If you attended the 2022 SANDS garden day at the National Memorial Arboretum, you would have most certainly heard this poem, and maybe thought, What? Otherwise, you may have heard it thrown about the grief or baby loss community, or you have not heard about it at all before. Either way, It annoys me, not because I don’t like poetry (which I don’t), but it completely misrepresents how grieving parents feel.

Ok, I’ll explain. So SANDS used it at as a basis around their garden memorial day, which is a nice event in many ways, (if you are interested in loads of grieving parents, which is kinda my thing now). But this poem was so far off the mark, its unbelievable. The poem, ‘Welcome to Holland’ was written by Emily Perl Kingsley in 1987, after she had a child with a diagnosis of down syndrome. The premise of the story is that a person is excited about a vacation to Italy, but when they arrive it turns out that they get diverted to Holland, which is completely different (even though they are both in Europe just over 500km apart, not actually that far). They have to make adjustments, but then eventually they find that Holland is a nice place. (here’s a link below – have a read) I understand that this is a simile to the experience she had having a child diagnosed with downs syndrome. It is not what she expected but she has found beauty in parenting a child with a diagnosis of downs syndrome.

But, how the chuff is having a vacation diverted to Holland in any way like losing a child! Watching your child die just after being born at 40 weeks is more like being pushed out of an aeroplane without a parachute, somehow surviving and realising you have landed in the middle of a warzone, like the Yemen with no food or water. Then being told the only way to get to some degree of ‘normal’ is to walk, with no shoes on. It will take you ages, you will lose other people on the way, you will be exhausted, and you might not make it, and also on the way you have to walk through the Sahara desert and over the Himalayas, on your own!. Plus, you might go mental, most people do, but the support is crap so I wouldn’t even bother, just don’t go mental! Oh and by the way you can never go home. you might be able to go somewhere like home but not the UK. France at best, but without the wine! So good luck!

This poem is offensive in this context on three levels.

1. It is offensive to people who have a disabled child, parenting a disabled child is not just like parenting a dead child. Disabled people often live rich and fulfilling lives and this rhetoric feeds into disabled people being viewed as ‘less than,’ or even worse suggests it is like they don’t exist. Mim spent 5 years using a wheelchair and could rant endlessly about this – so many people spoke to me as they assumed she couldn’t speak (the woman has more degrees than most people have pairs of socks)
2. It completely belittles the experience of grieving parents, its not a change in plan and a small adjustment, its catastrophic and universe shaking.
3. Tts offensive to the Dutch! – I’ve been to Holland and its really nice!

However, 6 months into my long ‘walk’ to an unknown location, I have travelled a long way over the deserts and mountains, I know there is a lot further to go with many more challenges to face but it is getting easier. I now have shoes, food, water and a shelter. I can sort of see where SANDS are coming from, there are adjustments, and my life will never be the same again and hopefully I will see some happiness and joy in my life again. This is not because Lenny died, but because Lenny existed. My life is different and I don’t want to go home, I will find a new place to settle, hopefully in the mountains with my beautiful family.

I love you little Dude!! x