A New and Very Unexpected Heartbreak

Leave a comment
additional needs, down syndrome, down's syndrome, equality, family, inclusion, pregnancy, special needs


I think it is a very natural thing, as a parent, to worry. It seems particularly true of us females. I hate to make generalisations, but from conversations I have had with other mums, it tends to be the mums that carry the worry of every minute possibility, allowing our minds to run riot with “what ifs”, however far fetched they may be, and concerns for the immediate and distant future. We worry about our children being bullied, being unhappy at school, their progress, their feelings, their eating habits, their birthday parties, and so on.

I am not saying it is exclusively women who worry but I think it is fair to say that, generally, men have a much clearer cut view of the world, things tend to be more black and white, more functional and, perhaps, more rational!

This is certainly true of when Seb was born. Whilst I was an hysterical mess of tears and grief and worry, fearing unknowns and feeling anxious about our son’s future, simon coolly accepted things as they were. Seb was still his first born son, why would he sit and worry about what lay in store in 16 years or so time? Nothing had really changed.

Then there was the worry with child number 2. Would he hate having a brother with Down’s syndrome and the extra attention it would bring to the family? Would he resent the additional time us parents spent with him, teaching him to read and do the usual things that just happen naturally to “typical” children? Of course not. Our family IS typical. It’s OUR typical. He doesn’t know any different.

And the arrival of number 3. A girl. Would that make number 2 even more the classic middle child? Sandwiched between a boy and a girl. An older brother with special needs who naturally demands attention and a baby sister, unique in her gender, and naturally, a beacon for attention by being a baby. Where and what would he feel was his unique point of difference?

So we have just been on our family holiday abroad. With it brought many, many irrational fears and anxieties. Would we lose one of the children? Would they be badly behaved? Would they hate the plane and scream the whole way there? Would they slip over by the pool and have an accident? Would Seb run off and jump in the deep end?” Would they misbehave at breakfast or dinner? Would they get sunburnt or sunstroke? Most of all, would Seb be “challenging” in any way and draw unwanted attention to the whole family?

A few steps helped to alleviate some of the anxieties, like getting the boys ID bands “just in case” but making the pact to always state which of the kids we were in charge of at any given moment so there would be no chance of relaxing and thinking the other was watching them. Making sure the boys had their armbands and sun cream on before we left the hotel room. I kept telling myself too, that actually being on holiday abroad was no different to being on holiday at home – except warmer climate, different scenery and food and actually an extra pair of hands as usually simon is at work.

So off we went. The 4am start added to the night before butterflies and very little sleep was enjoyed by me. We got up and actually the boys were brilliant, they were excited about getting on the plane.

We have been to the resort before. Once as newly weds, 17 weeks pregnant with Seb and feeling him move for the first time as I laid sunbathing by the pool. A holiday that allowed me to imagine my new baby and new life that awaited. I dreamt that one day we would return as a family, not just a couple.

Four years later, a trip with two pre-schoolers in tow. A holiday that was really important for me. I had grown to feel sad about our previous visit as I had been so happily pregnant, not knowing what was ahead. I had not wanted to look at the photos anymore as I felt foolish for daring to dream. But 4 years on and I had started to look back on that holiday with great fondness again. I had learned that our family was still exactly that. Our family. And here we were with the family unit I had dreamed of.

Which leads me back again to this year. And my new anxieties. Our adult to child ratio was out of kilter and I really wondered if we would manage, especially as I often jokingly say that Seb counts as 1 and a half as he does need to be watched like a hawk for running off.

But actually it was easier than the last time we went. The boys are great company for each other and, although they sometimes get a little silly when over excited, they entertain themselves quite well with their superhero games and role plays. They both took to the pool like little fish, happily wearing their armbands and playing on the inflatables their grandparents had sent them and making friends with others. Children and adults alike. It even afforded us time to sit and watch poolside without the need to chase them round the edge, Benny Hill style (which is what I had visualised). Seb did nothing but charm all those he met, there were no stares or bigoted looks, just people keen to interact and soak up Seb’s naturally vibrant lust for life – and swimming pool.

So what is worrying me now? Seb befriended just about everyone he came into close contact with. On day one we met a large family who had a sister / sister in law at home with Down’s. I felt a fool as id initially apologised for Seb invading their space, as he climbed over them all to get to their water pistol – the father said “never apologise for your child being friendly” and then he told me about his sister in law. He instantly had a personal connection with Seb and so every time our paths met he made a real fuss of him. Seb’s little brother, who is a little more cautious and more aware of personally space and stranger boundaries, often stood on the sidelines and on one occasion turned to me and said “mummy? Why doesn’t that man ever talk to me?”. It broke my heart into pieces, it hadn’t crossed my kind that he would have even noticed.

And then the same thing happened at a restaurant sitting. The waiter had taken an instant shine to Seb. Not least because as he first approached our table to take our drinks order Seb blurted out “burger and chips please”. Every time he passed he would high five or tickle Seb. This was met with roars of Seb laughter and a big, beaming smile. I caught Dom sitting expectantly with a little grin on his face and half holding his hand up for a high five, but the waiter didn’t notice and walked off. Again came the question “mummy? Why didn’t he speak to me?”

Oh crumbs. So all of my first anxieties and worries about Seb on holiday were unfounded, which was great, but in it’s place a whole new set of worries. For his brother.

But then, if we weren’t worrying about something, we’d be worrying right???!!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s