As 2014 draws to a close, and the coffee creams are the only lonely chocolates left at the bottom of the Roses tin, it’s time to reflect on the year past. It’s lovely to look back to see how far Oscar has come but not only that, next week it will be a year since I first published my blog online. “Don’t be sorry” will be 1 next week!
When I think back to this time last year, I had just had Alfie (my second son). How I managed to start writing this thing with a tiny baby I’m not sure… I’m not kidding when I say I seem to remember I was in a sort of daze, wandering around trying to find my feet. I’m not great with newborns and find it hard, so last Christmas kind of just passed me by in a cloud of expressing and sleepless nights!
What I do remember (and seems all the more poignant as I look back) is that, as the whole family sat around on Christmas Day, our attention was turned to Oscar. He’d just learnt to stand alone. He’d been pulling himself up a while but this time, there were no tables to prop himself up on, no sofas to cling on to… Just him, standing there, all by his little self! I remember us all watching him with bated breath. Could he really manage it on his own? His hands in the air, his own breath held, he’d look for our reaction, and once he’d realised what he’d done, he’d smile, the biggest smile on his face and then he’d clap himself! His performance of course lead to our obligatory applause and yelps of delight. The whole family couldn’t have been prouder. I think back and can appreciate all the more now, that every milestone Oscar achieves honestly means so very much.
So looking back on 2014…
January was where all this began. The beginning of “Don’t Be Sorry”. What started out as way for me to document what was going on in Oscar’s life, a diary of sorts, I realised very quickly that by writing things down, it was helping me. I had actually started jotting things down when Oscar was a lot younger and it was a relief for me to pour my heart out onto the page. I could rationalise things that way. I posted my first ever blog on my personal Facebook profile, thinking that a few friends might have a read… Only to be blown away by the response it received. It was the comments and encouragement of those friends and family that persuaded me to keep writing and then to eventually publish it and create an FB page, Twitter account and this year, launch my own website. The blog has gone on to help others in a similar position, to help family and friends understand the challenges we have had to face, but also I’ve found that people, whether they have children or not, are simply enjoying reading about Oscar. It’s more than I could ever have hoped for. Crazy!
In February Oscar started walking! It was a major milestone for us. I remember vividly being in his paediatricians office when he was just 5 weeks old and her telling us that he appeared to have “very low muscle tone” and that he’d need regular physiotherapy. Within weeks he’d started his therapy. She helped at first with tummy time, side lying, prop sitting, sitting up independently, crawling (although Oscar didn’t crawl he was a bottom shuffler), pulling himself up to stand, standing alone to finally walking. At just 19 months, a lot earlier than we’d expected, Oscar walked. I cried. The happiest of tears. My boy had defied the odds and done it. That for me was a big step in me coming to the realisation that even if people said Oscar wouldn’t be able to do something, he and I were as sure as anything going to try to prove them wrong! It might take a little longer than the average Jo… But you know what, we’re ok with that!
March marked Down Syndrome Awareness Week and we donned our “odd socks” and I posed this photo of Oz. To my amazement it went on to get in excess of 2 thousand likes and our page a whole bunch of new followers. My little superstar!
In April we made the 13 hour drive to Switzerland for a family holiday. I learnt a lot of things that trip… But mainly that 13 hours in a car with a 21 month old and a 4 month old baby was literally the most ridiculous decision Chris and I had EVER made. We had a good time, but I can say with more certainty than I’ve ever said before, we will be flying next time!
May saw Oscar’s 1st Heart Day! A year since his open heart surgery and VSD closure at The Royal Brompton Hospital. A year on and a time to reflect on that life changing day. We were told the night before his surgery, that in the few short weeks since they had told us he needed surgery, the hole in his heart had got significantly bigger. If they hadn’t had operated on him, he may not have made it to his 2nd birthday. A roller coaster of emotion started that day. Nothing can prepare you for something like that. Mostly we felt scared. Scared that we might lose the baby that over the past 10 months we had fallen in love with. Until the point we had to leave him in that operating theatre, we hadn’t really known what love was or indeed how much we loved our baby with every inch of our bodies. That hospital gave him life again and for that, we will be forever grateful.
Back in June I wrote a blog that probably had the biggest reaction I’ve ever had on a post. It was called “Sometimes the smallest things take up the biggest room in your heart”. I talked of how I wished I’d had a crystal ball the night Oscar was born, so I could see into the future and see, that although different to the way I planned it, life now is pretty amazing and I really didn’t need to be quite so upset. I talked of how I felt then and how I feel now, which was just so completely different. The responses I had were heart-warming. Mothers and fathers of children with DS who said that they had felt some of the same emotions but hadn’t faced them and my words had hit home. Complete strangers, telling me that they were pregnant and that IF their baby was to be born with DS, now that they’d heard my story and seen Oscar, they wouldn’t be nearly so scared. Words of encouragement, support and understanding. But my favourite response of them all, was from NEW mums. Ones that perhaps like us, didn’t know about their babies diagnosis and who had found out at birth. Still grieving for the baby they thought they wanted, angry with the world, sad, sinking lower and lower but mixed with an overwhelming love for their new baby. Those responses. The ones where they tell me that in reading my blog they can see that they’re not alone and that someone else gets exactly how they’re feeling. They’re the ones that touch my heart and remind me again why I continue to write.
In July Oscar turned 2. A party with family and friends, a cake, a trampoline, singing, presents… Happy faces everywhere! Perfect.
The month of August was all about Oscar’s transition into mainstream nursery. I had spent weeks visiting various nurseries in the area, mindful that I needed it to be the right one for him. When we arrived at his now nursery, I knew it was right. They embraced Oscar, they included Oscar… they have been amazing with Oscar. When any mother leaves their child in the care of someone else it is always daunting but knowing that Oscar has additional needs that others may not fully understand, I had my reservations. I needn’t have worried, as he’s flying there. I truly believe his development has come on leaps and bounds over the last few months because he has had the opportunity to thrive there. His key worker has learnt and his continuing to learn makaton. His understanding and signing is really taking off. The nursery are well aware of his targets he has had set by portage, OT and speech and do what they can to assist him in these too. In all the times I have picked him up, I always try to watch him for a while before he sees me and he always has the biggest smile on his face. He’s genuinely happy there. What more could I ask? I mean, don’t get me wrong, this week I arrived and he had a different pair of trousers on, no shoes and someone else’s socks. The staff had been washing aprons after a painting activity and apparently Oscar had decided to sit in the washing up bowl fully clothed. So yes, it’s still a work in progress but little steps :0)
In September I received a MAD Blog Award for Best New Blog 2014. To say I was shocked would be an understatement. I think I just about held it together to blurb something out in my acceptance speech but I am just so thankful to all those readers that took the time to vote for me. The awards have not only opened a few more doors, it has also been so lovely to connect with other bloggers and an online community that now provide me with support and friendship. Never underestimate the power of social media.
October we dressed as an alien, a pumpkin and a spider for Halloween. I even made some pretty scary looking Oreo spiders. hashtagPROUD!
I’ve looked back at my blog posts in November, the last time I wrote and smiled. I talk of how Oscar has taken to pushing Alfie and am trying to figure out how best to deal with it. I’m smiling because so many of you were right. It WAS a phase. 6 weeks on and he’s not pushing anymore. Sure he’s still a little monkey at times but now Oscar and Alfie work together as a team. There’s no more pushing as Oscar has realised he’s met his match in his little brother. Don’t get me wrong, there’s still rough and tumble (they’re boys… that’s what boys do, right?) but they laugh together, and they laugh a lot. I love that they’re friends. And I know that in time, Alfie is likely to steam ahead in development, but for now I’m enjoying them just as they are.
On reflection, I look back on 2014 with fondness. In contrast to last Christmas, where he’d just started to stand, Oscar is now running around the place. A ball of energy that hurriedly rushes everywhere. Engaging, mischievous, determined and always looking for the next adventure. As I reread posts written throughout the year, I remember just how I was feeling back then. I’m relieved that those worries I had about Oscar have passed now. Happy that every month he achieves more and more. I’m delighted that the blog is still going strong and that people are seemingly still wanting to read about my little boy. I hope I’ve stayed true to my word and show the real us, warts and all. I’ve always said, life is good, but at times, I guess like anyone else, it can suck. Sure there are still worries… It’s just that I’ve come to discover that as soon as you overcome one fear about your child, another one crops up. That’s called being a parent, regardless of whether you have a child with additional needs or not right?
As we head into 2015 however, we have a stream of appointments with medical professionals ahead of us. Cardiologists, ENT consultants, Thyroid consultants, Speech Therapists to assess his swallow/reflux, hearing tests, blood tests, goodness knows what else. And while it would be easy to sit here feeling sorry for myself that this wasn’t the life I signed up for, I don’t. I feel thankful. Thankful that (touch wood) Oscar appears to be doing well. Thankful that he was born into a time where there is all this medical intervention and therapies to make him the little boy today. Thankful that every day, along with his brother, he brings so much joy and happiness into our lives. But mostly I’m thankful that I have been lucky enough to have Oscar in our lives. He has taught me more about myself, about life, about the value of family, friends, support and LOVE than I ever thought possible. So Thank You 2014… and 2015? Bring it on.
Happy New Year x