Our Superhero Baby

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I have a cold cup of tea in my hand, my breakfast cereal is sat in a bowl on the kitchen counter untouched soaking up the last drops of milk and the toast is still in the toaster from yesterday morning. It can only mean one thing – we have a baby in the house.

He arrived on a lovely warm evening in Spring last year weighing a hefty 9lbs! Now ten months old I can’t believe it’s taken me this long to dedicate a post to him (or maybe I can when I consider how much sleep he doesn’t allow me!) Since arriving in our family he has been an absolute joy. His sparkly blue eyes and jet black hair give him film star qualities whilst the sleepless nights and dirty nappies bring us closer to reality.

Now, I know all parents believe their children are special. And they’re not wrong. All children are special. But we like to think our little boy is ‘extra’ special. We discovered how special he was becoming at our twenty week scan.

I was determined to enjoy this pregnancy after being pregnant with my daughter. It’s not that my daughter’s pregnancy was difficult or complicated by any stretch of the imagination. It was just being pregnant for the first time was a shock to the system, and I didn’t particularly like being ‘fat’! But this time round I knew I was capable of getting back to my pre-pregnancy figure as I did after my daughter, so I was making the most of flaunting my beautiful growing bump with tummy hugging clothes and was very excited about the forthcoming scan on 2nd January 2014.

The ultrasound department of the hospital was a familiar place to me. I’d been a few times during my daughter’s pregnancy for the standard twelve and twenty week scans, but they found some abnormalities with her kidneys so I had to have another scan at thirty-two weeks. Thankfully everything was fine and she had no problems with her kidneys after she was born. I felt they were just being extra cautious which is probably the best way to be with an unborn baby.

It was thrilling to see our wriggling, moving baby on the screen in the corner of the room. The sonologist struggled to get decent pictures because of how much the baby was moving which we took to be a good sign, “Baby’s got to have plenty of energy to keep up with it’s big sister!” my husband cooed gleefully. We could see baby’s strong heart beat moving rhythmically even before the sonologist pointed it out to us. I felt like I was on cloud nine. It hadn’t been the first time I’d lain on that bed in the ultrasound room since my daughter had been born. I’d been pregnant twice since but had unfortunately miscarried both times. So I was drinking in every moving image of this beautiful, living creature growing inside of me.

At the start of the scan the sonologist was reasonably conversational, talking us through the examination and the different parts of our baby he was checking. At one point I noticed he’d gone quiet and hadn’t moved the transducer (probe) from one part of my tummy for quite a while. I decided not to worry too much. I understood he was probably just concentrating as it is quite a complex examination, so I made small talk with my husband. Soon I realised the sonologist had called over a colleague to ask for a second opinion about something. They were speaking in hushed tones and were avoiding eye contact with me. That was when I realised that potentially something could be wrong.

After a while the sonologist turned to me and smiled. He spoke in a light-hearted way, trying to cover up any concern he may have had about the baby and told us in ‘layman’s terms’ that there was a part of baby’s brain that should be a sort of square shape but instead was more rectangular. This of course meant very little to us. I badly wanted to believe him when he said, “I’m 99.9% sure everything is fine.” But he was talking about my baby’s brain. It was hard not to be worried.

He referred us to a consultant and after a series of ultra sound scans, mri scans and meeting various different doctors and professionals across the country, on Monday 10th March 2014 our precious little unborn baby was diagnosed with a rare brain condition called Lissencephaly and Agenesis of the Corpus Collosum. The prognosis wasn’t good: seizures, developmental delays, physically disabled, mentally handicapped, limited life expectancy…

Understandably the news was difficult to take. Just like all parents, we had dreams, plans and ideas for our baby’s future: mountain biking with daddy, running round and playing with his big sister, enjoying school and one day maybe leaving home and starting a family of his own. Suddenly, in just a few words all those dreams seemed to be taken away from us. A new, unexpected future lay ahead.

I remember one evening soon after we’d received the news, my husband and I were sitting in the living room in quiet. My husband broke the silence, “You do realise what you’ve got growing inside you?” He had a serious look on his face that I had learned in our ten years together was his way of hiding his laughter and he was about to say something utterly ridiculous. I responded sarcastically, “A baby?” “No.” he said, “I’m pretty certain it must be a superhero!” I laughed curiously. He carried on,“Well, he doesn’t have his corpus collosum? Pah! What superhero needs one of those?! And all those folds and crevices in the brain? Only meagre humans need those. Yes, I’m certain. You’ve got the next Superman growing inside you.” He then carried on looking at his computer with a look on his face that I knew meant he was suppressing his laughter. I smiled and began to laugh.

Yes, he was right. Our little boy is a superhero. Superheroes save lives and our little boy has saved us from a ‘life less ordinary’. He’s made us think about the world and life differently and given us a life of extraordinariness. We have no idea what the future holds, but then, who does?

I can’t say that learning our child has profound disabilities is ever something that I will come to terms with or ever fully process. However, ten months in, I’ve certainly learned to take each day at a time and take joy in WHO he is rather than what he can or can’t do.

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Our happy baby boy!

 

I recently read this by another mum of a special needs child which I found helpful:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 c1987 by Emily Perl Kingsley. All rights reserved

 

 

 

 

 

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6 thoughts on “Our Superhero Baby

  1. You are awesome and so is your husband!! I love your outlook and what a great way for people to understand raising a special needs child – thank you for sharing the Italy/Holland story, I get it now!!! ❤ Much love to you guys. ❤

  2. Dear Emily,
    Our “superhero” with the same diagnosis will be 28 years old this July! God bless your days.
    (And your nights.) the sleeping gets better. 😌

    Mary Lou (and Joel)

    • Thank you for your comment. It’s lovely to hear from someone going through something similar. How amazing he’ll be 28 years old soon! God bless you all too!

  3. Thank you for sharing this. The Holland/Italy story is great. The journey we’re on with ASD is like that in so many ways, though our family and future will never be what I’d dreamed, I wouldn’t miss this for anything.

    • I’m glad you liked the Holland/Italy story. It’s so helpful in helping to understand the journey we’re all going through with our extra special children. Thinking of you on your journey too. xxxx

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