14/08/2014 16:54 BST | Updated 22/05/2015 10:12 BST

I Can't Go Back To Yesterday: Cherishing My Child With Down's Syndrome

cheerful little baby girl with...

Yesterday, as I walked into the children's clinic, as I've done so many times before, I had an overwhelming feeling of emotion. I can't quite pinpoint that emotion; it was both happy and sad and as tears filled my eyes, I felt this huge smile growing upon my face.

Because as I walked in I was greeted with the sight of the cutest little bundle of joy I'd ever seen.

This little fella was poking out of his mum's blonde hair, just above her shoulder and with his huge, huge, blue eyes he stared deeply into my heart, unleashing this gush of emotion, as if he'd unlocked a door long forgotten.

Those eyes seemed so familiar, they looked at me like they'd seen me before. It felt so strange. It was as if something had just slapped me in the face and sent me back in time, like a film.

This little boy, with his huge blue eyes, had Down's Syndrome and looked the spitting image of Kyd as a baby. Something that I don't have much memory of, so it took me by surprise.


The almost surreal thing was that right next to him, was my 11-year-old Kyd, who I can't imagine being that small now. Whilst I stared down at him, with his MOD style hair and parker jacket, with a look of attitude on his face, I found myself asking...

Was he really that small, that innocent and new?

Obviously he was at some point long ago, and isn't it scary to think that once HE was that little bundle of blue eyed joy and that our journey was just beginning? Back then our hectic, mad world of Down's Syndrome had only just begun.

That brought me to the parents.

They looked about my age. They were smartly dressed and his dad had obviously just come from work especially for the appointment with his new son, because you could tell he wouldn't miss it for the world. They were buying a Jeans for Genes key ring at reception and as I looked at how happy they were chatting with the staff, I couldn't help but smile and wish I had had that support way back then.


I wanted to go over to them and say "He's so scrummy, I just want to eat him up!" but as I felt myself just about to say something, I stopped. I remembered that actually if that were me back then and at that stage of our journey, I'd have panicked if I was confronted by an older child with Down's. In fact, I avoided older children as much and as often as I could at the beginning, so that I didn't have to face the future.

I remembered that at that early stage, post-diagnosis, you tend to shut yourself off from the world. You forget about the future and you just live for that day, because the thought of tomorrow or the weeks or years ahead, is too much to deal with. Your hormones, feelings and emotions are more than they were during pregnancy. Every tiny bit of information goes in but can't be found an hour later for there is so much to take in.


You avoid every question about the diagnosis and reply with simple answers. You smile but, deep down, you're broken. You cry in silence every time you hear the words Down's Syndrome. You pretend that everything is fine.


Why? Because, you are scared if you don't people will judge you, when really they just mean well and want to be there to support you. Rational thinking seems to leave when you are dealing with this and you can't actually think of anything else but "Why me? Why him?".

Asking and answering questions seems to be the last thing you want to do. Well, that is what went through my head at that stage anyway, others might be different.

I so wanted to go over and say "How are you feeling?" or "It'll be fine", or "How are you coping with it all?", not because I'm nosey, but because I would love to know that they are OK. But questions and comments like that can come across as patronising or condescending to a new parent, however lovely it sounds in your head or well meaning it is.

To a new parent who has just been told their child is disabled or has special needs or will effectively be "different" for the whole of their lives, those words are often seen as pity or a conversation filler. Silly really, but it is just something that takes time to re-evaluate in your head and to gauge what is genuine concern and love and what is someone not knowing what to say.

Plus, remember sometimes you may have it wrong and the child isn't actually disabled or the disability isn't what you think it is. It is best not to assume out loud until they tell you different.



I must admit I hated all of those questions and phrases and words and looks of pity that followed the birth of Kyd. I struggled to answer without crying even the simple questions thrown at me. It was like I was in a test at school and nothing I could say or do was the right answer.


So I had the fear of failing at the same time as the desperate attempt and scramble to seem like I was coping and get those answers right... it was exhausting.

I can't speak for everyone, that is just what I went through. Some people love it when you speak to them about their child's diagnosis from day one; they are positive and ready for anything. But to judge which way that particular parent is going to feel is something not even they can often do themselves, as feelings can change from day to day.

Looking at this couple holding their baby boy so close and watching him gaze deeply into his daddy's eyes, made my eyes begin to leak and I was worried they would see.


I so want to remember those days. I want to jump back to when Kyd was that young and take a thousand pictures and video every second so that I can watch it again and again and never forget. Sadly I can't, and that is all lost and forgotten in a mist of anti-depressants and stress and all I have are the little memories that pop back when I see a baby with eyes that match his.

I have struggled to look at other babies with Down's in past years. I'm not overly sure why, but I think it is because I found it so difficult then. I find myself often wishing I could go back to the old me, back when Kyd was a baby, knowing what I do now and change my entire route and mind set on life to avoid the obstacles I've jumped over and banged into along the way.

If I could really go back to yesterday, I would smile at the parents of that gorgeous bundle of joy and say...

"Don't do what I did, or feel what I felt, cherish every moment and take lots of pictures, as the days go fast and the years go faster. One day you will look and think, how did he get so big? And with a blink of an eye that time will be gone. Stand back and smile, take everything in and always remember even during the hard times, someone, somewhere is worse off than you, everything happens for a reason and you'll be just fine".

It is funny how events that happen by chance can change you in a nano second. I believe I was meant to see those parents there yesterday. I believe that I was meant to remember Kyd as a baby and that it was a sign that that part of my life may be over and lost, but it is still there deep down. I believe this was a sign that there is a new me starting. A positive, forward-thinking, happy me. I'm looking forward to meeting her already.

I just want to head on over to yesterday before I saw that little ray of blue-eyed light and tell myself that my life isn't all that bad and that a glimpse of my past would tell me so.

But, as the famous quote from Lewis Carroll's Alice and Wonderland says...

"I can't go back to yesterday, because I was a different person then."

What can I say... I am Me... but that doesn't help you now does it! So here goes...
I'm Alice, I am 25 and live in Reading, Berkshire, UK. I live with my lovely fiancé, more commonly known and referred to as 'The Hoff' and my amazingly crazy son, who I will refer to as Kyd, 9, who has Down's Syndrome.

Blogs at: My life, my son, my way
Twitter: @Baillie_MyLife