There is a well known essay called ‘Welcome to Holland’ that many parents of those with disabilities feel they can relate to. There is a link to ‘Welcome to Holland’ below for those who are not familiar.
For those in the undiagnosed camp, it feels less like ‘Welcome to Holland’ and more like ‘Welcome to No Man’s Land’. Those in Holland set off on a journey that has ended somewhere definite – accepting that it is not Italy as they had hoped. Without a diagnosis, no explanations and no label, we have all landed in limbo, we are in No Man’s Land.
So what does it feel like in No Man’s Land? Well to begin with it is a very lonely place. We were supposed to go to Italy. Then we were diverted to Holland but Holland won’t let us in. We don’t belong, our Passports lack the correct stamp to enter the country. We are stranded.
It is confusing and there is nowhere to turn. Professionals are baffled at the lack of a box to put you in. They pop over from Holland and try to help but ultimately the country is not set up for those without a diagnosis. Service providers struggle with the lack of a name to put on the form. Geneticists review your conundrum of a child, they sometimes become excited by the challenge. They confirm that you do not belong in Italy and neither do you belong in Holland but they cannot tell you where you should go. There is no guide book.
As a parent, you research all of those diagnoses you can see over the border in Holland, sending the geneticist name after name of potential syndromes – only to find they have all been ruled out. It is unlikely we will find our answers on google but we try. We have no better options.
Then comes the ground breaking research programmes, the hope that these might give us access to Holland. We willingly give our samples and wait, hopeful of an outcome. For some there is success and they grab their passports and flee across the border to face a new set of challenges. For others there is no answer and we join the next research programme. We peer over the border and wish we could reach Holland. We wistfully dream of Italy and we share the ongoing pain of those in Holland that we will never go there.
In the meantime, we carry on with life. We battle to co-ordinate care for our little ones despite the lack of joined up medical records. We fight for services that are not geared up to cater for those without a label. We join with Holland to campaign for better services for all disabled children, whilst flagging the extra layer of complexity that specifically affects us in No Man’s Land.
We also after a while learn to live life and enjoy what we have. A diagnosis is the aim but in the meantime, we enjoy our precious children and the joy that they bring. The small steps forward are extra special as they were not expected – no prognosis means no limits. The beautiful smiles and giggles that melt our hearts and we are grateful for the richness our children bring to our lives – regardless of the country we live in.
We also meet a whole new group of people. Despite 6000 children every year being born without a diagnosis, we are a relatively small community.
Please support my campaign to improve the co-ordination of care for undiagnosed children. You can find further details here – Out of the Box
Swan UK are the lifeline for those in No Man’s Land. We need this group and funding is at a critical junction with some big grants ending. My one request is to help support Swan UK to continue running and supporting the 1000 families already signed up, as well as reaching out to the 1000s of other families battling in isolation.
If you would like to donate to support the work of SWAN UK you can do so via the Just Giving page or our Virgin Money Giving page. You can also donate by texting SWAN11 £3 (or any amount up to £10) to 70070