Jacqui Fish writes of her experiences caring for her son with a rare disease and while she grieves for the life she had planned, she has experienced new opportunities and found an unexpected beauty along the way

I read the essay ‘Welcome to Holland’ by Emily Perl Kingsley in a paediatrician’s office when my son was quite little. I already knew that my experience of motherhood was very different to that of my friends, and I found this essay to be profoundly helpful in reframing my mindset to accept the life that fate had given me.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

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 flight attendant 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 out 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….and 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 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.

Copyright©1987 by Emily Perl Kingsley. 

All rights reserved.  Reprinted by permission of the author

My son has vascular Ehlers Danlos syndrome, a very rare and life threatening genetic connective tissue disorder. This affects all his arteries and hollow organs making them extremely fragile and at risk of spontaneous rupture. He bruises at the lightest touch, and his skin splits open from the mildest trauma. At 16 his lung collapsed. At 20 both of his vertebral arteries dissected. At 23 his carotid artery dissected and he had a lung bleed. At 24 he suffered an air embolus in his brain which caused a stroke, microbleeds and a new vertebral artery dissection. He was in an induced coma for four days. Once he came round, he was recovering well when his colon perforated necessitating emergency surgery to remove it and leaving him with a permanent stoma. He takes a cocktail of medicines to try to strengthen his arteries and keep his blood pressure low. There is no cure and life expectancy is limited due to the high risk of arterial rupture.

As a mother and carer, I have had to reframe my life to revolve around my son. For many years I kept all my research and knowledge to myself. I dealt with the doctors, hospitals, school and daily care on my own because I thought that if I held onto all the grief, sadness and anxiety then the rest of the family could live happily. Of course, this is neither healthy nor sustainable, and undermined my husband’s ability to be part of his son’s life. As the emergencies increased and became more serious, we started to share the load. I learnt to allow myself time out to be me and follow the odd dream of my own.

My aim has always been to empower our son to live the best life he can. This means embracing opportunities and encouraging him to spread his wings. It means letting him go on a school trip, or get the train to work, even though I’m petrified something might happen. It means holding my fear, anxiety and PTSD in so that he doesn’t feel guilty, yet still challenging his behaviour if he’s rude or mean. It means not medicalising him and encouraging him to be more than just a patient.

But equally, we have learnt to let go. Plans have to be cancelled, invitations declined and dreams abandoned. It is, however, liberating to not have a bucket list—to just enjoy the life we have and accept opportunities that arise, and sometimes this leads to experiences we wouldn’t have considered. After lung surgery he couldn’t fly for a long time so we went on our annual family holiday by train and ferry. It was one of the best holidays I have ever had, made sweeter as we could all be together again after a traumatic few months in and out of hospital.

Caring for someone with a rare disease is a lonely life and it is important to allow yourself space for grief.

Friends and family are sympathetic, but no one can really understand what it is like day after day. A good therapist and the rare disease community are key to staying well. Reaching out to the vascular Ehlers Danlos syndrome community through the charity Annabelle’s Challenge, I discovered my voice. I have an enormous amount of lived experience of this condition and how to advocate for my son in both emergencies and routine care. I have been able to use this to effect change by helping to develop an emergency pack for our members to use. Most medics have never heard of vascular Ehlers Danlos syndrome, and even if they have, they don’t appreciate its unstable nature, or the often-subtle presentation of severe complications. The emergency pack has directly saved lives and I am incredibly proud of my part in it.

I have also been part of a unique collaboration between medics and patients, which has culminated in the publishing of a paper on self-advocacy in rare disease.  An article based on this was recently published in RARE Revolution Magazine. I have also trained as a Community First Responder for the ambulance service. None of this would have happened but for my son’s condition. Of course, it is not what I had hoped or planned for in our family’s life, but that rosy picture is rarely reality, and tragedies have visited many other people with seemingly perfect lives.

So, back to Holland and the life that our family have built here instead of the life we expected. We are sad that there are things that we can’t do and dreams that we have had to let go. We are so very scared of what the future holds and we live with the consequences of all the trauma that we have endured. It has fundamentally changed us, yet there have been so many special moments, not least the incredible bond that I have with my son. He has taught me so much about life and humility—and how to build Lego! We have met extraordinary people, and made life-long friends. We have learnt to appreciate the stillness of a pyjama day and tolerate uncertainty. We live for today and embrace the opportunities that come our way if we can, letting go of the rest with grace.

Vascular Ehlers Danlos syndrome is a tough card to be dealt, but we are more than his diagnosis, and the tulips are beautiful.

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We are delighted to welcome Paul Kidwell as a regular contributor and supporter of the caregiver voice throughout 2025. For more information on Paul’s podcast check out insickness.org