My mind is racing and my heart is pounding.  I have written, backspaced, written, and backspaced enough times that the keyboard should now be imprinted in my fingertips…

Trying to find the words to express what my heart has been bursting to say for FIVE years…back to the day when my life was forever changed on a  journey which I would have never chosen had you given me the menu…..

Easy Road…..Hard Road…hmmmm, I’ll take the Easy Road thanks!  Sunny side up please!!

My second pregnancy was always going to be a breeze.  I had already given birth to my first daughter Olivia and thought once you have one, the rest is history!  History indeed!

I’ll fast forward and just say that the pregnancy itself seemed straight forward until about the 6 month mark.  I will admit to not going to many of my appointments as I felt fine and had had the infamous anatomy scan and everything was well and truly in it’s place.  When I did finally get around to an ultrasound there were furrowed brows, talk of short femur lengths, and the rude mention by one Dr of there being a possibility of my baby “not being compatible with life”.  Don’t even get me started on that one!!

“There is a lot of amniotic fluid surrounding your baby….more than normal.  This can be caused by a virus, for no apparent reason, or a genetic abnormality”.  Don’t get me wrong, I respect and admire Dr’s BUT there was no way that c) was going to the be ticked on this girls multiple choice selection!  I didn’t need a Dr to tell me that I had a lot of fluid….for WEEKS I’d had people telling me they thought I was having twins due to my belly being so well…..SWELL!!!  It got to the point where it was very uncomfortable and quite dangerous.  I would walk and the fluid would push on my major arteries, lowering my blood pressure and cutting off my breath and circulation.  I will never forget that feeling!

So, the long and the short of it fast forward me to the point where I am told that I should probably have a 3D scan as there may be a possibility of a genetic abnormality.  I have always lived my life with abandon, and in my mind, these things DEFINITELY did NOT happen to someone like me…..HELL NO!!

So it’s Valentine’s Day 2006 and James and I head off to Sharjah for our 3D scan in anticipation.  An hour of the wand being passed up and down my very swollen belly and the Dr stops “Oh, she seems to be missing a nasal bone”…..Panic, heartache…..can’t breathe…..what?????  What do you mean??  Will she be able to breathe?  What does this mean for us??

“Well this means she has a flat nose…..very common as a trait in Asians (hmmm, ok very sure that James is the father!), or she could be carrying a family trait, OR it sometimes is associated with Down Syndrome…..”

Silence.

Scan again……

“No problem with the heart, kidneys look good……ah….here we go…nose is fine…we do have a nasal bone….”

Relief…I breathe again even through my uncomfortable state and reassure myself that this baby …..OUR BABY is NORMAL and PERFECT.

We get to the end of the scan.

“Right, so no duodenal atresia, no spina bifida, no cardiac problems…..oh, and no DOWN SYNDROME by 90%.  You have a very healthy baby but I am concerned about your fluid.  I am going to suggest you are booked in for Caesarean section asap.  We don’t want your cord prolapsing and we need to get that baby out safely.”

March 1, 2006

We drive to The Corniche Hospital in  Abu Dhabi as it was decided that I wanted to give birth in a place where I knew they could handle complications.  I must have known….why did I choose to have my baby 150 km away from my home in Dubai?  Instinctively did I know it would be all too much for me to handle and that I needed time on my own to digest the whole situation?

March 2, 2006

When I think back to it, there was an eerie calm that fell over the delivery room as I entered it.  The epidural was put in place…..a large black marker drew a line where our tiny soul would emerge and our lives would be forever changed.  The room was very silent and I remember James looking quite funny in his hospital greens……and LOTS of fluid gushing……in fact the Dr joked that she should have had scuba gear on (ok, maybe too much information!).  Then the tiny, compact body that was handed to me….my little Ruby.  Perfect in every way.  I honestly did the once over….and kept asking “She’s ok….right?” only to get the reply “Yes, yes!! You have a gorgeous, healthy baby girl!”.

She was handed to me in the recovery room and it was very silent. I remember calling my parents…..and having this newborn baby snuggled up beside me, swaddled in a thick white towel…..just laying so peacefully…..

And the room was QUIET…..you could hear a pin drop!  They took her from me to weigh her….and still it was incredibly SILENT….I really don’t remember where James was at this point…..maybe he was with the midwife. He said he knew…..and it still blows me away to this day that I didn’t…..or perhaps I just didn’t want to know?

“Your baby is quite floppy” the midwife explains”And her circulation is not good so her temperature is quite low and we are going to take her to ICU with your permission”.

Ah yes!! That’s it!! She is COLD and they are worried about her, nothing to sweat about! I had worked in hospitals for long enough to know that these people have experience and that we were in good hands.  I didn’t feel an ounce of panic for Ruby going to ICU. If they said she needed to go, then who was I to question and her lips did look quite blue….

So I kissed my little princess and off to my room I was wheeled to have a rest.  I had enough experience to know that if I had a small window of opportunity to rest before the feeding took off in full gear then I shouldn’t complain!  We got to my room and the midwife came to speak to me.

“There is a chance that your baby has Down Syndrome, we are not sure, I mean, she could be mild……..if she has it she is mild as her features are not strong” (you have to understand that this midwife was from a lesser developed country and while I had faith in her skills to look after me and my baby, I don’t believe she was educated or informed about children with Down Syndrome).  Most likely she is just cold….her temperature is low”

I am Sagittarian.  The eternal optimist living in the land of the glass half full….ALWAYS!

Ok, so she’s a bit cold?  No worries….Down Syndrome? No!  The scan showed Down Syndrome to be ruled out by 90%.  How could I be the 10%?  Not a chance!  I was in denial, hoping and praying secretly for the nurse to come back in….

“Oh sorry, we’ve confused you with someone else….your baby is perfectly fine, normal and healthy.  Congratulations!!”

Instead, she returned with a bold statement “One of the consultants has just reviewed Ruby. They think she has Down Syndrome but they are still unsure.  The head consultant will review her tomorrow. If he says she has it then it is pretty certain as he has a lot of experience with newborn babies….”

I managed to convince them to let me go down to ICU to feed.  When I got there she had tubes in her nose and was  in an incubator.

I looked at her sweet face again…….this does not look like the face of Down Syndrome(or rather what I associated Down Syndrome to be in my ignorance…) to me…..this is the face of an angel….my sweet little angel.  The nurses could sense my resistance to the idea.  With each visit to the ICU I heard stories of “Oh, my niece has Down Syndrome and they are such lovely children. You’ll be fine!!” or “Oh kids with Down Syndrome love music!!” or “You’re going to have to get used to the idea of having a baby with special needs”……

I didn’t care what they said.  Ruby was mine and failed to see the “Special Needs” label in her and only saw her as special…I cannot describe the unconditional love I felt and the need to protect this little soul from the “labels” and “preconceived notions” that were already being dealt like a bad hand of poker.

I told James what they said as he had to go back to Dubai to be with Olivia but was returning the next day to see us again.  I will never forget the amazing support he provided when a text came through…

“No matter what the consultant says tomorrow, she is our baby and she is perfect.  Everything will be ok and we will get through this together”.

I so needed that…..even through my denial I guess I knew it was coming…I started to see it as more and more nurses kept talking about Down Syndrome.  I thought to myself that they see so many babies that there is bound to be some truth in what they are saying but why can’t I see it?? Or was it tunnel vision?

I will never forget the number of phone calls I got.  I’m sure my mobile phone got most of it’s mileage in those hours to come.  The calm before the storm so to speak….

“They think she might have Down Syndrome.  But it’s ok….we’re going to be ok. This is a blessing, she is a GIFT.” I told myself over and over again citing passages I’d seen in bad TV movies or read in the back pages of tabloid magazines.

So many people wanted to come and see her.  In a way I thanked my lucky stars that she was in ICU so that we couldn’t have many visitors and I had the time to digest what was to come.

They wheeled me down to the ICU and I clearly remember the lanky Dr standing over me, arms crossed in his thick Afrikaans accent…..”I have examined your baby and I am 99% certain that she has Down Syndrome”

“But is her heart ok??” I interrupted.  I wanted to press rewind and make him say the things I wanted to hear.  “It appears fine but we will need to have her scanned properly in the coming weeks.  I don’t quite think you understand what I’m telling you….”

Excuse me?  “I do understand quite well what you are telling me Dr” only to have him repeat himself.  He wanted tears, he wanted grief and sorrow.

Why? Because that is what you’re supposed to do.  You’re supposed to scream and cry and say you want to send your baby far, far away.

I was numb but I refused to give him what he was so waiting for…..

“I do understand what you’re telling me and it’s OK….We love Ruby and we will do whatever it takes to make this work. We just want to know that she is truly healthy”.

I just didn’t have it in me.  No tears, no turning back.  It was not yet my time to grieve.  I had a baby to look after and I was damned if I was going to let her down.

She was so precious and I just could not allow myself to think anything but that.  This was meant to be a joyous time in our lives and every time I turned around it seemed someone wanted to pull it apart (medical staff in their defined sense of what fits into the square and what doesn’t.  I’m not knocking it but I’ve been in that environment and there just isn’t much room for thinking “outside the square”).  I was fully determined to enjoy this baby as I had with my firstborn and no one was going to change that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

That first night of “knowing” I had so many thoughts running through my head.   I slowly retreated into protective mode.  I imagined scenario’s and the rebuttles I had perfected in my head when people made judgments.  I was going to be prepared.  No one to catch me off guard or rattle my chain.  I imagined opening the letter with the results from the genetic testing that had been sent to Germany for confirmation of our precious baby’s “condition”.  I could clearly see myself in 4 weeks time, opening that letter and shouting with glee “See James, I told you they were wrong!  Nothing wrong with our baby at all…..she is perfect!!”

And that really WAS how I saw her……PERFECT in that she was mine and that I really couldn’t see the label that had been thrust upon her.  I was caught between a serious case of denial and ignorance and wasn’t sure which way to go.  My mind was working overtime crafting how our child was going to be different and defy the odds of Down Syndrome.  I could hear people singing the praises of how our little girl appeared so “normal”.

What was I thinking??

It’s amazing to look back over how much I’ve grown over the past 5 years.  Some people say their defining moment in life was when they gave birth to their child with Special Needs….but mine?

No, mine did not come with a booming revelation of “This is your Life. The world is now a better place now that your GIFT has arrived.”  Instead I felt I needed to show that I had achieved “perfection” in so many other areas.  I started to overcompensate in everything that I did.

My kids suddenly had to be dressed immaculately and Ruby had to have the finest clothes. Looking back it was almost as if I was trying to “cover up” the fact that she had DS.  I started going to the gym and nearly killing myself with the intensity, trying to prove to myself that I had it in me to “succeed” all the while I was shoving down Lindt chocolate balls at any chance I could get to numb the pain.  This was my medication and my way to keep the emotions down in the bellows of my soul.

I had to have “new” clothing or jewelry at least once per week.  I shopped, ate, and exercised as a way to fill up my empty soul.  Don’t get me wrong, I LOVED this baby with every fibre of my being but the label of her DS possessed me with a vengeance to get my life back.  I wanted to be “that” person…the one who other people look to who “has it all”.

It’s so hard to put into words the tangle of emotions I experienced from the beginning to where I sit now.  It is such a complex web of ego fused with the soul struggling to find the person within.

This is how I felt in that first year……

A girl without a face or identity…..HIDING……behind a glass exterior searching to find the girl who knew that this is EXACTLY  where she was meant to be all along.  My thyroid blew out that year and I discovered I had Hashimoto’s thyroiditis…..they say in alternative medicine that your throat chakra is your TRUTH.  From what I know now, I firmly believe that my resistance to allow myself to FEEL the true emotions from Ruby’s birth brought this condition on.  I was nowhere near to being TRUE to myself.  Instead I bottled up those intense emotions and sought refuge in superficial joys.

I wouldn’t take that year back for one moment as it has helped shape and define my path in life.  Those first few years were the beginnings of a swelling tsunami of inadequacy that was constantly being churned by my ego, trying to prove that I was worthy.

Turns out it was not about me after all…..

 

 

 

 

 

 

 

This little girl has always been very happy in her own skin……..

For five years I have worn that Band Aid of hope, waiting to rip it off in anticipation to see how those wounds have healed.  I own every emotion to date and I make no apologies for any action or decision I have made in these past years.  They have all converged to a very special place where I allow myself to FEEL, to GROW, and to BE.

As I look back on my journey with this very special soul, I reflect on the many things that carried me through this journey.

The LOVE and SUPPORT was undeniably there….

Heartfelt messages from loving friends and family…

Team Spirit!!!

Thoughtful gestures from dear friends…

And the unconditional LOVE from a big sister who couldn’t see the label either yet didn’t own the doubts or emotions that I battled with and I am so thankful for that.  She was purity in the true sense where love has no boundaries and every moment is lived and every breath is taken FOR THAT MOMENT AND THAT MOMENT ONLY….

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

As I rummaged through a box which is completely unorganized, yet holds all of the dear memories from this treasured time, I was brought to tears when I came across these notes written by a 5 year old big sister…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

But it was this note that left my jaw on the floor…..It just amazes me how my then 5 year old wrote the perfect description of her sister way back then when I was lost…..

UPLIFTING.

To dizzying heights of pure giddyness and an emotional intelligence light years beyond that of any of us so called “NORMAL” people (whatever the heck that is!!)……..

And for all those cross eyed photo’s I deleted when you were a baby, trying to capture your “normal” face I apologize.  This one is for you Rubes….

Famous words from Bruno Mars….

Oh her eyes, her eyes, make the stars look like they’re not shining,

Her hair, Her hair, falls perfectly without her trying,

She’s so BEAUTIFUL….and I tell her every day.

When I see your FACE, there’s NOT A THING THAT I WOULD CHANGE. Cause’ GIRL you’re AMAZING, just the way you are!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

First day at school and new RED shoes!!

 

 

 

Happy Birthday Gorgeous Girl….

“Each day comes bearing it’s own gifts. Untie the ribbons”-Ruth Ann Schabacker

38 Conversations about
Imperfection IS Perfection

  1. Cathy Reply //

    Dearest Stephanie …. you amaze me, you empower me, you make me laugh and smile and give me energy ….. these are the gifts you give your daughters and the world … Ruby’s beauty is genetic and she glows in her own light! Happy Birthday RUBES!!! I don’t know you, but I love you! (and your Mommy) xoxo

  2. Aidy Reply //

    The story of Ruby…..beautiful Steph, I could see or clearly remember those things that you immersed yourself into. Such a journey for you and I feel that our family was so privleged to have been part of Ruby’s life for her first 3 1/2 yrs in Dubai. The “Phonics Bus” was tooting away before and I had to smile as I thought of the Rubster, wonderful memories of seeing her develop into a gorgeous, high spirited, extremely soulful person who will teach many of us some great lessons….which she has already started doing. x

  3. Catherine Reply //

    What a great tribute to Ruby….and to you! You are so courageous for looking within yourself and making the decision to change what you are not happy with. That is the key to a perfect existance for all of us I believe. Happy Birthday Ruby!! Love you sis…xoxoxoxo

  4. Nikki Boucher Reply //

    DS is just a label Steph! What matters is what beauty you see through your eyes. What a gorgeous story. So glad we have met and will get to know you more and more over the years xx

  5. Niamh Ryan Reply //

    Hi Steph from Ireland, What an inspiring tribute to Ruby. Have tears rolling down my face reading it. Am privilaged to have met Ruby briefly on one of my trips to visit Lorna. Well done Steph. Love to James Olivia, Ruby and of course yourself. Niamh x

  6. Nykie Grove-Eades Reply //

    Goddamit Steph…

    I wasn’t going to cry anymore this week…!! Now you have me sitting here with a cleavage!! (tears dripped on it!). I feel so weird with Miah turning 3 in a few weeks. Feels like a mile stone and I was going to wash over her birthday because someone once told me it was going to hard. You know, f**k that… bring on the party! My wee baby only turns three once!

    Nyk x

    • Nektar Reply //

      So many beautiful messages, it just fills me heart up and confirms that we do have it all and always have…..it’s just that our definition of “success” or “perfection” has changed. I feel so incredibly blessed to know so many amazing people who have experienced this journey with us. Thank you to each and every person who has shown Ruby the love and respect that she deserves over the years.
      @Niamh, of course I remember you and feel blessed to be friends with your sister who showed me support when it mattered.
      @Nykie, Damn Straight you gonna have a party for that girl!!!!! Can I come??? hahaahaaaa!!
      @Aidy, ohhh the bus!!! Press “A”….haha. The Battiston family has been a solid foundation as we traveled this amazing path. Thank you so much for being there when it mattered most….
      @Nikki, can’t wait to get to know you more too. We are going to make this one tight knit community together!
      @Cathy….one of my nearest and dearest friends who despite being far away is always close to my heart. Thanks for your love!
      @My sis….I am so proud to call you my sister and am so happy that we have strengthened our bond over these years. Can’t wait to be together again!! Rise up!!

  7. Stephanie Reply //

    Seriously Steph, I am bawling like a baby right now. Your words really touched me. You are an amazing Mom and this blog is such a tribute. Thanks for sharing your very personal thoughts and feelings – for me right now a lot of what you said was helpful to me for my own reasons.

    I remember when we met Ruby how I thought of her as a ray of sunshine – I still describe her as this when I talk about you/your family to others. At the end of the day, DS is just a label, it is her a whole that is who she is, which is an amazing, super special and strong little girl! I have always loved your attitude and approach with your kids. Like mine, they each have quirks and challenges, special qualities and are unique in their own way.

    Happy 5th Ruby, Kassidy is right behind you, LOL! We wish we were closer to celebrate with you, but are sending big hugs to all of you! MUCH LOVE!! xoxoxox….

  8. penny Reply //

    Happy birthday dear Ruby….happy birthday to you.

    So amidst the tears and turmoil, the angst, the sunshine days and the cloudy ones too, our wee ones just carry on doing what they do…living and loving and learning…pretty darn SPECIAL alright.

  9. Heather Reply //

    Oh this is so beautiful! I know we can all relate to different parts of this story and the road to acceptance. I felt the same way about Morgan when she was born. I was determined to have the smartest, cutest child that had ever had Down syndrome. I soon learned that there is so much more to life than an IQ test. You said it all so perfectly. And oh my goodness that little Ruby is such a doll! Happy 5th birthday Ruby!
    xo

    • Nektar Reply //

      Thanks Heather! God, there was so much more I wanted to say….so many things that happened in those 5 years but wanted to focus on those main emotions. We are not always true to ourselves as sometimes it’s just too painful to bear but ahhhh the freedom that comes with releasing all that! It’s amazing!! Your Morgan is just gorgeous and you are an amazing Mom, glad we have met!!

  10. Sam Ranwell Reply //

    Pass the tissues please!!!!

    Wow Steph – awesome, special words – I could relate to so much of what you said when you explained your emotion and denial in those early days. It really is amazing how we grow as Mother’s and people through our special wee angels!! I agree with the others – DS is only just a label Ruby is special because she is Ruby and she is uniquely beautiful and one of my favourite wee girls – those gorgeous big eyes and the way her emotions are written all over her face – she just lights up the room!

  11. Les Reply //

    Dear Steph I just read your story about Ruby and sit here wiping away the tears. It is a beautiful read about your daughter, for your daughter and I think you and James are a very special couple. You are one amazing mother who will inspire many as they read your blog. Ruby is adorable and I see what you say!!!

  12. Laura Reply //

    So beautifully honestly raw, you’re right. I feel so honored to have been allowed to read your story. Your transparency is inspiring. She is beautiful – as a baby and now, your sweet Ruby. Now that I am Amos’s mama, I find I always want to hug other people with DS, and tell them how proud I am of them. Wish I could give her, and her sister, and her mama – and tell each of you how proud I am of you, and how much I appreciate the footsteps you’ve left ahead of me on the path of this particular journey we all now find ourselves on, together.
    Thank you for sharing. Thank you so much. Blessings to you this day, and every day.

  13. Catherine (Kate) Bucher Reply //

    Hi Stephanie and Ruby
    Hope that school is great and we miss you so much Ruby!!! It’s just not the same without you. I spotted the pink lady cake in the photos (Still talking about it at preschool so I think you may have set the birthday cake standard there Stephanie). Im doing a birthday morning tea for Charlene this year and I thought I would try it out if its okay to share the recipe. I spotted the walnut crackers as well, I’ve been looking for a cracker base or biscuit and Ill try those out.
    It was great reading your blog, I loved the story of Ruby and its obvious how much you and James love your children, all three are amazing, they are all full of character and confidence.
    Hope you will visit soon
    Kate

  14. Cole Reply //

    So sweet- that’s so funny- when I hear that song I have the same image- well Abby’s face- you know what I mean. Thank you for sharing your sweet heart. I’m going to have to look back through your older pictures- I have a similar one of Abby to the one with Ruby’s sweet sleeping face leaning over/resting on your arm with her nose tubie- it reminds me of a picture of Abby posed like that and just a few hours old. hugs

  15. Jenny Reply //

    This was quite possibly the most beautiful post/birth story I have ever read! Had me in tears the entire time.

  16. Johanna Reply //

    WOW what a wonderful wonderful story to read. I have yet to experience the joy of Marriage and Motherhood but I am excited that when my turn comes it will be delicious.
    I follow Kelle Hamptons blog and LOVE reading about her 2 girls. Have you read it? http://www.kellehampton.com/
    It is really great. So glad I stumbled upon your blog – will definately keep following.

    • Nektar Reply //

      Thank you Johanna!
      Yes, I do follow Kelle’s blog and sent her the link to my story as she is part of the reason that inspired me to write it. While Kelle’s journey has only just begun, she has inspired many through her experiences with Nella and Lainey. Thank you so much for your lovely comments and I’m sure you’ll get to experience the joys of motherhood and it WILL be delicious!! Thanks for following 🙂

  17. Kathy Castor Reply //

    What a beautiful story. Loved the honesty, therein. You have a beautiful family. I popped after seeing a comment you made about gardens on my friend, Laura Luyt’s, post. I do not have a child with Down Syndrome, but I do have a child with other special needs. It is an elite group that we are in, I think. 😉

    • Nektar Reply //

      Thanks so much Kathy! Yes, a bit of an elite group indeed! We are blessed and it’s good to know that there is strength in numbers!!

  18. deeford622788911 Reply //

    Dear Steph,
    Ruby Ruby Ruby 🙂 A beautiful name for a beautiful girl…cant wait to meet her.
    To quote The Beatles, ‘All you need is Love’
    and as a mother we give this unconditionally.
    An amazing story of strength, joy and an inspiration to others Steph….
    With love xxxxx

  19. deeford622788911 Reply //

    Dear Steph,
    Ruby Ruby Ruby A beautiful name for a beautiful girl…cant wait to meet her.
    To quote The Beatles, ‘All you need is Love’
    and as a mother we give this unconditionally.
    An amazing story of strength, joy and an inspiration to others Steph….
    With love xxxxx

    • Nektar Reply //

      Thank you for your beautiful words. I still get emotional when I think about writing this post. I am privileged to have been able to have such a magnificent journey with challenges, triumphs, heartbreak, and comfort. Thanks for taking the time to be part of it! xxx

  20. Caren Reply //

    Dear Steph,
    I am in BSchool, have a Desire Map License and a Doctorate Degree. I honestly don’t know how I got to this dear page. Really. I was searching for what my business should be, what websites I like, how to fix my website, how to market hypnotherapy/coaching/desire and how to rebrand. Blah, blah, blah…Truth is, I am a middle school special education teacher in Los Angeles, California who LOVES teaching kids like yours. Kids that are unique and beautiful and give me lessons and gifts daily. Hugs…

    • Stephanie Hamilton Reply //

      Hi Caren,
      Thanks so much for your comment! I have been away from my blog for some time and looking at approaching it again as I love writing but just had a very long case of writer’s block! Good luck with all the above and thanks for taking time to read my story. Love and light, x

  21. Lilly Reply //

    Beautiful Stephanie,

    Words cannot express & the more we try to do so we loose the essence. You are truly beautiful to have created such a beautiful world for yourself. Ruby is so precious & the beauty in Olivia, who has chosen to be Ruby’s big sister is phenomenal in itself. You & James have 2 beautiful precious Angels. As they say here Masha Allah. Bless You. Love to you all & BIG warm hugs to Olivia & Ruby.

    Thank you for Being YOU

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