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Rett Syndrome and me: White picket fences

Beth Johnsson

IMG 4459 768x1024 Rett Syndrome and me: White picket fencesWhen you’re young, I think you think that by the time you’re, say, 36, you’ll have it all figured out: love, family, money, career, that important fundamental kind of stuff. Not necessarily all perfect, white-picket-fence sorted, but perhaps at least a muddy-brown splintered gate sorted. Okay, my 36th birthday is still a couple of months off, but the chances of me figuring it all out in the next 91 days seems pretty slim. What I don’t think you imagine, when you’re young, is that when you’re not a million miles away from 40, you’ll spend a day disclosing your most personal information to a financial advisor who is genuinely old enough to be your daughter, and who cannot be blamed for not understanding how devastating a blow the computer generated ‘no’ is to you.

Twenty-four months ago, after a week in a large, open-plan house in which Hannah’s mobility visibly progressed, we set the wheels in motion for a house adaptation which would maximize her possibilities within our small, 3 bed terrace. At that time, the moment when we could no longer get Hannah up the stairs seemed a long way off, but trying to be responsible, not-in-denial parents, we planned a build which would move her bedroom downstairs and add a wet room. Additions and adaptations no mother ever wishes for, but which I knew had to be faced.

To tell the intricate details of the two interim years would be mundane: meetings, drawings,  forms, trips to Magnet, more meetings, phone calls, emails, more forms, more meetings. Nothing of note, really, just jumping through the hoops and ticking the boxes I suspect everyone in our position needs to jump and tick.

The majority of the works proposed were to be covered by a grant. A grant we are fortunate to be receiving but to which we would rather not be entitled.  Then the quotes came in, and it turns out the works are disastrously pricier than anticipated. We cut out every last detail that wasn’t essential and compromised on every minute component, leaving only those parts which we wish we didn’t need. But still the shortfall, which would more aptly be called the tall, wide and dauntingly deep fall, is down to us. Contrary to the comments of one recent reader, neither the author nor her husband can afford a lawyer or, apparently, a builder.

Cue the financial advisor. And not just her: cue two more financial advisors, two surveyors, three builders, two party wall advisors and an encyclopedia of emails. I used to dread the build itself (every builder has paled and muttered the word ‘dangerous’ when told we will be living here throughout), but now I’ll be throwing a ‘start date’ party if we actually make it that far.

In the last few months we have explored every alternative possibility. We’ve looked at relocating closer to family, the coast and the chance of a little more space for a little less money. It ticks every box, except for the rather fundamental issue of Hannah’s school and services. We’ve weighed everything up repeatedly, hoping the scales might tip differently if we just keep trying, but a bigger house never outweighs education and support. We’ve looked at moving locally, but having randomly landed in the most expensive county in the country, we can’t ‘upgrade’ where we are. Even if we could afford to make that move, we no longer have the time to go through the processes of marketing, selling, buying, moving and, inevitably, adapting. That moment which seemed so far off, it’s here.

Facing that moment is painful enough, but feeling that you cannot provide what your daughter needs in that moment makes it harder still. When you’ve worked hard your whole adult life and have tried to be a generally decent person and parent, it’s painful to feel you can’t provide your daughter with the space and freedom she needs to fulfil her potential, with the dignity of an appropriate bathroom, with the privacy a little girl turning into an adult should have. It’s hard not to wonder where you’ve gone wrong and why you don’t have it all figured out.

Maybe, when you’re young, you think that you’ll have things figured out by the time you’re almost 40 because, when you’re young, you are able to have faith in the soundtrack of your parents’ generation and to believe in The Beatles. But if love was all my daughter needed, she’d be sorted – the white picket fence kind of sorted, without a doubt.  If only John and Paul were right.

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