I’ve spoken about Chris before. Chris is my husband; Mr Social. He loves people. He loves life, in fact. He loves sport. He loves beer, perhaps a little too much. But his energy is infectious. He’s the person who makes me laugh every single day. He’s the person his friend Tom describes as “The guy in the room that everyone wants to talk to”. And I love that. He’s also the guy that drives me insane sometimes. He has major OCD. He can’t multitask for love nor money. He genuinely believes he’s a better dancer than me and does anything to prove it (see below YouTube clip), He takes FOREVER in the shower, when I’m lucky to get 3 minutes without fear of Oscar climbing on the toilet or opening the shower door to get in fully clothed. *sigh* He’s the type of guy though that I admire – he works in the city for a bank and by all accounts has worked hard to get where he is today. He’s run across the Moroccan desert doing ridiculous marathons, he’s cycled up mountains on a regular basis and it’s not unusual for him to announce over dinner on occasion, that he might quite like to go to Germany to do an iron man next month or climb the Matterhorn with some friends. Ridiculous and insane but for all these things, I love him.
I remember when we found out at the 20 week scan that we were having a boy. Chris was beside himself with excitement. He wanted to call EVERYONE to tell them. We knew, even before arriving home, that that our little cantaloupe (Loved my “what fruit is your baby this week” app) in my belly, was to be called Oscar. So much joy. So much excitement. Life as we knew it though, was about to change.
Chris is four years my junior. So when I had Oscar my first thoughts were that I’d let him down. That it was my fault because I was older. I worried in the beginning that Chris was disappointed that I’d given him a “less than perfect” son. In those early days, I worried that he felt sad that maybe Oscar wouldn’t be able to keep up with him on the bike, or score a winning try in rugby. I felt I’d failed, but I felt I’d failed HIM especially.
The thing is though, at no point has Chris ever done or said anything which made me feel like I’ve failed. Never has he ever expressed anything other than pure, unconditional, complete love for our baby. Sure, in those first few hours, when he’d been born and we were given Oscar’s diagnosis, he cried. He cried hard (I’m told he sobbed when he called our families). But then, the tears were gone. While I quite literally was a crumbling mess for some weeks, he had grieved, accepted and moved on.
Chris – “We can’t change the situation, Juts (his name for me), we just have to carry on.”
I remember back then being frustrated with him. How could he be fine with it all? I’ve said it before, but how could he be outside doing the gardening, when I felt (ridiculously) that my world was falling apart. How could he be back at work after paternity leave, seemingly fine? A lot of family and friends speculated. ‘He’s in denial, Sarah’, ‘He hasn’t accepted Oscar’s diagnosis yet’, ‘He’ll crack eventually’… I listened and waited… But you know what? He never did. I sat down with him when Oscar was a couple of months old and asked him if he felt like he was bottling things up, but he wasn’t. And it was then and only then, that I believed him.
Ok so I have just read that back and maybe I’m sugar coating him a little. There were times in those early days where he got pretty peed off with me. I was on a downer and he didn’t know how to deal with me like that. He’s a man’s man. He can be sympathetic but only for a while, then he just gets frustrated that I’m still blubbing into my pillow (dramatics has always been my strong point). In those early months, times weren’t great between us, if I’m honest. Men and women are very different creatures and deal with things very differently. Down the line, when we both understood this and we could see each other’s sides, we accepted each other’s way of dealing with it all. But it took time.
I decided this week, that I have waffled on for months now, telling you my thoughts and feelings… So why not tell it from HIS side.
One evening, I asked Chris if he’d mind me interviewing him for my blog. He looked at me a little puzzled at first.
“You want to interview ME for your blog?”
He looked bemused but agreed (only if I didn’t mind having the World Cup on, on mute, rather than off completely) then he’d be happy to do the interview. It was interesting. When you sit down and REALLY talk, you realise each other’s most inner, most deepest thoughts.
Chris talked first about the night we had Oscar and how he’d felt when they’d whisked me away to have an Emergency Caesarian under general anaesthetic. Oscar’s heart rate had dropped dangerously low and they had to get him out fast. Chris spoke of how he’ll never forget the team rushing out the room and the swing doors closing behind us, swinging back and forth, with him standing there alone. He said he’d never felt so scared. He was escorted shortly after, to a medical bay, where there was no bed, just a space where I should have been. It was around 1am now and was pitch black. He stood there and cried. He said he was in pieces.
“What if we lose Oscar?”
“What if I lose you?”
“What if I lose you both?”
“They’d taken my wife and my unborn child away and I could do nothing.”
He said it felt like an eternity till I came back… but I did. He talks of me lying lifeless on the bed and attached to goodness knows how many wires. And then they brought Oscar to him. He was peering up at him through the bundle of towels. A moment in time, after all the hysteria and panic, when it was just Oscar and him. He’ll always remember.
He continues to talk about how when we were told Oscar’s diagnosis, he felt scared. Gutted in fact. And definitely fearful of the unknown. He knew nothing about Down syndrome. But said he quickly resigned himself to the fact, that life for Oscar, will be what we make it.
“If you think too far into the future, you’ll miss the present and wouldn’t see just how awesome he is now.”
I asked him about those early days, when I had felt he was bottling things up.
“The reality is I was just trying to crack on with life. I was aware I needed to be strong for you. We HAD to be strong. We had to get on with raising Oscar. Life doesn’t stop. I know you were cross with me for being outside sorting the garden, but I felt I wanted it sorted for when the boys were old enough to enjoy it. I was also aware, there was no point us both sitting here, feeling sad and sorry for ourselves. You needed me to be strong so I got on with life.”
When asking him about the moment he knew he truly loved Oscar, we both agreed it was when he went in for open heart surgery. Obviously there were times before then… Private moments between them both. Rocking him to sleep. Giving me a rest from all the night feeds. When Oscar started responding to us, mimicking our sounds and facial expressions. But the heart surgery was one of those life shattering times, that losing him didn’t even bare thinking about. We couldn’t lose him, not when we’d only just realised, that we wanted him more than we’d ever wanted anything before. Oh the irony.
I asked him if he worries about Oscar. After some time, he answered.
“Short term I worry about the pressure on his lungs,”
At the moment we’re waiting for The Royal Brompton Hospital to get back to us with an appointment for Oscar to do a sleep study, to find out why his lungs are under strain. They suspect it is due to sleep apnea, where people with DS are more susceptible to stopping breathing in their sleep due to their narrowed airways.
“I worry about his health, obviously. But long term, I worry about him being a victim of bullying. People can be horrible. Kids can be horrible. How will we deal with it? How will Oscar deal with it? I don’t know”
I also asked Chris, what is proudest moment was and he said that Oscar makes him proud every day. Probably the most memorable though is when he started walking. Anyone with a child who has Down syndrome will understand, there is no greater feeling in the world, than when our kids do something that we’ve been working on for a while, for the first time. Whether it be feeding himself with a spoon, or signing “milk” and “finished” for the first time this week for example… Our hearts could literally explode with pride for our boy.
We talked more about when people stare at Oscar, how it makes Chris feel. Ever the optimist, he said he’s pretty sure most people stare because he’s a really cute kid and on the whole I’d agree. He did go on to say that if people do, it may be out of intrigue rather than meant as an insult. We both said, that we are lucky that Oscar has been born in this day and age, rather than 50 years ago.
We spoke about Alfie and the effect having Oscar as a brother would have on him. We love the connection the two brothers have already and said we hope it continues to grow. How do you think Alfie will deal with having oz in his life? I asked.
“When the time comes, we’ll sit Alfie down and explain to him.”
And then Chris asked me…
“When will Alfie realise that Oscar is a little different?”
I thought perhaps around 6? Chris went on to say he would sit Alfie down and “Outline his responsibilities. With us, you are now effectively the older brother. For the rest your life you will need to look out for him… I mean, You don’t say that to a six year old… That’d shit him right up”… My husband, ladies and gentlemen, eloquent to the nth degree ;0)
I told Chris that when the paediatrician had delivered the news, “I’m sorry, we suspect your baby has Down syndrome”, I felt like I’d massively let him down. All I had ever wanted to do, was give him a son that’d excel like he had, in business, sport etc. I asked him, What would he say to the person back then that felt like that.
“What I’ve come to realise is that Oscar makes our lives so much richer. It’s taught me about patience. It’s brought you and I closer together. I now appreciate the small things. The small steps. I’m happy taking our time so that’s what I’d tell you.”
“I knew very little about DS back then. But now? I’m learning all the time. I feel optimistic for his future. Oscar’s development is a journey and I’m enjoying every step of it. I don’t worry about the next step, I enjoy the now. I never could have imagined how much Oscar brings to our lives. He’s a hoot to be around and I love that everyone loves him as much as we do. So he might not excel at rugby… I don’t care. I’ll give him every opportunity I can to help him score that try.”
Finally I asked Chris what his biggest fears for Oscars future were – he thought for a long time about this question and couldn’t come up with an answer. Seriously? You have no fears for his future???? I felt frustrated with him. This is a stupid interview I thought. Here I was, trying really hard NOT to worry about the future myself, but there’s nothing he’s fearing? Not phased at all apparently. I know, it’d be a nightmare if we were both the same. I guess Chris keeps me grounded and focused on the here and now. When I worry, he listens to me and tells me everything will be ok but right now, I was annoyed he was being so laid back. He could sense my frustration…
“Well what are your worries for Oscar’s future then, Juts?”
“Me? One of my worries, is that I want, more than anything, for Oscar to live a fulfilled, amazing life. I want so much, if he can manage it, for him to live independently for example.”
He sat there, taking it all in and then said with more truth and honesty than I’d ever heard him speak…
“I wouldn’t care if Oscar lived with us forever. In fact I’d love it if he did. If he moved out, I think I’d be really sad when it comes to him leaving.”
I smiled. In that one statement, I remembered again, exactly why I love him. I wondered if he fully appreciated the bigger picture and how all this early intervention is to help Oscar strive. I wondered if he realised just what our end goal is here. So he didn’t fully get it. I didn’t care. Maybe I do enough worrying for the two of us anyway. When he said that last statement, I realised that my husband loves our son more than anything in the world. And with that love, I know that Oscar will be just fine.
“Can I turn the football back up now?”
(As promised, evidence of Chris’ love for dance… Our first dance at our wedding back in 2011… Oh and it was HIS idea to put it on YouTube, he was THAT proud ;0)