Published On: Mon, Sep 3rd, 2012

The Child You Don’t Expect – a special needs baby story

Danielle Mantakoul

Danielle Mantakoul

BA of Ed Early Childhood and Editor at Mummy Weekly
She's described as one of the most engaging & dynamic speakers in the early childhood industry today, now having educated hundreds of thousands of parents & teachers. She has lectured for organisations such as KU Children’s Services, Only About Children, Qantas, National Australia Bank, Child Protection Australia, Goodstart and hundreds of council & private centres. She also developed and ran the popular parenting series for the Australian Financial Review.
Danielle Mantakoul

The child you dont expectOh no, another new mum headed towards me. As we eyed each other approaching and smiled, both coffee in one hand and pram handle in the other, I wanted to walk faster, but no, it was not to be. For the fourth time that day, I knew once again there was no getting out of going into my poorly constructed “happy” routine. With her voice full of rainbows and lollipops she says “Oh you had twins too, isn’t it fun!” She had no idea.

I just couldn’t get pregnant. After 2 years of trying, Mark and I decided to do IVF. We were one of the lucky ones. First go, two eggs in and twins on the way. As the first few months went by all was well. It was at one of our midway ultra sounds that we were first alerted, that all was not as it seemed.

First the nice news, it’s a girl and a boy. Then, “we can’t seem to find the left kidney on the boy”. No left kidney? If only this was the case. The kidney issue remained the only concern throughout the pregnancy other than that of potentially coming early, which I did at 33 weeks.

She was perfect. As I looked at her through the plastic of the humidicrib, I could see many a happy days before me. She was sucking her thumb, just as she had performed for us at the numerous ultrasounds. The tiny butterfly dress she wore looked like it belonged to a doll. She was a doll, my doll, and my heart smiled as I stared at my Bella.

His beautiful round chubby face and a mass of hair. Aidan was the biggest of the two, though both still small enough that the 00000 sized baby clothes I had purchased were way too big. He made a lot of noise for someone so tiny, a kind of grunting, and I recall Mark and I chuckling whenever he would turn it on for us.

Bella opened her eyes fairly quickly, with Aidan soon following. It was when his little eyes opened, that my happy newborn baby experience would turn into a nightmare.

“One eye looks smaller”. I remember trying to explain to the nurses who proceeded to tell me that sometimes babies eyes stick together. These are medically trained people I kept telling myself, and yes I guess I do know that babies eyes can stick together, but…..  “hush” I told myself. But after lots of close up looking, comparing and viewing from other angles, I decided to call Mark and tell him my concerns. Now Mark is a no muck about kind of guy, so that evening after work when he came to the hospital he was straight on it. He took one look and confirmed my fear. Aidan’s left eye was smaller, considerably smaller. He didn’t ask the nurse, he told her, and politely asked if there was an eye doctor he could talk to. The eye specialist would be in on Thursday.

Once the eye doctor had been, he told us that Aidan was blind in his left eye and there was no rectifying it. We were then approached by one of the nursery doctors asking us to give consent to a chromosome test. They were not expecting to find anything, but wanted to check. Days went by and we forgot about the test, focusing on taking care of our new babies and looking forward to shortly taking them home.

I had just finished bathing Bella and Aidan when the doctor approached me.”The chromosome test results are in, they have found something. Would you like me to tell you now or do you want to wait till your husband is here”? Wait for my husband? Now who in the world would say “oh no don’t tell me now, I shall wait for my husband”?  No one that’s who!  Sheesh, if that Dr had any common sense she would have waited till I was home to call and ask us to come in. Instead, I found myself having to be picked up off the floor by the nurses and then have to drive myself home.

What she had told me is that my son was born with a chromosome deletion that no one else in the world had, and that there would be significant delays. Other than that, she couldn’t tell me anymore. She simply showed me a book which looked like it was from the 70’s, with a picture of a child in it who had a similar deletion.

What caused this? That uncooked meat where perhaps I didn’t wash my hands properly. The old house with the mould that wouldn’t let up. Picking the cat up and touching her nose to nose? The how in my head was relentless. I Google everything, create lists of questions for the doctors and document every little thing Aidan does.

We spent around 1 week of solid crying. It was then we made a decision not to cry any more, but to concentrate on the task at hand and not to let this steal away our happy new baby experience. Our babies would soon be coming home and we needed to be ready for them. To this day I am extremely proud of my husband and I that we have stuck to this. For us its all about the focus, and we chose to focus on what we do have. Our Bella was beautiful, perfect, and such a treasure, and our Aidan was our little angel that needed extra help.

This decision to be strong aided us in being able to get things done. For weeks, the change table that Mark’s parents had given us sat in its box begging to be opened, as we kept moving the box around the room. Something that was supposed to be exciting was now a chore. And maybe, just maybe if we didn’t open the box, somehow we could go back in time… crazy thoughts, but there never the less.

The picture above was taken on my first walk outside the hospital with Aidan and Bella. It was at this moment that I had felt the most normal since my babies had been born, and I just had to capture the moment. A snap shot funnily enough was also taken that day in my mind. I shall remember the feeling forever. It was so good to be out of the hospital room where I could just pretend to be like any other new mummy pushing her pram. Back through those hospital doors, I was the lady who had the child with problems.

When Bella and Aidan came home, we continued to see many professionals. I’m sure I drove my early childhood nurse, dear Penny Pink insane with my questions. Most of which she could not answer, but I kept asking, hoping that what she did not know one day, she may know the next. Of course I was expecting the impossible of her.

I managed to get myself to mothers group, told that it would be good for me. This was far from the truth. While other new mums sat there concerned about nappy rash, my thoughts were focused on things like, will my baby boy grow to ever be independent, and how will Bella cope having a special needs brother. As normal as their conversations were, it was too difficult to sit there and listen. I went once, never to return.

To see others with twins was painful, and I would avoid it at all cost. The twin experience is supposed to be such a blessing. It felt like being given a gift, but the present had been unwrapped before I had a chance to open it. Its not what’s inside, but its the suspense, surprise, anticipation, beautifully packaged box that we also enjoy.

There is the before Bella and Aidan me, and the after Bella and Aidan me. The me before the twins was more carefree, environmentally conscious, funny and adventurous. The after me is less concerned about the outside world, more mindful of what professionals tell me, far less funny and only adventurous in the backyard. I’m working on it.

When I look back at all I have just written, I am surprised with the amount of clarity that I can recall these events. You see for me they occurred around 7 years ago. For those of you with a special needs child, you too will remember the events of that time with clarity. You like I though, can learn how to simply remember them, and not just live in them.

By Danielle Mantakoul
Copyright 2012 Mummy Weekly
www.mummyweekly.com.au

 

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