Firstly, let me add that I have never actually visited Holland however I am sure it is a beautiful place. 

No, the Holland I mean is the poem “Welcome to Holland” (Emily Perl Kingsley , 1987).  

When Sam was first in hospital and it was evident that life wasn’t going to pan out quite as we’d expected, it seemed to be the go-to item for people to send me, or to tell me about, or (worst of all) to quote from.

And I have more than a few issues with it.

The poem explains that having a child with a disability is like going on holiday to Italy, only to land in Holland.

First off, having a baby diagnosed with a disability, especially one you had no forewarning of, is not like landing in a different country.

It’s like being pushed out of an aeroplane at altitude with a parachute but no instructions other than ‘pull here’.

It’s like finding yourself not only in a different country, but a hostile desolate landscape devoid of life, trees, water (think Mad Max for suitable post-apocalyptic image)...

Once the initial shock starts to fade survival instincts kick in and you have to get up and decide which direction to walk in, without any signposts to help.

You just keep walking, and as you go you meet other people with the same bewildered, terrified look in their eyes.

You travel together, occasionally tripping or falling, but the rest of your ragged band of travellers are there to help.

And yes, eventually you arrive in Holland… acceptance comes but it isn’t a one way path; you revisit all those emotions of grief, anger, denial and so on as you carry on living.

And yes, this life has a wonderous amount of beauty and joy but it is also damned hard.

Don’t get me wrong, it’s not that I hate the poem; I actually think it can be incredibly helpful but for me it doesn’t do justice to the maelstrom of emotion that this life brings.

While life with Sam is all about loving the moment and loving the child we have (who is awesome), it is also about the high-speed ambulance race across town, long stays on hot, stuffy hospital wards praying for answers.

It’s having to abandon shopping in a trolley half way round the shops and just run, because a call to say he’s on his way to hospital from school just came.

Its about the usual parenting battles to give our boy has the life he deserves while juggling multiple appointments/consultants/hospitals.

Six years on since our world exploded, and I do feel I’m getting closer to Holland.

It is all the more beautiful for the trials it has taken to get here.

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