myself as logan has autism but I agree with others, who knows what our wonderful children arw capable of! X

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    1. Who knows indeed. My understanding is that chances of fertility for Natty are low, but yes, where the world will take her, who knows.

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  9. This is such a beautiful and emotional post. And so eloquently written. I am sure Natty will be a wonderful Mary, and definitely don't forget the tissues. I'm contemplating Bounty, isn't that supposed to be super absorbent?

    I love the picture of Natty sheep :) I agree with others that the future is unwritten, but it can be so beneficial to discuss these feelings.

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  10. This is such a beautiful and emotional post. I am sure Natty will make a wonderful Mary, and definitely don't forget the tissues :) I'm contemplating some Bounty, isn't that supposed to be super absorbent?

    I love the pic of Natty sheep! It is so beneficial to discuss these types of feelings, both for self and others.

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    1. The bounty was indeed a top tip! It went well and I did not make a buffoon of myself. She was the perfect Mary in every way. And yes, I feel so much better having written about the fears and so many parents in the same boat have joined in sharing their similar feelings. H x

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  11. OH Hayley, I read this yesterday on my phone and have "walked away from" 3 of my replies.
    You *must* know I am here and your words are powerful
    because they carry your truths and thus recognize the truths we carry within ourselves.


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    1. Thank you Mardra. I know that what ever Natty's future holds will be wonderful and filled with love. Thank you for being such a supportive friend x

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  12. I often have the same questions about my autistic daughter, who talks about having children all the time. I try to make myself take the "one day at a time" approach. We don't know, any of us, what the future holds. I'm not trying to tell you our daughters might successfully have children. Rather, that they might have any number of futures. So hold tight to the bits of their present that are joyful. And chin up.

    ps - I'm going to have to tell you off just a little bit because you just made me bawl my eyes out in a cafe. I've had to pretend to several staff that I suffered a sudden onset allergy. Please ensure you either write far less beautifully, or that I am somewhere appropriate when reading your blog. Thank you muchly.

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    1. Sorry Liz! Ooops, I will consider a tears warning in future :)
      You are right, and since writing I have felt so much happier about the situation. The evening was wonderful and we all lived in that moment for what it was. H x

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  13. Everyone wrote me off having kids. I'd had two miscarriages a raft of undiagnosable "women's problems" and then finally I fell pregnant and gave birth to my tiny Joseph at 27 weeks. I'd written myself off too, to be honest. But here we are :) My health has robbed me of having anymore and Joseph would dearly love a sibling, but hey that's life.

    Natty is only a little girl you would be very cross with anyone who put limitations on her. Who knows what sort of woman Natty will be, none of us do. And maybe there will be love and babies.

    Even if there are no babies there will be love.

    And thats all that really matters.

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    1. Thank you Kylie. I think, in my understanding, that Down's syndorme comes hand in hand with infertility, so I guess I was coming from the angle of having to explain that to her one day. I fully hope and expect her to live with a partner or marry one day, and yes, there will be love. H x

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  14. Another one here, trying to type through a mist of tears.

    As others have said, no limitations on Natty, please. You only have to look at the pic of Natty teaching Max, to see the intelligence shining out of her eyes!

    Forgive me if this is old hat to you, but have you ever heard of Veras' Children? You should:

    https://iahp.org/Down-Syndrome-Veras-Kids

    Very best wishes to you and your family! Paul xxx

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    1. Thank you Paul. I was speaking more from an infertility point of view, rather than putting limitations on Natty, something we try never to do. But, yes, if she cannot have her own children there will be love and a partner and independent living, a job and fulfilment. That is what I aim for daily for her. H x

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  15. Who knows what she can do? I'm with Alice, don't unnecessarily limit your hopes. Part of acceptance is daring to dream big, have hopes and have raised expectations. l mean suitably raised standards. The only time it's not a good idea if Natalie is infertile.

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    1. My understanding is that most adults with DS are infertile, so I think that is what got to my heart the most, the fact that I will one day have to explain that. But I envisage/ hope for her living independently with a partner or friend, having a job and mortgage, hobbies and passing her driving test. It's good to aim high. H x

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  16. Oh Hayley. I don't know what to say, except that Alice is a wise young lady. X

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    1. She is indeed, way beyond her years.
      Who knows what the future holds, but I will now go with the flow.
      Thank you

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  17. What a fantastic role for her, I totally understand how torn you felt over this and the emotions it brought. I can't think of Ethan's future too much and if I do it's always in the worse case scenario as I'm scared to give myself too much hope. Not that you shouldn't have hope, it's more like a self defence technique in the wonderful world of emotions. My thing is that I can't see that Ethan will ever be able to drive, something that I feel is a natural thing to take for granted. I also question about him finding love, having a family, I have no idea if it is even possible. This is why I am teaching myself to take everyday as it comes, so it doesn't hurt me so much.

    I had a look at the photos, it looks like she did an amazing job and I know she made you proud.

    Thanks for linking up with Small Steps Amazing Achievements :0) (Sorry It's taken me a while to get round to this post)
    x

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