Our Blog of the Week this week comes from Alice who blogs at My Life, My Son, My Way.
Here she talks about her journey from young fragile mum of a baby with Down Syndrome to an slightly older but much wiser mother with a beautiful and very special son.
Yesterday, as I walked into the children’s clinic, as I’ve done so many times before, I suddenly had an overwhelming feeling of emotion. I can’t quite pin point 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, like 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 Syndrome and looked a spitting image of Kyd as a baby. Something that I don’t have much memory of, so took me by surprise.
The Painful Memories
The almost surreal thing was that right next to him, was in fact, the 11 year old version of Kyd, who I can’t imagine being that small now and 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 at that stage was just beginning… our hectic, mad world of Down 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 specially for the appointment of his new son, because you could tell he wouldn’t miss it for the world. They were buying a ‘Jeans for Genes’ keyring 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 only had that support way back then.
Finding the right words…
I wanted to go over to them and say ‘Hey’ and ‘ OMG 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 Downs. In fact, I avoided them 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 at this point 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 answer with simple answers. You smile although deep down, you’re broken. You cry in silence every time you hear the words Down 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 your train of thought when you are dealing with this and you can’t actually think of anything else but ‘Why me? Why him?’ so asking and answering questions seem 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 so patronising or condescending to a new parent, however lovely it sounds in your head or well meaning it is… to a new parent that has just been told their child is disabled or has special needs or will effectively will 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 gage 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 you think it is… it isn’t. It is best not to assume out loud in general and open with something more general until they tell you different.
Sometimes there are no right words…
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 even the simple questions thrown at me without crying. It was like I was in a test at school and nothing I could say or do was the right answer and 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.
Saying that, I can’t speak for everyone, that is just what I went through. Some people love it when you speak to them about it 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 and so this should be taken into account.
Looking at them holding him 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.
Going back to yesterday…
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 downs 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 buddle 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 from now. 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 at 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.’