Obviously if I was documenting the series of events that happened chronologically, logic would say, that I’d write about what happened next. However, if someone is reading this that is currently going through something similar, I’d want them to know that life now is actually pretty special, I rarely feel sad and that they needn’t worry. Of course every parent worries, but those dark few weeks that rolled into months, in hindsight, were a very small part of this journey. Yes, I went a little cuckoo, I cried most days and for some bizarre reason, felt the urge to announce to complete and utter strangers that Oscar had Down Syndrome, just so it was out there and not an “elephant in the room” type situation, but things got better, I promise. So that’s the time I’ve chosen. It may sound bleak and if so, that’s because at that point, life was.
Oscar had been in Intensive Care for 10 days. He’d had a problem with his heart (more on that later), Hyperthyroidism, a dilated tube into his kidney and was struggling to feed. Not the best outcome but my god, did our baby fight up there in NICU. They couldn’t believe the progress he made so quickly, especially with a dodgy ticker and on the 10th day, the day the hospital confirmed he did indeed have DS (yes, it took them that long to get the blood tests back!!!!!!), we took our Oscar home.
When I think back to those first few weeks, it’s all a bit of a haze. I was experiencing such a mixture of emotions – Joy, that our baby was home with us but a sick feeling, in the pit of my stomach that I just couldn’t shake. Grief.
The day we left hospital we decided to call in to the supermarket to pick something up for dinner. We stupidly walked in carrying Oscar in the car seat and quickly realised, things would be a lot easier if we actually brought the pram in, so Chris went back to get it. Spot the first time parents!!!! While I was waiting with Oscar, out of nowhere came a voice “Hi, I thought you must have had him”. My friend Catherine. She was yet to hear we’d had our baby and yet to hear THE news. In the early months as I mentioned, I felt compelled to blurt out “This is Oscar, he has Down Syndrome” almost straight away. I don’t feel the need now but with Catherine, I just needed to tell her. I remember the feeling of panic rise in me. The feeling of dread at having to say it out loud to someone.
“Well, we’ve only just got out of intensive care, we were in for 10 days, he has a hole in his heart, a problem with his thyroid, a potential problem with one of the tubes into his kidney AND… he has Down Syndrome.
There it was. I’d said it. My eyes stinging. A lump had caught in my throat. What did I want her to say? I actually don’t know. I can’t even remember what she said as a response. Probably something lovely if I know her… But Chris interrupted us and the awkwardness was broken. That was to be the first of many introductions of my little boy, and one, I will always remember.
The next day we met our neighbours at the end of the driveway while taking Oscar on his first walk. Obviously keen to have a look in the pram, I remember cringing thinking, please don’t look at him. Please don’t judge us. Ridiculous now, as if anything, I spend my time wanting people to look at Oscar. When I take him anywhere, I can honestly say hand on heart, there isn’t one bit of me that feels ashamed of him. How very different from that first meeting with the neighbours. Again I felt compelled to tell them… again, that lump in the throat forms and I choke on my words.
My mum asked me the other day, What do you actually want people to say when you tell them? What would you have said to someone before you had Oscar? And if the truth be told, I really don’t know. She reminded me that in hospital, a lady I’d met said, “It doesn’t matter, he’s still your son, you’ll love him all the same”. And I guess it is that kind of response I want. Positivity People, Positivity.
Now I don’t profess to be the next Shakespeare and there’s been more than one occasion when I’ve definitely said something ridiculous, but my goodness, people say some really stupid things.
Two days after leaving hospital with Oscar, an acquaintance(i wont call them a friend) said “perhaps it was something I did late in my pregnancy that led me to have a child with DS”. I didn’t have the strength to turn round and set her straight at that point. And how different my reaction to this would be now. Do people really think it’s something i did during my pregnancy? Did i eat too many raspberries? Wear my belt too tight? It’s times like this, i wish people didn’t open their mouths.
I remember going to see my Grandad around the time that oscar was about 10 months. Oscar was sat on the floor and grandad in the chair and they were rolling a ball between them both. Very cute. After some time Grandad stopped and looked at Oscar for a while, then turned to me and said “He doesn’t seem backwards at all, does he?”. Of course he meant no offence by this. He meant that Oscar was doing brilliantly at the game and responding to him well. but there it was. The stigma. The perception some people have of people who happen to have DS. I didn’t take offence but it’s something thats stayed with me all these months later. unfortunately Grandad passed away late last year but I am thankful that he had the chance to meet Oscar and perhaps his opinion was altered for the better. I do hope so.
When Oscar was about 5 weeks old I had to take him to the doctor for the first time. He had a bit of a cold so I decided it was best to get him checked over. Admittedly I had felt some apprehension going to the surgery, as I was still struggling with coming to terms with it all. I knew he wouldn’t have necessarily read his notes. He was quite an up beat doctor and seemed friendly enough but when he sat and read through the notes on the computer screen, he started to read out loud… “Trisomy 21, ASD/VSD Heart Problems, Hyperthyroidism… Wow, this is a medical students dream isn’t it?”. My blood boiled. It might be a medical students dream to come across all these issues, but that’s my son you’re talking about, is what I wanted to say!!! He then proceeded to ask me if I’d known about the diagnosis before Oscar was born. When I said No, he said “ Really? That’s bizarre, it’s usually picked up.” Again, do we really think this is helpful? It wasn’t.
I refer back to the moment the doctor told us she suspected Oscar had DS. “Your baby is showing signs of facial dysmorphia” Now this was an intelligent, well educated paediatrician, who I’m sure has had to deliver this kind of news before. You’d hope they’d have a softness about them. An understanding of how those parents might be feeling at this delicate time. But she didn’t and she was cold. But dysmorphia? An appropriate use of terminology? I have the utmost respect for all the medical professionals we’ve met along the way so far but something that bothers me, is that some can be so black and white. Some lack empathy. Maybe they don’t have the time? Who knows? I just think in this instance, she should have been mindful that she was talking about my baby.
“Did you have the tests?” – Numerous and I mean numerous people ask this question. Consultants, GP’s, Joe Bloggs on the street. I actually have no issue with people asking it. I have asked other parents of children with DS. What I draw issue with, is when I say we DID have the tests, it wasn’t detected and we were even considered low risk, they always say “Really? How unusual”. This is just an annoying response. First of all, of all the parents of children with DS that I’ve met recently, i’d say the majority didn’t actually know. Maybe thats because, of those that have it detected, around 90% chose to abort. Sad but true. And while we’re on the subject, It’s also very inappropriate to ask what we would have done if it was picked up. It’s personal and each and every one of us couldn’t possibly know until we’re in that situation. I know what I think I would have done. I also know for a fact, I wouldn’t change Oscar for the the world so why are we even having this conversation. YES the doctor at that first surgery visit asked me if I would have kept him, had I known at my 12 week scan. Seriously.
“I’m Sorry”. A standard response when I tell some people Oscar has DS. Don’t be sorry. There’s really nothing to be sorry about. I’m not sorry. If he was any different, he wouldn’t be Oscar, so please don’t say it.
At a party last year, a friend of a friend asked how Oscar was doing. I’d only met her a couple of times but she seemed nice enough and I knew she’d literally just had her first baby. “So, have they given you any early indications?” She said. Being unsure of exactly what she was trying to get at, I said “Sorry?” “I mean, have they given you any indications of just how mentally retarded he’ll be” Seeing my face, she quickly backtracked and changed retarded to “I mean mentally disabled”. Yep. She REALLY said that. I figure, it needs no more explanation. In this day and age, people are still using this type of language. I couldn’t actually believe it. Driving back home from the party that evening, I thought of so many quick witted responses that I wished I’d had the guts to say. I also thought how pleased I was that Oscar was given to us, as what kind of chance would he have had with her as a mother and role model. We always talk about the positives of what our children CAN do, never what they can’t. To use the phrase mentally retarded is just completely and utterly unacceptable and I bet if she spent a day with some of the incredible children I know who happen to have DS, she’d see just that.
Finally, we were in the doctors surgery the other day and a lady came over to the pram and started talking to us. At the end of the conversation she said “Can I ask you a question?” (Here we go, I thought) “Yes of course”. “Has he got a little bit of Down syndrome in him… My brothers got a little bit of Down syndrome in him too”
My polite controlled self, simply said, Yes he has Down syndrome but inwardly I found her hilarious. A little bit? Your brother either does or does not have DS. He hasn’t got a “little bit” in him. Where does she think this “little bit” is? His left toe? Some people are so very strange. You’ve got to laugh.
I’m not sure if I’m super sensitive to it or maybe just more aware of what comes out of people’s mouths these days but particularly in those early months, I was very aware of people’s reactions and what people said. I’m going to quote Tom’s article here, in that I too believe its not them being mean or heartless. Or at least I hope it’s not. It’s perhaps a lack of understanding or education on the subject.
For the most part I have been blown away by the warmth and kindness from those close to us but perhaps more touchingly so, by strangers. People seem drawn to Oscar and go out of their way to say hello, making us feel an enormous sense of pride as parents, that we are truly blessed. The people that say the silly things, are in the minority and we try not to dwell on their ignorance. Someone once told me just after having him, that we will need to look out for him now, probably forever. He will need his corner fighting for him and that is what, I wholeheartedly intend to do.
The major turning point for me though was at 6 weeks. An acceptance and a chance to get my relationship with Chris back on track. I’ve mentioned previously the utter disbelief I felt, that he could grieve for what appeared to may be about a day, then be 110% ok with it all. How was he not more upset? How could he be gardening? (yes that gardening thing). So when Oscar was 6 weeks, we decided to take a holiday and get away. The relief was immense. The escape was what I needed. So very far away from home and gave us the time we needed. Time for Chris to get to know his son. Time for me to breathe. We also had a lot of time to talk. We needed to find “us” again… because somewhere between 7th July and now, we had lost “us”. We talked long and hard. We listened. We didn’t interrupt. And it worked. We found each other and even though we’re far from perfect, (he still does the gardening at very inappropriate times ;0) we decided then that we would do everything in our power to make Oscar the best he could possibly be. We were united on that. After that holiday I came home a different girl. Don’t get me wrong I still have the odd wobble but for the most part, there’s true genuine happiness… And when people say stupid things, we try to laugh.