In the weeks and months that followed, I was very keen to get back to normality. I was on maternity leave from work and I wanted to do what other women on maternity leave did. That’s always been my wish. Just to be normal. So, I threw myself into life… getting to know my baby, meeting friends old and new, drinking coffee and eating far too much cake. Watching the odd episode of Jeremy Kyle (which for the record, is just dreadful) and of course, joined the obligatory “baby groups”, that we as mothers feel we should – Baby Sensory, Music, Playgroup etc. If I’m completely honest though, in those early days I found these groups difficult. I’ll explain.
Before I go on, I need to mention another piece of writing that featured very prominently around this time. It had been read out in one of our NCT Classes. We were asked if we wanted to discuss it further and understandably, the six expectant mothers, breathed a sigh of relief, as we moved on without putting too finer point on it. At the time, I dismissed it, put it to the back of my mind but now, as I lay in that hospital room with my newborn baby upstairs in NICU, it was poignant and thought provoking…. in a word, a relief. It was written by Emily Peri Kingsley, a lady who’d had a child with a disability, herself.
“Welcome to Holland”
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.
“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
I guess a major factor for me in the beginning, WAS the comparisons. The comparisons I made between a “typical” child and my child. Comparisons of what was and what could have been. The comparisons between Holland and Italy.
As I’ve mentioned them, I’ll talk first about my NCT group. Chris and I had attended the group leading up to the birth and had really looked forward to going each week. Looking back I don’t think we took them all that seriously. Sure we covered all the basics, but it was also a time for us to get to know the 5 other couples taking part. On first impressions, they all seemed very nice but as we drove away after our first class, I turned to Chris and said “They’re definitely professional types aren’t they?”. They’ll laugh when they read this. What I mean is, being a full time dance teacher at the time, they all had “proper”jobs ;0). On first meeting, if I’m brutally honest (which people keep telling me I’m being in this blog) I wasn’t sure I’d have anything in common with them? But, I can honestly say, these 5 girls have been incredible and such a massive support. I think any group of likeminded people going through the same sort of things, babies not sleeping, babies not feeding, babies with colic, babies with a cold etc etc etc, just get it. We use to email each other at ridiculous hours of the day, messages flying backwards and forwards with help and advice. I was the first to have Oscar and after being given the probable diagnosis, I was adamant that I didn’t want them knowing until after they’d all had their little ones. I didn’t want to upset them but more importantly I didn’t want them to panic about their own situations. I’m not going to lie, it crossed my mind more than once. Why us? Why did WE have the baby with DS? Some of them are definitely older than us? (Sorry girls) Seems silly now. But in those early months i remember holding on to a lot of anger. No I don’t want to celebrate the fact that your babies on solids already and that your baby can pull himself up. I remember thinking, that maybe I couldn’t face being friends with them after all. I never told them that. Their circumstances had all worked out perfectly as planned. Mine hadn’t. There were times I’d receive an email, about how amazingly well their children were doing, and I felt sad. BUT, very quickly that feeling passed. At no point were these girls trying to rub it in. If anything, I think they sometimes felt like they had to walk on eggshells, so’s not to gloat about their little ones latest achievements. So instead I celebrated with them and I clapped when their baby crawled because that’s what friends do. I stopped with the “woe is me” crap (excuse my french) and remembered just how frickin amazing every milestone is that Oscar achieves. So he was a bit later sitting up. Who cares… he did it. One thing I’ve come to realise is that these girls have celebrated every milestone of Oscars with us. And who’d have thought i’d be friends the Marketing Manager AFH Coffee and Hot Chocolate at Mondelez International hey? Very professional ;0) The 6 of us have all well and truly bonded over the love for our babies. These girls have never once looked sorry for me or made me feel like I was any less of a mummy for having a child that may have taken a little longer than their baby to roll over or clap their hands. I have only ever felt warmth from them all. And for that, I will always be grateful.
A charity that have become a massive part of our lives, is PSDS (Parents Supporting Children with Down Syndrome). They have been instrumental in showing Chris and I, that everything really will be ok. That just because you’ve had a child with DS, doesn’t mean you won’t go on holiday, won’t go on to have more children, that your baby WILL wear Baby Gap clothes and look cute (shallow, I know), that life actually, really is rather normal. Ironically, I knew of PSDS before I had Oscar, as I was working for them, teaching children drama on a Wednesday afternoon. It had always been something I loved and looked forward to every week, but after having Oscar, these classes were to have a big impact on the way I was feeling. How would I see them now? Would I look at these children differently? Would I fear for Oscars future… On the contrary, If anything it gave me hope for the future. These children were smart and brilliant individuals and I thought if he’s half as amazing as these guys I’d been teaching, I’d be the luckiest mummy in the world.
PSDS hold a weekly playgroup called Digbies. In the main hall, toys and games are set up for the babies and toddlers, Mums and Dads are served tea and coffee and can just hang out with other parents who just happen to a child with DS too. In the rooms off the main hall, they have a speech therapist, an occupational therapist, a music therapist and a teacher. All of whom offer our children the different therapies from an early age. It’s incredible to say the least. Aside from all the therapies offered, which in itself gives us the knowledge and understanding of what we can be doing for our children now, it has been the most amazing emotional support. Their mantra is that with early intervention, there is no limit to what our children can achieve. I was nervous at first thinking that it was just going to be full of really sad and depressed people with these vacant babies. How very wrong could I be? My friend had told me to go there, for the simple reason that it wasn’t like that at all. And she was right. I remember driving home from Digbies that first week and feeling this huge sense of relief. It’s been somewhere I can discuss what support their children are getting from their local boroughs, to advice on when they started potty training. What age their child first sat up, to their birth stories and how their news was delivered. It’s a chance to celebrate all the children’s achievements. To see them thrive every week and to realise that actually, life is going to be just fine. To see that these people were “normal” people, has been a breath of fresh air. It might sound like we all sit around discussing DS. We don’t. We eat cake and arrange to have meals out and drink wine. I know I have made, some life long friendships there already. Just the other day we went round to one of the families houses for dinner. I don’t think the word DS was brought up all evening. It happens to be part of our lives but it certainly doesn’t define us.
Finally, those baby groups I mentioned at the start. You’d think a constant reminder of how a typical mainstream child appears compared to my Oscar. It was at first. But very quickly I realised that Oscar was doing everything that the next child was doing. Sure in some cases it might have taken him a little bit longer to work out exactly what to do with that toy, or perhaps when the other children were able to put the instruments back in the box under the teachers instruction, Oscar wasn’t quite mobile enough to do it just yet… But mostly, there wasn’t that big a difference. He smiled like the others, he joined in like the others, he threw tantrums when the instruments were taken off him like the others (we’re still working on that). It was MY issue as I said, not Oscars or anyone’s else’s for that matter. I’d been worried about where we’d fit in, when actually we were exactly where we were meant to be. The emphasis here is that it’s so important for Oscar and children like him to be part of this. More so perhaps the other way round, for society to see and accept. I watch the children I teach at PSDS who all range from 7-9 years old who for the most part all go to mainstream schools. They mix with children of their own age group who see them no differently. We as adults, should learn from them. This is what I hope for for Oscar. An acceptance.
It’s my belief that there’s no instruction manual for parenthood, I’m pretty sure it would put us off if there was hey. It’s a guessing game and the same goes for DS. There’s a lot of written information out there but the most important thing is that Oscar is Oscar. Someone once said he happens to have an extra chromosome but he is still 50% me and 50% Chris in his genetic makeup. That extra chromosome is just a small part. In those first few months i read a lot about it. I needed to know what was ahead. Some was good and inspiring, but most made me feel sad. I worried, and still do sometimes, about the obstacles that Oscar would have to overcome – without really knowing what would be a problem for him anyway. It was far too early to tell and besides a lot of the info out there was completely outdated and without the foresight of early intervention, that we as parents, stand by. I kept thinking about his life as an adult whilst he was still this newborn, so tiny and undiscovered.
So around about this time I put the books away, I tried to limit the amount of time I googled “people with DS” on my phone and decided that I should get to know Oscar. By doing that we’d find out about DS along the way and then work out what we needed to do, to best help him.
What I do know so far, is that he knows his own mind and likes to get his own way like his Mummy. He doesn’t stop charging around and likes to be the centre of attention JUST like his daddy. He loves music or anything that makes a loud noise. And he loves to make people smile…. Which he does.
And all I can say is, we’re having a great time in Holland and it’s not really that far from Italy you know……