I remember on Oscar’s first birthday, feeling an overpowering sense of relief. The month before, he’d had Open Heart Surgery and my baby boy was now home, where he belonged. He was well again and both Chris and I just felt so very grateful. Today however, the day before his third birthday, I feel somewhat reflective. I remember feeling this way last year too, for I recall that around this time three years ago, I had absolutely no idea my life was about to change forever.
When I think about the birth of my first born, I don’t ever remember feeling happy. Just that there was sadness. I felt anxious, angered and panicked. The only way I can describe the panic, is the same feeling I used to get when I watched horror movies, only on a much bigger scale. The sort of heart racing panic and fear you feel when you know something awful is going to happen and you just want to run. To this day I still can’t watch a scary movie for fear of my heart hurting the way it did that day.
Three years on, even though my little boy brings me more joy and love than I could ever have thought possible, thinking of the day he was born, I don’t think my heart had ever hurt that much. I think it’s sad in hindsight, that I didn’t have those initial happy thoughts. When I think back to the birth of Alfie, it was calm, it was relaxed, I felt elated. So as I’ve said before, if there’s a way I could go back and reassure the me back then, explain that everything would be as wonderful as it is now, then perhaps looking back on those first few photos of Oscar and me, I’d see happiness in my eyes, rather than this all encompassing sadness. The sadness, that in truth, took a while to leave me.
I can honestly say, hand on heart, that although at times over the last three years there have been a few low moments, for the most, we have had happy times.
When we found out we were having a boy at my 20 week scan, I felt a bit disappointed… I’d always wanted a girl. I had only ever imagined myself with a girl… So what was I going to do with a boy? At the same time, I remember worrying that my parents (who had had three daughters themselves) might have felt disappointed too. And by the way, this is no reflection of the type of people they are (they’re not at all that shallow), but they had only ever known girls too. So when Oscar was born with Down Syndrome, I remember feeling even more anxious that they might not be able to love him in the way I’d first imagined they would when I had first fallen pregnant. In hindsight, three years on, I genuinely think they love him all the more. Whether that’s the Down Syndrome and the feeling that he might need that extra special bit of love or simply that they can’t help BUT love him. Either way, I should never have doubted that they, other family or friends, would think any less of him than they would if I’d had a “typical” little boy. Seeing them with him, makes me so happy.
As we start the EHCP process (the process in which we work along side professionals to get Oscar the right support for school next year), having found a mainstream school that we’d love Oscar to attend, the love and support of the families around us in our community has been amazing. They are teaching their kids about acceptance and inclusion and when I remember that first Baby Sensory Class I took Oscar to when he was just a few months old, and the stares and whispers I felt were directed at my baby, I can now see that although not in my imagination, maybe the fact that I felt scared and embarrassed, meant that they reacted to us in that way. Maybe if I’d have been stronger and had held my head up high, perhaps everyone would have felt more comfortable. I can see that now but it’s been a process to get us here.
I worried about Chris and how he’d deal with having a son with a disability and you know what, he without question or doubt has been the most amazing dad to Oscar. I mean, there are times when he infuriates the hell out of me (who actually does a “financial forecast” on their expenditure every month?… we are polar opposites at times) But as a Daddy, he couldn’t love Oscar (or Alfie) more.
I worried in equal measure about going on to have more children. Would they have a good relationship? Would they be able to relate to each other? Would I spend too much time with Oscar and forget that Alfie needs me just as much? (albeit in a slightly different way – I’m still working on this balance). There were so many questions that have played on my mind, right from the very beginning but now, as I watch them grow together, I realise I was so right to go on and have another child. Their relationship is everything.
Sure, there are hurdles along the way. I was right to have expected that. The hours and hours of therapies for us to attend, the endless forms to fill in, a ton of appointments to get to. Doctors, consultants, medical professionals, therapists, the education board, there have been a lot. There have, of course, been battles to get the support he deserves along the way and tears shed (on my part) through anger and frustration, to get him what he needs. There are times, when we’re in a therapy session and he’s just not focusing and in those moments I have to take check and remember that he’s allowed bad days. He’s only three for goodness sakes. There’s been worry after worry about his development (again on my part) – Is he keeping up with his peers? Is he lagging behind? Am I doing enough to help him? Am I stifling him too much to allow him to grow? And I know that the reality is, that there will be many more years of this to come. But would I, for one second, change any of it? I honestly don’t think I would, for without all this, Oscar wouldn’t be who he is and I wouldn’t be the person I’ve become.
Last weekend, Oscar and six of his friends (who all have birthdays coming up over the next month) had a joint 3rd Birthday Party. Great food, great company, balloons, cake, games; it was fab. But it was there, as I stood watching Oscar amongst all his friends, I took time again, to reflect.
Three years ago, one of the things I couldn’t seem to get my head around, was worrying. Would he ever be accepted and loved? It sounds ridiculous but I could never have imagined him being as big a part of such a lovely group of friends than he is now, so seeing that they have never treated him any differently than they have anyone else in the group, to me, means the world.
To our friends there that day, perhaps all the things I saw, slipped past them unnoticed. They had their kids to concentrate on so why should they notice what Oscar was doing? To me though, even the smallest of achievements, that perhaps just a few months ago seemed so far off, became evident watching him at the party that day…
I watched as he sat patiently waiting for “Pass The Parcel” to start. He sat and observed what the others were all doing and keeping in mind the wait was for some time, (due to a little technical glitch with the music), he sat there with his friends (something he would have tired of easily before now) in anticipation that something fun was about to happen.
I watched as one of his friends starting crying and understanding that he was obviously upset, Oscar acknowledged this by going over to him and put his arm around him. There it was – Not only understanding but he was showing compassion.
I watched again as he sat beautifully for a photograph with all his little friends and didn’t once feel the urge to get up and charge off like he might have done just a few months ago.
I watched as he sat eating his lunch off a paper plate, calm and focused and in the 20 minutes or so we sat together, again he didn’t attempt to get up and wander off (something he would never have had the focus to do previously).
I watched as he waited at the little table with the rest of his friends so we could all sing “Happy Birthday”. He had looked up at me puzzled, I’m assuming wondering,”Mummy, why are we all waiting here?” I told him we were about to have cake and signed to him in Makaton. What happened next melted my heart.
I then watched as his friend Effie, who was stood opposite him, signed it again for him to reaffirm.
“We’re having ‘Cake’, Oscar”, she said and signed.
He smiled at her, then back at me and signed ‘cake’ back at us. He had understood. And there he waited some more…
But probably the most special moment for me, was when I sat down the next day and received a video clip of Oscar and his friends having a potato and spoon race. I watched the clip back and smiled.
I smiled because I wished I could have seen that clip three years ago today, for I am certain that if I had, I wouldn’t have felt nearly as scared or as panicked as I had back then.
I watched as he waited with the others with his spoon and potato. I watched as everyone set off for the race and he stood for a second or two, taking the time to figure out what the others were all doing. I watched as he set off with a huge smile on his face. I watched as he dropped his potato and carefully bent down and put it back on, just as he’d seen all the other children doing. I watched some more as he set off with more determination than I had ever seen in that little boy’s face, ever. He’d reached the other end. He stopped. Turned to me, as if to say, “What next, mummy?” and so I gestured for him to run back to me. He’d obviously dropped his potato by now but it didn’t matter. I then watched as he ran all the way back down the length of the garden to me waiting for him, grinning from ear to ear clearly delighted he’d done it.
He didn’t win the race of course. Oh and he definitely cheated by dropping the potato by continuing running anyway. And yes, you may notice from a couple of the photos, that he has my friend’s oven glove on his other hand (having decided it best I leave it on there, rather than face the battle of wills I could have had on my hands, for daring to deny him wearing it). To everyone there, this race was probably no big deal at all but to me, it was massive. I WISH I had had the knowledge I have now, of how many of those magical, poignant moments Oscar would bring to my life. Back then, I had questioned if I’d be able to love him enough, which seems like such a ludicrous notion now. And if I HAD known all that, then I certainly wouldn’t have let the fear of what I imagined, stop me from living for a while back then.
Three years on and Oscar is a happy, healthy ball of energy, who surprises me every day. Sure, I appreciate all of the above might seem insignificant and small, and of course over the year there have been some bigger milestones to document, but to us, every little thing he does and every hurdle he overcomes, means so very much. If I had had one message to myself back then or to anyone struggling with a pre or postnatal diagnosis of Down Syndrome, it’s that one day I realised I had woken up and I didn’t feel quite as sad as I did the day before. And had I known this, I wouldn’t have cried nearly so many tears.
“Keep your face always towards the sunshine and shadows will fall behind you” – Walt Whitman
Happy 3rd Birthday, Oscar. We love you x