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…..”
“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…
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…..
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